 
FROM TRAGEDY TO CHALLENGE

The Impact of Disabilities on Families

Mei Shackleton

Copyright Mei Shackleton 2012

Published on Smashwords

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The Author

MEI SHACKLETON is a family therapist who works in Adelaide, South Australia, with individuals diagnosed with acquired brain injury and their family members. Ms. Shackleton qualified as a social worker forty years ago. Her other academic qualifications are: Master's Degree in Social Work (Flinders University of South Australia), graduate diplomas in Group Work and Health Administration (University of South Australia).

"Mei writes about individual lives and the impact of disabilities on caring families.

We read about love, faith, commitment and dedication. As we read of their experiences, we are invited to connect with our own experiences and attitudes.

We are challenged to reflect on how we would act in similar circumstances.

We are challenged to have new visions about life and what it means for us, especially in our relationships with others.

For readers in similar circumstances we can be reassured that whatever our difficulties or struggle in life may be, we are not alone.

There is always hope."

Rev. Margaret Polkinghorne, 1999

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Dedication

To my parents, who have dreams for me and to

my daughters Gillian and Fiona, for whom I have hopes

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CONTENTS

ACKNOWLEDGMENTS

INTRODUCTION

PROLOGUE

CARER'S PERSONAL STORIES:

For better & for worse in sickness & in health

Till death do us part

Gender

Culture

Partnership

Di

Irene

Vicki

Victor

Bill

Marilyn

Rod

Dianne

Margaret

Helen

Blood is thicker than water

Mothering versus fathering

Autonomy versus dependence

Max

Eugene

Lyn

Lloyd

Lois

Maureen

Marie

Keith

Pam

Russell

Neville (and family)

Denise

Clare

Ann and Rex

Caring for a parent, Caring for Brothers and extended family members

Age Gender Sibling

Jean

Linda

Jenni

Mary

Marie

INTERVIEW FINDINGS FROM OPEN-ENDED QUESTIONS102

CONCLUSION

ADVICE TO PROFESSIONALS:

Helping the bereaved

How to empower service users

Useful hints

DEFINITION OF TERMS USED

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ACKNOWLEDGMENTS

I wish to thank the Julia Farr Foundation, as well as two social work students from the Flinders University of South Australia - Beth Gaskin and Krystie Edwards, to Ms Glenys Steedman for her assistance with the first draft and Ms Fiona Shackleton in the final draft of this book.

A special thanks to all participants, staff of the Head Injury Unit, and the following relatives who gave their precious time in telling and editing their stories:

Di, Rod, Irene, Dianne, Vicki, Lee, Victor, Margaret, Bill, Helen, Marilyn, Jenni, Jean, Marie, Eugene, Pam, Lyn, Jeanette, Russell, Lloyd, Neville (and family), Max, Denise, Lois, Clare, Maureen, Ann and Rex, Marie, Keith, Linda, Marianne, Jenni, Jean, Isabelle, Joe and Marie.

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INTRODUCTION

In many ways this book has opened up more issues than it has answered. It is an honour to have been involved with so many families who were enthusiastic to support the study. Many families agreed to be interviewed, there were many who were so busy that even though that they had wanted to support the study, they did not have the time or energy to do so.

Forty-nine relatives were interviewed with open-ended questions based on narrative themes resulting in the re-telling of their remarkable stories. Many families agreed to be interviewed and there were many that supported the study but did not have the time or energy to participate.

My first task when the interviews were all completed was to have transcripts made from the audiotapes. I had forty-nine tapes from relative-carers, some of whom spoke for half an hour and some for as long as four hours. I conducted a thematic analysis from the transcripts, which involved frequency counts of thirty-three feeling/themes that emerged.

One of my objectives was to find out how relative carers deal with day to day stresses. Relative carers often feel undervalued because most agencies offering help focus more on patients than families. I aim to remind health agencies and patients that families are an important resource that needs support and respite.

The carer's stories showed that they overcome traumas, conflicts and stresses to make the best out of difficult situations, sometimes at the expense of their health. In retrospect, the positive emotions of their journeys enable them to live from day to day.

It took me four years to write this book and the journey was an immensely humbling process. I had been funded to conduct a study of carers' stress. Part of the study was an interview and a written questionnaire, which I tested on a carer mother (Mrs. B.) After answering the list of questions in the self-scoring stress checklist she turned to me and said " It (answering those questions) did nothing for me, I would rather tell you in my own words what happened."

After Mrs. B left my office her words remained in my thoughts for a long time. Her remarks sowed the seeds of an ethical dilemma for me. Mrs. B. 's comments reminded of my narrative training that telling one's story is a representation of experience where new meanings can emerge through creating space for new interpretations. A single questionnaire did not allow for creating space.

Modern psychology challenges that there is no such a thing as objective social research. I was torn between wanting to be an objective researcher and a participant facilitator. In choosing simultaneously two different methods of enquiry I compromised by being both an objective and a participant facilitator in my data collection.

I realised that having my clients retell their stories could be healing, as there was a huge need for them to unburden themselves. Some had kept their feelings bottled up for years. Some may have retold their stories many times but each time their interpretation was different .For some it could be cathartic and the emphasis on their achievements renewed their spiritual belief, or belief in themselves as survivors rather than victims. Thus convinced, I extended my enquiry to include a face to face interview so that the experiences and the meaning of carers could be told. If I had remained true to my original more formal academic plan, this book would never have been written.

Initially I present the carer's perspective and then compare that with the service provider's point of view. I hope that by doing so it is clear that what helps carers may be different from what helps professionals. I believe that to enable relatives and professionals to work collaboratively there is a need to view the situation from both sides.

Relative carers are often expected to transform into health para-professionals overnight and are overwhelmed by the task confronting them. They are frustrated by the feeling that they have been cheated out of pursuing their own future and the fact that their loved ones may require their care, perhaps for the rest of their lives. The process of care, rather than the amount provided, is a more important factor in the degree of strain a family experiences.

It became obvious that one of the major issues is the enormous need for relative-carers to be listened to. They may have been informed many times over what head injury was all about, but during the initial trauma, in the acute phase of acquired brain injury after the accident, how many would take in what they were told in a balanced realistic manner? Many would absorb the positive news to maintain what hope they have and ignore the negative. A few would take in the pessimistic prognosis, totally eliminating what little hope they had from positive predictions. I hope this book will help relatives understand more about their new circumstances and to maintain a balance between hope and negativity.

Most relatives acknowledged that their lives had been changed by the illness/accident of their care recipients. One sister of a resident experienced Post Traumatic Stress Disorder herself as she was in the back seat of the car when the accident happened. She self-referred for treatment.

The following picture from the relative-carers point of view was uncovered.

THE IMPACT OF DISABILITY ON THE FAMILY

•The majority of respondents felt initial reactions of shock and trauma.

•There is a feeling of denial and powerlessness associated with trauma. Denial was felt by nearly half and powerlessness by many interviewees. For those who experienced denial, they experienced it for short periods only. Many people normalized this feeling by saying that it helped them to deal with the pain of reality. As their relatives recovered, other more positive feelings or urgent tasks that were needed replaced the sense of denial.

•Many families reorganised their lifestyles or routines to roster for long hours of vigil by their relative's bedside and subsequent care.

•Some relatives became detached as the person they knew changed and became unfamiliar.

•Sadness and despair were felt by about three-quarters of participants as they watched their relative's progress with disabilities.

•A quarter of the interviewees found that telling people outside the family about care recipient's disabilities were a difficult issue to deal with.

•Regret played an important part in relative's past. Over one third of relative carers would have done things differently in hindsight such as seeking second opinions on medical decisions because of their gaps in brain injury information. They longed for the opportunity to be able to decide important issues again, if it were possible, especially when it may mean improvements for their loved ones.

•Most relatives live from day to day and find it hard to envisage the future. Fifty-five percent stated that they could only plan from day to day. On the surface this appears to contradict positive feelings expressed. However it could be that relatives were afraid to lose hope. The future seems to be out of their control because so much relies on their relative's health status, which can change from day to day.

•Many relatives described their mental state as entwined with their loved ones. When the care recipients felt up or down, the carers correspondingly felt "up" or "down". Awareness and understanding of this may help reduce stress in both health professionals and relatives.

•Many ageing, frail carers expressed concern for future care of their relatives in the event of their demise.

•Over three-quarter of relatives experienced loss and regret.

•Over half felt grief some time during their journey of care. The picture they painted seemed to be consistent with episodic grief.

•About half felt isolated, within their own homes (for those who care for relatives at home). This is understandable as it would be difficult for relatives to socialise if they were burdened by caring tasks

•Some relatives felt that they were not heard by health professionals, even though they may be listened to, because there were no response to their requests

•Most relatives did not find it easy to negotiate the medical model treatment systems and caring agencies, particularly in the early stages.

•Relatives were reluctant to complain for fear of being labelled as a 'troublemaker'. An imbalance of power was frequently cited as the main barrier to open and honest communication between relatives and systems. An equal partnership between carer and the representatives of the systems was impossible because of the perception (frequently cited in the interviews) of this imbalance of power.

Reasons for reluctance on the part of relative carers to accept much needed help were not explored in depth, as it was not an objective of the study. Rehabilitation professionals often explain the lack of progress of the patient as "plateauing" (a levelling out of progress). Many relatives refused to accept this theory. This is an area that needs further research.

This reluctance to accept help has serious implications for health professionals as it infers that the support such as information/education that we are offering is either inadequate or inappropriate. There is a need for health professionals to listen to what relatives have to say so that more appropriate assistance can be offered at the right time. We need to be more family and culturally sensitive if we want to work in partnership with relatives.

Service providers need to empower relatives from the beginning if they want to enlist them as an important caring resource. We need to refer carers to self-help groups and other agencies to assist them when choosing options for care recipients.

Positive feelings and affirmations of the journey of relative carers also emerged through the narratives. It is possible that in their reflections of the past and in telling their stories they were looking through rose tinted glasses or were reluctant to reveal/dwell too much on the dark side of their experience.

Many carers told me that they could not cry in front of their relatives, no matter how sad they felt. Others could not cry because of their upbringing or their personality. More men mentioned this than women.

The impact of being interviewed and taped made relatives look at their past in a new light or with new understanding. Many broke down and cried during the interviews.

It seemed that there was a need to tell others what they had gone through. Most were willing to make their stories known to other carers hoping they would be of benefit to them.

WHAT HELPED

The majority commented that there was no right or wrong approach in helping relatives deal with disabilities. What worked for them was the right approach. Most relative carers did not have time to reflect on what they had done since the injury or diagnosis, even though many years had passed. A lot of relatives mentioned that their sense of humour, love, firmness, positive thinking and confidence helped them cope, although seven-five percent felt exhaustion and stress in their lives.

What helped relative carers was their positive attitudes and actions, such as being assertive, adaptive, creative, spiritually strong and accepting help from others, including professionals offering family support.

About one third of relatives did not realise that they were flexible and adaptive and good at problem solving when dealing with disability problems. When asked about their strategies, most relatives became puzzled and replied that they did not have any. As they searched in their past for methods of dealing with difficulties, themes of keeping busy, hobbies and ways of stress reduction emerged. Women tended to divert their attention by occupying themselves with trivial schedules of caring or by letting off steam. One example was by smashing glasses on a wall to release feelings of frustration. Men tended to choose holidays or fishing trips as breaks, provided that their financial and caring circumstances allowed them to go away.

Support for relatives' effective health maintenance would contribute to enhancing their caring role. Awareness and understanding of this may help reduce stress in both health professionals and relatives.

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PROLOGUE

Who are the people interviewed in the book?

Relatives caring for patients affected by brain injury were interviewed using open-ended questions. Relatives that appeared most emotionally stressed excused themselves from the study because of their lack of time.

Stress is defined in this study as the internal response experienced when subjected to stimuli that threaten our emotional needs.

Relative carers referred to in this book include families and significant others. The term relatives is used in a broad sense, encompassing blood ties and close friends. Historically, brain injury recovery is viewed as having a long lasting effect on families, as personality changes and behavioural issues often change family relationships. It can be a long haul; some relationships become closer and some become distant, depending on the stressors that families experience and the pre-injury family dynamics.

There was little documentation about this group of volunteer relatives who assist in the care of residents and who are an important resource. 1996 was a turbulent time of change for many health care organisations. In dealing with families for over six years, I noticed that some families cope well, others not. Each family is unique and each brings with them their particular culture of coping with stress, beliefs, strengths and weaknesses.

I noticed spouses/partners responding differently than parents of a person with brain injury. Partners often face drastic role changes, some of which maybe incompatible with the partnership role. Role reversals are common. Some male partners find it hard to change from a breadwinner to a nurse. Female partners may find it difficult to handle the finances and discipline of the children. Sexuality is another aspect in the relationship that may not be as confronting as for parents. Parents may regress to a "re-parenting" role, which belongs to parenting. But in general the transition is less radical than that of a spouse.

The position of the family support worker is a new one at the nursing home. It came about in 1995 as a request from staff and families in recognition of the fact that relative carers are also our customers and secondary clients for those patients who cannot advocate for themselves. The question that I asked when I started my job was "How can I be of assistance to families in dealing with the various impact of injuries/illnesses of people who received our services?" The study showed that lack of information is the most common complaint from families. This may be because information was not given; information given has not been absorbed due to extreme stress, information has been given in a way that it is difficult to understand, or that hopes and wishes for recovery may override the reality

Among the twenty-nine people who told their stories; five were in full time employment; most were struggling to make ends meet; three were from culturally diverse backgrounds; two were teenage carers but most were middle aged. Many were interviewed in their own homes individually; some were interviewed as couples and two as a family. The majority of care recipients have Acquired Brain Injury (including strokes), Multiple Sclerosis or Huntington's Disease. Role changes were most apparent in spouse carers, although young and aged parent carers experienced the worst health. In most cases their caring experiences gave them strength and made them more humane as their family member's illness progressed. Factors such as class, gender, culture and race are significant in how different families cope. Denial can be very functional in providing hope for relatives, even if only for a short term. Therefore, it is not necessarily a bad thing that needs to be confronted, especially in the early phase of rehabilitation. Grief is no longer seen as pathological. Losses, suitably dealt with and acknowledged will help with healthy adjustments to chronic disabilities. But as most families experience episodic and serial grief, triggered by anniversaries, it is not time-bound or predictable. Mostly for the carer, it is episodic and serial grief, triggered by anniversaries, significant milestones that will never occur such as graduations, marriages, careers or grandchildren. They felt that they had lost one person and gained another that they did not want, in some cases a child- like mind in a grown up body.

Stress management groups were introduced for relatives who assisted in the daily care of residents at the nursing home. Relatives welcomed the mutual support and relaxation we facilitated in weekly sessions. The groups, run in conjunction with a recreational officer and a volunteer, revealed how responsive and sensitive relative carers were to one another. Parents were exposed to high levels of stress in their daily lives. Self –help groups, education, support, advocacy and practical help were found to be helpful. Giving advice for most is not helpful. Relatives had a great need to be listened to rather than seeking directives.

Carers have shared their private world of emotions and human experiences. The personal journeys of relative carers are the basis of this book of transcribed and edited interviews. The suggestion of presenting these stories in a book form was met with approval from many interviewees. An eighty-year-old relative-carer visited me and requested that I finish the book before she dies. As she is already in ill health I had to get on with the job.

Home care is a significant part of a patient's convalescence after acute care. Discharge planning to the community should consider the carers' ability to cope if their involvement is necessary. Carers need to discuss gaps of service early. If not, existing services will be under-used and available resources will be applied elsewhere, or carers will struggle unnecessarily and may become ill without the support of services.

Health organisations need to find the role that personal resources play in reducing the effects of stress so that support can be planned and delivered to alleviate carer burden. Specially designed measurement of carer's stress levels is few. Most self-rating scales are inappropriate to measure carers' stress; regardless of the severity of disability of those cared for. The reason for this could simply be that technological advances have enabled a lot more disabled people to survive where previously they would have died. " High stress levels among a sample of twelve relative carers in a nursing home were measured using the Holmes Rahe Scale (1967) of life change units." These relatives are members of my group work ran to reduce stress levels among relatives. Many relatives believed the scale to be inappropriate as they were not specifically designed for carers. In 1996, groups for stress management were run at this nursing home using various stress and anger scales, to assess client's stress levels and were generally found unfavourable. Towards the end of the study, I found narrative methods of interviewing, as well as a non-deficit model of assessment, CAMI, CADI & CASI (Nolan et al., 1995:14) a self rating scale designed for assessing family strengths for carers, as suitable clinical tools in assessing carers' stress, with time being the decisive criteria.

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Caring for a Partner

FOR BETTER AND FOR WORSE

IN SICKNESS AND IN HEALTH

Gender

Many partner carers are women. I have proportionately taken more samples from the male carer group than female carers so as to be able to compare any differences in terms of equal sample size. Their combined number is about five per cent of my study sample. Men appeared to be more critical of services provided and were more in need of family support. Females were more prone to denial while men enjoyed better health. In general males expressed grief less than their female counterparts.

Culture

Two spouses in this group, a husband and a wife, Victor and Helen, both come from a culturally diverse background. Both were married to Australians who became disabled mid life. Both worked full time. Victor is Italian and his wife died three years ago but before her inevitable institutionalisation, Victor cared for her at home until it was no longer possible. They demonstrated extreme devotion to their spouses despite being smitten by misfortune. Victor perhaps controversially believes that Italian families have stronger affiliations than Australian families.

Helen was still doing a lot for her husband, to the extent that she is approaching daily exhaustion. As a health professional, she knows that she needs to look after herself, but she could not spare the time. In addition, She believes her Greek culture dictates that she puts her husband before herself. Again, how much of Helen's behaviour is prescribed by her culture and how much by acceptance of her gender role?

I found that most male relatives' initial response to taking up the carer role is feeling they may not be able to cope whereas for female carers the response is that they should be able to cope. Research in this area would enlighten us to as why this is the case. It did not seem that men avoided their responsibilities, rather they often expressed that they would be able to be both a bread- winner and a carer. Women on the other hand accepted their caring responsibilities almost intuitively, feeling as if they should be able be cope because it is within their nurturing nature and whether they had a career or not was beside the point.

Partnership

Interviews with partners confirmed what is evident in my literature research: that spouses/partners are affected differently from parental caregivers. It may be because dependence and child-like behaviour of a brain injured person makes a fifty-fifty partnership impossible. The carer has to give more and take less. Often the responsibilities of care lessens the shared intimacies /pleasures prior to injury. Physical and time limitations may change sexual relationships. In addition, personality changes and memory problems may cease pre-existing intimacies, or cause dissatisfaction.

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DI

"Sometimes I feel angry that this has happened to her because she was an extremely competent person and I feel that to inflict a disability such as MS on her was a cruel thing to do".

Di cared for her partner who had Multiple Sclerosis (MS) while holding a part time job. As her partner's illness progressed, her health as well as her business suffered. She is now working at home so that she can do both.

Initial Response

I suppose I got a bit of a shock. But I realised, I think, that in the preceding six months that something was wrong. Having had friends with Multiple Sclerosis prior to that in an earlier stage of my life, I sort of guessed what it was anyhow. I was fairly well prepared for what was going to happen. In reality though, I probably wasn't as prepared as I thought.

I realised that it would probably mean a lot of lifestyle changes for both of us, although I didn't realise the significance of that. In a way I thank God that I was there with her because I realised that I was a pretty strong person. She'd have someone to stand by her when she needed that.

Sometimes I feel angry that this has happened to her because she was an extremely competent person. I feel that to inflict a disability such as MS on her was a cruel thing to do. At other times I can see what's caused it. Being a person who has always worked to the outside of her limits she has induced probably a lower threshold. She has probably allowed anything in the way of a virus to get at her. In that respect I just feel that it was a lack of care as far as she was concerned.

Other times I think that you don't even have time to really think about what they are feeling or what you are feeling because you are so caught up in the machinations of it all. You just keep on keeping on.

Lifestyle Changes

It has certainly altered our lifestyle completely. We were well off. We had a very active social life. We had a very active physical life. We travelled a lot and did lots of exciting things. We had a very loving relationship. Now just about every angle or every aspect of that life has changed. We have gone from a high income down to a very low income. We don't travel anywhere and we go out very rarely. At the moment though, that is changing a little. The relationship itself has altered to that of friends. Only recently after four years has there been a degree of feeling coming back into the relationship, particularly on the side of the inflicted person. So overall, it has just been devastating.

I'm not frightened to tell people about my partner at all. I think it's important that they do know because then they realise, firstly the strain that I'm under particularly when I'm in the workplace. But I feel that my friends care for me as my family does. They really would like to know where I'm at rather than me trying to pull the wool over their eyes.

It has had a devastating effect on our relationship as two people. My partner becomes very angry, very withdrawn, very caught up in the disease that she has to undergo and I get very tired, very stressed and therefore a little angry and bad-tempered at times.

What Helped

I don't think that I have developed any specific strategies. I've made sure that I have maintained a place in the workplace to date, because I feel that I require that. One for stimulation, but two for getting away from the situation and enjoying a bit of life because I really love my work. I've certainly had to have help in stress management control. Probably to be told things that I already knew but to refresh my memory and skills a little. I also find that I've had to develop a sense of patience that I've not had to think about before. Also just really develop a bit more strength. Although I've always been pretty strong sometimes I wonder how strong I can be.

I think that in terms of developing strategies for the planning and management of the household, we've done that quite adequately. We've drawn on domiciliary care services and equipment. We've drawn on community support services which are agencies that provides additional home help, personal care, cooking, all that sort of thing. One so that I can stay in the workforce and two so that we can survive at home. I have a pretty good medical knowledge so I've made sure that wherever necessary, medical aid or advice is brought into the situation so that the proper decisions can be made.

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IRENE

"We've been married for 28 years, it's a partnership and that's been taken away. I have to make all the decisions. Rene was in complete control for all the financial things. Definitely there are role changes".

Rene had a cerebral aneurysm clipped. He then suffered a subarachnoid haemorrhage and a stroke. His short term memory loss is permanent. He needs prompting with day to day activities and experiences pronounced fatigue. Irene showed extraordinary understanding as a wife of a husband who had a second aneurysm fifteen years after his first one. She felt she had to be strong for the sake of their family.

Initial Reaction

At first I didn't give in. I tried everything and anything. That's why it helped me to go through that stage because I never gave in. I thought that he was going to get better. He had to get better. And then slowly you start accepting that he's not going to get better. I know that for someone to recover from a brain injury, the memory improvement from confusion will be immediate, within weeks. Even though I had an idea, I thought "No, maybe it will take a bit longer because he's not a young person". But even so you still hold onto hope, which slowly fades away and you go into what I call the grieving process. It all depends on how accepting you are, and it's not until you get to that accepting stage that you start taking control of your life again. It's amazing what goes through you mind. The brain is a very powerful thing. I realised I had two choices; I could either let it get hold of me and make me go down, down with Rene, or I could still make a quality of life for us. And I know that you only get one chance at life and I want to live a life. I've still got him. I suppose a lot of people like to be in control but I miss that partnership.

Loss of Friends

A lot of people stay away from anyone who has got a brain injury. They think it's something you can catch. I've noticed women are more accepting though. I find that men are frightened of it. I suppose it doesn't just have to be with brain injury. It could be with anything. It's then that you find out who your true friends are. We didn't have much of a social life before because I worked full time and Rene worked full time. We were at a stage in life where we were getting everything together. We were financially comfortable, and I gave up full time work. My last day of work was the day Rene rang up and said he was diagnosed with an aneurysm. We were looking forward to giving up work to go into the next phase our life, like going out more and enjoying ourselves. We had even booked an overseas trip. It all changed overnight. It almost makes you think there is someone that is more superior to us, that is in complete control. You make plans and someone knows that's not the way you're going to go. You're going to go another way. Unless you have that belief, you have to cling onto something. Otherwise it doesn't make sense to you. It just wasn't meant to be. And I suppose that frightens me more. My father had mental illness and I always feared that. Even though a stroke is not mental illness, coping with it is the same. My Dad has schizophrenia, and I always missed that father figure. When I got married, I liked it because it was a role reversal.

The Future

Because we are taking one day at a time, I'm not making any long term plans. To cope with life you have to have goals. Our goal is to have a nice house to move Rene to. But we're not hurrying it. We're just taking one day at a time. I am just hoping that Rene's life will improve just that little bit. I've tossed a few things around. With Rene the way he is, he can be left on his own. Jeffrey our son is living with us, so I still like him around. He's going to Uni next year and even if I were away, there would be someone with Rene on and off all the time. I can still go back to work. I took a package. But if I wait another 18 months I can go back to work. So it is not out of the question. We are still working on the financial side.

Strategies

Last year was a hard year because Jeffrey was going through Year 12. I didn't want to ruin anything for anybody. I had to put on such a brave face and I didn't let Jeffrey know the seriousness of Rene's illness, or I tried not to. I don't know how much was understood. But I kept encouraging him, that things would be okay. We'd have to get through it. I kept explaining to him the different stages of life that we were in. I was saying, "No, you have to continue with your school work because your life is beginning. Your dad's life is slowing down. Even though it is a sad time in our lives, you have to continue with yours". Somehow we got through it. I was so lucky because Jeffrey is so similar to me. We were able to relax. We were able to talk together.

I had to be strong. I couldn't fall apart. I had to be strong because I had to visit Rene in hospital. I always find that if the doctor sees you coping with the situation, they tend to tell you a lot more. I put on a brave front. People don't want to see you moping around all the time. I thought I carried myself through it all quite well. Consequently I didn't cry when I could have cried, and I still can't cry. I suppose it will happen one day. If we can't laugh, I'll go and rent a comedy or a good drama where you can have a good cry.

Taking control is the way you deal with your life. I still want us as a family to be happy, and have a life, here after. You only have one go at life. I still treat Rene with respect. Although he is a completely different person to who he was, he is still a person. I'm very grateful to him in the way he handled our affairs. Like we always tried to do everything right, eg. Rene took out an insurance income protection, so I didn't have those financial worries when he got sick. I didn't have to run around and wonder where our income was going to come from because he had an income protection. We didn't have a will (the first time round, Rene was 32 years old), because young people don't die. So we learnt from that. That also taught us not to over-commit ourselves. It was easy for me to cope because Rene had the income protection insurance going. We saved our money; we did our trips too. We did everything in moderation. We've got power of attorney, and everything. I suppose another thing is that we've both got very good children who have never been a problem to us. They've been in control of their lives and I suppose all those things help. The only thing we have to worry about is what happens to us naturally. If I had the problem of worrying about our children, that would have made it harder.

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VICKI

"It's really hard to live with the long term situation of not knowing what is going to happen and having to adjust. Not having a Dad for the children has been terribly hard. Seeing other children with Dads that can go out and play and do things, and knowing they can't have that has been very hard for the boys to come to terms with".

Vicki is a sole parent and a part time teacher. Her husband suffered a stroke and is now cared for at a nursing home. He is a prisoner in his own body. She visits regularly, takes him home for weekends and attends meetings with staff. Her friends and her faith in God are the two things that keep her going.

Emotional Rollercoaster

My feelings about watching my partner recover- progress? It was very difficult because it's very frustrating. I mean... at times I've felt like he could just stand up and get out of his chair and be OK. He looked so well. But then at other times he got really sick. It's been doubtful whether he would pull through different situations. But now... we've just slipped into a pattern of expecting him to be the same. Bad things rather than good things happen. I shouldn't expect that, but I'm not surprised when bad things happen, put it that way.

Spiritual Strength

Up until recently I guess I had very strong hopes, which was strengthened by my religious beliefs. I still think Eric has recovered fantastically compared to what I was led to believe and I think that is due to God's influence. But I guess over the last few months I've got a bit downhearted because Eric has gone downhill again. Part of that is his own loss of motivation. Also, he's had a problem with clots in his leg and the doctors aren't very encouraging about how his body is coping with the long-term effects of the stroke. I guess that is also part of the business of having somebody with a long-term disability. You go up when they go up, and you go down when they go down. You just keep hoping that a miracle is going to happen and that they are going to get up and be able to talk and be normal again. But I guess at the back of your mind there has to be something that is telling you it could happen. But when you get these little things that go wrong that's when you go down again. But you always hope for that miracle. Always at the back of your mind you are hoping.

Family Lifestyle/Impact

It has had a huge impact on our lifestyle. It has meant that the boys have had to be restricted by Eric's coming home on the weekends. We can't be spontaneous and just go off to a football match or just go to the park or something, because we're dictated by what Eric wants to do. Mostly he just wants to stay around the house. So that's a fair restriction on them as little boys and on me who would like to do things with them. You know, we don't hold it against Eric. But it does certainly impact on our lifestyle. The fact that Eric wants to come home every weekend and is very upset if he doesn't get home also affects whether we can go away for a weekend for example. I mean I can only do those sorts of things mainly during holidays. I always try to get away for at least a week during the holidays. Otherwise I think I'd go mental with the routine of visiting and just having to be dictated to by Eric's needs. I try to always have one day where the boys can do what they like to do on the weekends and just be unhampered by restrictions. Then there is one day when we have Eric and we're restricted by what his needs are.

There's the effect on the boys' relationship with Eric, of course. They would love to be out kicking a soccer ball with him. They'd like to talk to him about things. It makes it much harder for them to talk to him because in many cases he doesn't react any more the way he once would have. They might try to start a conversation with him but not really get much of a response, so they stop. They find it hard to continue that sort of a father/son relationship.

As far as having friends around and that sort of thing, it hasn't really affected us because most of our friends have been very understanding. Many of our friends actually invite Eric along if we go there for an afternoon or an evening, which I think is really nice of them. My family has been very supportive, and they will have him around to their home or they'll come in occasionally and see him, so that's also a big help.

Telling People

It's not really an issue whether I tell people about Eric or not, because most people know Eric and what has happened and they ask about him. I guess that at one stage early on I got sick of telling people how he was doing. You get sick of repeating things over and over again. People want to be kind and show they are interested and care. It does get a bit overwhelming but mostly it's not really a problem. I think it's fairly normal for someone to ask after your partner, and whether they are healthy or not. People generally ask after your partner, don't they?

Impact on Our Relationship

Naturally Eric's disabilities have had an impact on our relationship. It's hard to say how - I guess I feel more like I'm totally relied on by Eric and the two boys. Nothing can happen to me. I have to look after myself. I have to be there for everyone. I have to be a mother and father to the boys. That gets terribly difficult at times. As for Eric, I have to still try to be his wife but I also have to look after him, and be concerned for all of his needs. He is totally dependent on me - I know that. That puts a fair amount of pressure on me as far as my own life is concerned. I don't exactly feel as though I have a life of my own at the moment. But I don't feel bad about that. A lot of people think I should do more for myself. But as long as my children are happy and I can see that Eric is progressing and he's happy, then I'm happy. If things go wrong then I'm not happy. Then it gets to be a huge strain.

I see myself more as a carer than a wife. My mother has this concern that one day I'm just going to fizzle out and not have any more energy and not be able to cope any more. The strategies that I've developed to deal with Eric's disabilities are a result of understanding him pretty well. We were married for nearly twenty-five years before he had the stroke. I can understand his moods. But my own ability to deal with his problems is to make sure I get a week away and just have a relaxing time with the boys to do things that I enjoy so that my body and mind have a chance to unwind and relax from the strains of everyday life.

Changes in My Life

How have I learnt to deal with changes in my life? I really don't deal with them very well. I just take one day at a time and sometimes everything banks up on me. I get very frustrated and upset and I wonder how I'm going to get through things. But time I guess helps you get through everything. My mother has been wonderful and my dad died of a stroke too, so that's been a bit hard. But I've tried to get my brothers to help with my sons and be a male role figure. I've also tried to have a male friend that could help with the boys. He was great, but he went off and got married. We're still friends now but it's different. He's got two girls that are sort of friends with my boys. But it's not the same for them. They used to look upon this chap as a real, sort of second father. That was good for them for a while.

Eric gets very frustrated and often he says to me "I'm useless", and I try and make him feel that he's not useless. He is still very good in many ways - he's got a wonderful brain and he comes up with some terrific ideas for the kids. He's always thinking about what he can get the children or me for presents, like for Christmas and Birthdays. The kids think that's great, and at times when I'm having trouble with them, I talk about everything with Eric and try and make him feel like he's still part of the household, still an equal partner. He'll often come up with some really good ideas for handling situations because he was a social worker and adolescents were his main area. He's still very good in that way. He gets very upset though when he sees that the boys would like to go and do something. He would love to be able to get up and do something with them, or he can see that I'm racing around like a maniac because I've got people coming for dinner and nobody to help me. Once, he would have been able to help me. That's when he gets very frustrated and I have to say "Now look Eric, you're not useless, you can't help being like you are, it's not your fault, it's just something we've got to live through and hope that God will change it". Basically, we have to just keep faith in God to bring this miracle that we want so much.

I've tried to help Eric through my belief in God and it has helped Eric a lot. But he's the one who has to deal with it and none of us could ever know what it would be like... to be like that for so long. But every now and again I have to be very strict with him and tell him off. He gets a bit self-centred and egotistical which is fairly understandable in his situation. But he has to realise that we've all got pressures on us too. Occasionally he doesn't. Other times I have to try to be very loving and caring, and make him feel that he is still loved and wanted. That's another reason for him coming home regularly. That helps him to feel that he is still part of the family.

Independence

My husband's need to maintain a sense of independence has been an issue. Right from the word go, I've tried to help him to come home as regularly as is possible, and also financially possible. With the access cab you can only get one visit a week basically and I can't afford to pay the full fare - it's quite expensive. The nursing home has been terrific because they bring him home once a week. He comes home and tells me what he wants to do. He must feel that he has some control over his life. I try to pander to that to a certain degree. But if he doesn't go with the rest of the family's wants then I won't always give in to it. I do try to give in to what he needs

He's a very determined character with the nurses sometimes. He gives them a hard time. But I think that's his way of exerting his independence.

Regrets

Back to the time of the diagnosis I definitely would have done things differently. I would have waited at the hospital until I made sure that the doctor saw him, the doctor that was supposed to see him. I took him there specifically because that was where his specialist was. I was assured that his specialist would see him but I found out afterwards that his specialist didn't see him that night. I was really cross about it. I should have been more forceful but you can say these things later. When you are in shock and not really knowing what is happening, I guess you presume that medics are doing what they should be. Also I had Michael (our son, who was only 2 ¾ years old at the time) to worry about. So, if I could turn the clock back, I would definitely have done things differently. We didn't know what the problem was until it happened. I just couldn't believe that the doctor could tell me that if only he had thought about it being in the head he would have treated him differently. This is a brain surgeon who is supposed to be top of his field. A stroke is causing problems to the brain isn't it?

Future Plans

Well, I can't see the future as being anything different to what it is now. As far as making terrific plans, my plans really extend from one school term holiday to the next school term holiday. That's my future basically. I would like to retire when I'm fifty, but I don't know whether I can afford to retire at fifty because it was Eric's and my plan that we should send the boys to private school. The only way I can keep them at private school is by my working. I don't think I can see the future as I would like it to be anyway.

Difficulties

Difficulties that have been a problem to me are things like maintaining the house. There are lots of things that need to be done, such as painting and gardening. Just general maintenance work that Eric would have done, and wouldn't have had any problems about doing. His role was to be outside doing that sort of thing. My role was to be in being a house-maker and mother. That's a huge change for me because it means that I now have a new profession to learn. I have to try to be a father to my boys, which is not something that comes easily to me.

Self Help Groups

The other issues I found earlier, were that people would say, "Go to a support group". I had a social worker who was supposed to be there to help but I really didn't think that they were in tune with my feelings and my situation. I just didn't really see how anybody could help me. For me to go to a support group would have meant I had to worry about whether my children could come with me. I was always having to get them looked after when I went to visit Eric anyway and that was just another added burden on my mind as far as having to organise myself to be able to go to a support group. Perhaps if people could have visited me. People who had been through something similar. Maybe if I could even have gone to something at the nursing home where people in those situations could sit around and talk about their problems. Maybe that would have been better for me. But I didn't feel early on that anybody had much idea of my problems. I don't really think that there were stroke carer support groups as such at that time. I do believe that there is one now which I saw advertised in the paper. I did think about going along to that at one stage but again I was put off by the fact that I would have to find someone to look after the children.

Helping Professionals

I don't know how the social workers could have done it differently or better, but I just felt that I needed more help sorting out my affairs. As far as my financial situation \- I really needed to know more of how I could go about getting a pension or getting financial support for Eric and myself. I got pointed in the right direction, but I just needed someone to sit down with me and help me work through it. I didn't have that person. I had so many things happening that it took me several years to actually get it all worked out. By that stage I wasn't entitled to anything because I'd gone back to work. I needed a social worker to sit down and go through the forms with me and help me fill them out, instead of sending me into the Department of Social Security to get mucked around. You know they gave me the wrong forms and then sent me home to fill them out. I brought them back and they made me fill out different forms. It just drove me mad. I didn't need that at the time. I was just under too much pressure. I also felt that maybe social workers could have perhaps talked more about these sort of things earlier on to make me think more about what was happening.

I really didn't have a good cry for a long time. Not that I'm a great crying person. It used to upset me dreadfully to go and see Eric in hospital. That was awful because I felt like he was just left, dumped. He would be slumped in his chair and falling out of his chair and not being properly looked after. And so going to the nursing home was great because I felt that he was really getting looked after properly there. They were trying to get a communication system going with him and everything. In the early days I though this nursing home was fantastic. I do think that in the last three years that it's got a lot worse, but I don't think that is the nurses' fault. I think it's the hierarchy's fault and that's why I'm on BINSA (Brain Injury Network of South Australia) now. I don't even know whether it's Julia Farr hierarchy to blame, or whether it's the Health Commission. We seem to get this tussle between the Health Commission and the hierarchy as to what is going on and the nurses union and all the rest of it.

* * *

VICTOR

"It was difficult to find the right approach to helping my partner deal with disabilities because I was always trying to find new ways, or find a new life I could tell my partner to try, to diffuse a particular situation or help her self esteem".

Victor's wife, Jenny, died of Huntington's Disease one and a half years ago. He cared for his wife before she was too sick to live at home. Years before her death, Victor had been a single parent looking after their teenage son. He works as a self employed abrasive blaster. Since Jenny passed away, Victor has been preoccupied with work. Still, Jenny is always on his mind and not a day goes by without him thinking of her.

Strategies

I have developed not so much strategies, as a change in lifestyle. Before I would stay at work a bit longer but in this case I couldn't, I had to come home as soon as possible. Not so much a strategy but just organising your life to suit the position at home.

My partner's need to maintain some independence has been an issue for me. I thought that if she could maintain just a mental idea that she was independent to a certain degree, it would help her attitude. If she believed that she was independent in some things, not all things. Allowing them to believe that they are still capable of doing this or that, just getting them to believe, is best.

Past Reflections

I can't think of anything I would have changed. Maybe one little thing. Maybe I allowed my partner to try to be too independent. Maybe I should have got in and done more rather than let her go on believing that she was capable of doing a lot more than she was. Maybe I should have stepped in and said, "No, you can't do that". That's about the only thing I would change.

Frustration with Helping Agencies

It all starts from the top because the Government is running the institutions and the Government is running the hospitals. If you can't get them to do what needs to be done, anyone below them is not going to do it. I can speak from the different times that I've spoken to different people. They pass the buck, up to someone higher, and someone higher passes it up to someone higher. So it's going to be the Government. They are saying that we can't do this and we can't do that because of funding. Well, who is supplying the money? Well, it's this department. But this department is controlled by that department, and it all goes back to the Government of the time.

I've been on that argument for years - Multiple Sclerosis, even AIDS... because people are aware of these illnesses, they make more noise, Governments take notice of noise. You mention Huntington's Disease (HD) – someone comes and doorknocks and wants a donation for HD, you say, "What's HD?"

Guilt and Shame

In our generation, the generation prior to mine Disease was hidden. It was associated with guilt and shame. It shouldn't have been as those people are not to blame; it is just simply inherited. So, if people keep hiding it, no one's aware of it, nothing gets done about it - you can't get dollars for it because people handing out the dollars think it's only a minor problem. That it's not a common problem, it's not a well known problem. I believe that it has to be spoken about, publicised in the right way.

* * *

BILL

"It hasn't changed anything. We still love each other and that's the main thing. We just stick it out together, and make the best of it - that's all we can do. It certainly doesn't affect us in any way".

Bill has been a full time carer for Birgit, his wife, for the three years since his retirement. He now hardly finds time to go fishing on his boat, which he enjoys. The several weeks of respite care that he gets a year enable him to keep caring for his wife, a Multiple Sclerosis sufferer.

Impact

The disability has had a big impact on our family. My daughter had to move out of here for a start, because we didn't have the room in the house for her to stay. Luckily, she was able to get a house. She and her friend were able to buy a house down the south coast and they are all right down there now. You need so much room for people with disabilities, what with all the stuff you have to have to cope with their disability.

Well, you certainly learn that you can't do anything any more. You are certainly tied down. There's no way you just say, 'Well, I'm going fishing dear, I'll see you tonight!' or that you are going away for a couple of days, or a week or something. I mean, all that sort of thing is out of the question nowadays. It certainly changes your life. I mean your social life and all that - you can't go golfing, you can't do anything. You've just got to hang around the place all the time because they need a lot of attention. My wife does anyhow.

My wife is coping very well with it I think.

If I wasn't there and didn't love her, I don't know how she would get on then. I mean, you've got to have a lot of affection for people in this condition. There's no doubt about that. If you haven't got the affection and love for them, well I mean, a lot of people couldn't handle this sort of thing. But it certainly doesn't worry me. I'm not stressed out with it in any way at all. I can cope with it. I've been looking after her and the first two years was on my own. I never had any outside help or anyone come in. As her condition deteriorated though, I've had to have a couple of hours help in the morning to cope with the showering, and she's got to have some treatment as well, like we've got to lift her in the mornings because of the way her legs have gone. They've locked over the top of one another. We try to straighten them out a bit and try to keep her legs a little bit mobile so we can get her back into the wheelchair. She's been in the bed now for five months.

* * *

MARILYN

"It devastated our lives totally and absolutely. It didn't just devastate Terry's life; it devastated mine too. I lost everything. I was working in the accounts section at a government office, it wasn't a high position or anything, but I enjoyed my work and even after eight years of retirement I'm still floundering because I have no framework in my life. I've lost the routine that you have to work where certain things are done at certain times in certain ways and... my life's an absolute shambles".

Marilyn's husband, Terry, suffered a stroke, and Marilyn resigned from work to care for him at home. She regretted that decision, made eight years ago, but felt that her life could not be changed unless she could obtain more professional assistance, which was not available to her.

Caring Journey

Sometimes I'd look at Terry and get that cold, horror feeling, at the terrible things that had happened to him. He used to be a big strong upright man who loved to talk about anything and everything and the stroke took all of that from him. He has severe aphasia so he can barely put two words together. He can manage little things in speech, and if I've got somebody here and we're having an abstract conversation, he tries to join in because he can understand what we're talking about but he can't get out what he wants to say. "Talk Back" group (run from the hospital) has done a wonderful job in making him more able to express himself, but sometimes I 'd think it was him and think "you poor devil - you poor thing". It's very hard and it's very painful. I try not to think too deeply about it just live life on the surface. If he's having trouble with something I go and help him. I try not to think about how it could have been, or how it should have been if he hadn't had the stroke. It just leads to too much sadness if I keep thinking 'if only' ... it doesn't work.

Maybe I'm doing something wrong, but I think you'll find that most people feel the same way. I will not abandon him because he's my family. It's my responsibility to look after him the best I can for as long as I can. But he's not my husband! The relationship is chauffeur, maid, nursemaid, and secretary - there's nothing we share that we used to share before he had the stroke. We may perhaps sit down and watch a video together; that sort of thing. He can't play cards the way he used to do. He can still play chess though. I hate chess. Our relationship is dead. I mean, we still have a friendship and an affection. But he's not my husband. He never will be again because that person died when he had the stroke and such. I look back in that way. Not to look back to how it was though, and the fact that we should have still been that way. I see older couples sometimes when we're out at shopping centres holding hands. Terry and I will never hold hands again. Because he can't walk without his stick, or else he's in a wheelchair.

Powerlessness

I can't get on and build a new life. Because the body is still sitting in that armchair to remind me of what I've lost. Our life isn't organised. I have no routine for doing anything. Everything is on an ad-hoc basis. That's the pattern I got into when he first got home. I can't get out of it at the moment. It's the same with him ranting and screaming at me if I dare to say no or counter what it was he wanted in any way. It got so that if he asked me a question I'd be sharp in answering him, waiting for him to attack me. The non-abuse lasts longer than the abuse. I could cry at the drop of a hat. He's not my husband and he's not my child, he's just somewhere in between.

It's a question of getting through each day the best way you can without cutting your throat or cutting his.

There is nothing I anticipate with pleasure, nothing, not a thing. It goes with invisibility. I don't want to be invisible. There's nothing in my life that I can see to look forward to.

Changes

He doesn't work. I don't work. We have no friends left from before the stroke - none. We have no male friends at all. We sometimes see my brothers and their wives - not very often. Terry suffers from bladder complaints quite often. We can't go any distance unless I know where there's a toilet. You can't just go to the pictures without making phone calls. It's just not worth the effort. I just don't have the energy that's required. You can't go out to dinner. I mean we do occasionally - not very often. Sometimes we go to the local club or footy club for lunch or something.

Terry's personality has changed because of the stroke. You don't know whether he's going to go through a tantrum in the middle of West Lakes or something. Where he used to be bossy, he's now a bully.

As for doing things by myself, I'm not supposed to leave him. I spend my life with him. I used to read. I can't concentrate to read now. Terry goes to bed after tea and he'll get up two hours later. He's had a bit of a sleep and he's rearing to go and stay going until 2-3 o'clock in the morning. By the time he's gone to bed I'm tense. I want to wind down and I don't feel like going to bed because I'm strung out. I end up staying up until 5 o'clock in the morning. I've changed my lifestyle so that when he goes and lies down to have a sleep, I have a sleep too, and for me to get eight hours sleep in a stretch is an absolute luxury. Because he sleeps during the day, he doesn't feel like sleeping at night.

Meals are an absolute nightmare. He doesn't want to eat home cooking. He wants take-away or to go out. I say to him "What are you going to have for breakfast?" He wants something unusual!

Relationship

Our relationship is dead. That's not my husband sitting there. That's some cruel caricature of the man I was married to. He can barely say my name. He doesn't say "Good morning!" he doesn't say "Good night!" He'll say please and thank you if I remind him.

We haven't had sex since he came home. I don't want to have sex with him. We have a kiss and cuddle occasionally. But I'm not interested. So the marriage died when he had the stroke.

Past Reflections

There wasn't very much I could do differently. Although the doctors didn't say it was caused by this, that or the other, he had four strokes against him in terms of diabetes, high blood pressure, overweight and unfit. I don't very often think back. Terry was the only one who could have done anything differently to possibly prevent the stroke. But it doesn't pay for me to think back.

I might not have taken him home so soon. I still don't know, because I was desperately lonely. Even though he's different from the way he was, there's still enough of the old Terry there for me to not be so lonely. But we're both very lonely. Because one of our biggest problems, with a situation like ours, is isolation. We have no friends left from before the stroke. I don't know whether it's them or us, because Terry has changed, undoubtedly, because of the stroke. I've had to change in a way. But a lot of people can't take the visible proof of what could happen to them, and we have very few friends because there are not a lot of other places we could go. Well, Terry won't go to other people's places, except my brother's. If I'm not supposed to leave him, then I can't go without him.

Carer's Group

I used to go to a carer's group. I was the only one from another district. It got so much of a hassle to make sure that Terry would go to bed in time for me to finish getting ready. Because I wasn't enjoying the meetings or getting any real benefit from them, I quit. The other thing that made me decide to quit was because I was outside the area. Every time the coordinator said "the Council has arranged such and such", she'd turn to me and say "This doesn't apply to you because you don't live in the district". I got sick and tired of being reminded that it didn't apply to me. So when she rang up late last year to say that they were incorporating another group (I think it was with parents of intellectually disabled children), I said no.

Terry doesn't mind me going out without him, but I find that when I'm feeling low, I don't like going out without him. I'm used to having him sitting next to me in the car. We've worked it out now that I can pretty well understand the things that he's pointing out; funny number plates, unusual stobie poles. Stobie poles - it took me three weeks to figure that one out. In the middle of an intersection he'd be trying to point something out to me. He couldn't get the word out. His eyes see different things to what I would notice. I would notice a funny colour on a house or someone walking a dog. He would notice a mechanical type of thing, like a different type of stobie pole. Now we seem to have worked it out. I prefer to go out with him. I would prefer, when I do go out without him, for it to be something I enjoy. The carer's groups weren't enjoyable. There is some talk about starting one for people in our area. But I don't know if they ever will or not.

Need for Information

Professional people don't know what carers want because quite often carers don't know. I can sit here and I know that there must be better ways than the way I'm doing things. But I don't know what to change or how to change. I don't know. It's too much for me.

Most professional people only see the "client". That's the way the system has been set up. It's only now with organisations such as the Carer's Association, that carers are starting to mean something. Maybe one day the Government will think they mean something too.

* * *

ROD

SPECIAL MOMENTS SHARED

AN INSIGHT INTO HUNTINGTON'S DISEASE

* * *

Five Poems

Rod knew Mary since she was three years old. He was not told about the family history of Huntington's Disease when they were married. However, he had been suspecting that she suffered from that diagnosis for ten years when she was finally confirmed as having the disease. He came to accept her inevitable and horrendous decline as the illness progressed. Throughout the trauma of the emotional journey, Rod alleged he had lost the love of his children, his social life, family contacts and was stigmatised as a dole bludger. It was an inter-generation family tragedy.

* * *

IN DESPAIR

Where Oh where are the fantasies?

That roam the realms of my mind.

Where are the dreams I relied upon?

To help me pass the time.

How difficult it is to face life:

Where are my imaginary friends?

Don't leave me now when I need you so,

I'm not yet on the mend.

Lady Luck where are you now?

Good fortune never enters my door...

Those that I've loved now stay away,

Close friends come no more.

The lonely heart is crying out

A silent weep - a heaving chest:

The reality of the life around

My fantasy friends - my most welcome guests.

19 February 1993

* * *

THE PLEA

Silence greets the weeping heart

Futility abounds

Solutions blurred by infinite boundaries

Despair all around

Quiet moments so precious

Absorbed all alone

Memories that find me

Always at home

Help me dear Lord

Keep me in touch

You know the answers

I need so much

My burden is heavy

The body is growing weak

My sanity Lord is questionable

The future looks so bleak

Show me the way in my silence

The heavy heart please mend

Give me the strength that I need so much

Let solitude be my friend

May 1993

* * *

THE DEATH OF A FANTASY

Cool, calculating, turmoil

In self destruction mode.

Chosen words, so few words,

A tortured mind set free.

The death of a life

Imprisoned in my mind.

Freedom for the fantasy,

Death's gate looms.

The Man from La Mancha moves

Sweet sounds of South Pacific,

That enchanted evening, far away

The bell tolls-silent ears,

Tears cannot be found

To destroy a life - a tormented life.

Forget sound advice,

Deaf ears meets your call,

Fantasies fade - realities loom...

How sweet the morning rain

Walking through the storm:

I self destruct - it was to be

Imprisoned mind - the shackles free

I detest the man that is I.

A night of ramblings of an insane person - I know what it means

July 1993

* * *

LIFE'S FOOD

Oh! How I love the serenity of night:

Those precious hours when most is quiet

And those fantasies, that emerge from me,

Of a lifestyle far from realities.

When all is quiet, when all is still

My mind frees me of a controlled will.

As such a man I could wish to be

When my mind takes control of me.

And for what appears an eternity

I'm allowed to escape reality,

A hero in a different land,

The foundation truly built on sand.

For as sure as light welcomes the day

My hero being just fades away,

Like a coward - concealed from sight -

To manifest again another night.

And those women that I've loved the most

In this peaceful mind play host,

To succumb to my every demand,

And delight me with their youthful charms.

A thousand other sweet delights

Visit me most every night,

And carry me far away

From the realities of the day.

But I'm thankful for what it's worth -

As daylight brings me back to earth -

That I was allowed to dwell with time

And roam the realms of my mind.

19 August 1992

* * *

INNER STRENGTH

Oh those troubles that burden me,

So heavy of heart from life's miseries,

Any happy thoughts locked in despair

Unable to emerge, as so few care.

Why I deserve to suffer so

In such a degrading way:

You, my God, you surely know

For what sins is this my pay.

If I convert this bitterness

To always wear a smile,

Will you, my Lord, help me through this mess

And carry me for a while?

At what point does a desperate man

Decide to end it all?

Will you stop me, Lord, before that time -

Are you listening at all?

Do you see in me inner strength

That I alone could carry the task?

Do you cover me when my day is spent -

Are my prayers too much to ask?

I question you, Lord, on your motives,

Why I must suffer each day:

For there has never been a more heartfelt pain

Than a lost love fading away.

2 September 1992

* * *

DIANNE

"John often says that if I hadn't been there pushing him right from the beginning and supporting him, he wouldn't have got so far as he has. He has made progress beyond anyone's wildest dreams. I'm glad that I had the physical strength and the family situation that allowed me to spend the time with him".

Dianne remained positive when her husband John had a stroke, despite having to cope with numerous role changes in her family. She went back to work part-time as a teacher after John returned home. In telling her story, Dianne showed enormous understanding and love for her husband. Her faith helped.

Initial Reaction

My husband had a stroke about 14 months ago. When he first had his stroke I denied that it could be as serious as it turned out to be. I thought, because he could speak and he could respond to questions, that it couldn't be as serious as some people seemed to believe that it was. It turned out to be a very significant stroke. His whole side was paralysed. He had left-sided inattention, and he was very confused mentally.

It was a big knot in the stomach. I just wanted answers, but of course no one could give me answers then. It was too early. Everybody is different and responds in different ways.

The impact on our family was huge, especially while John was a resident at the nursing home. We've got teenage girls at home, and married children. The girls at home had to cope with lots of phone calls because I was at the nursing home most of the time. They were neglected as far as meals, washing and that sort of thing, but they survived that. I think they felt that I had rejected them in some way, but they could understand why. We had some precious times together too, some very close times when we talked a lot about what would happen.

Lifestyle

In some ways John's disability has restricted the family lifestyle. But in other ways he is more with us now than he had been before. He was always very busy and out working and doing his own thing, and so was I. We are perhaps spending a lot more time together. The youngest child, I think, resents the fact that her father is often in the car when she is taken places. It's not very easy for a fifteen year old to share a disabled father with the friends that she's trying to impress. But she is still very loving towards her Dad, and does lots of things. Both the girls will help him to dress and that sort of thing when he gets tangled up. In some ways it has been very difficult for them. In other ways they've managed very well.

Impact on Relationship

When I watch John I get waves of sympathy. I know I shouldn't be too soft with him. But it is very hard to draw back and give him the independence to do things for himself. In the early days I had to busy myself with folding towels or rearranging bathrooms or making beds when he was trying to dress. Just so that I gave him the chance to do things for himself. But now he is able to go off and be independent. It's only if he gets into trouble that he calls for someone to come and untangle the mess. When I watch him I secretly get a gut feeling that says "Why can't he be the way he used to be?" It is very hard to hide - you just think he's this person; the man he used to be. Then I look at his face, and I know he isn't.

In many ways roles have been reversed. He was probably always the major decision maker when it came to earning our living and choosing types of work. Whether to renovate the house or whatever had to be done. Now the decisions are mine and his confidence hasn't built up to the level where he will make many decisions. Although he is making more now than he used to, there are times he digs his heels in and says, "No, I want to do it my way". That's when I pull back and let him. But as for small everyday things, like do I call the plumber to change a tap washer and that sort of thing, I just make those decisions, particularly if I want the experts in. They'll do it in five minutes where it would take us three hours of anguish. Those are the decisions that I make now.

Sexuality

Sexuality is an issue because of John's lack of movement, which has made it difficult. But it is still a very caring and loving relationship. Physically it gets a bit boring because there are no changes in positions and that sort of thing. But as John becomes more agile, I look forward to those changes too. He feels guilty because he's not the partner for me that he used to be. But I try not to let him see any disappointment. Although I'm usually honest with him. I hope I'm not overboard about my honesty. It's usually a straightforward discussion or statement. I think the biggest part is his disappointment and his feeling of guilt - that he's failing me in some way. I don't think he is because I'm at that age where it's not all that important anymore. It still happens occasionally, but maybe I've learnt to push it into the background. Besides, I'm very busy and I get tired. It's easy to find that excuse.

Strategies

I've busied myself with other things like folding towels to give John independence. That's one way I do it. He's a fairly easy person to be with. He doesn't get easily frustrated. He gets frustrated but doesn't become angry with me or with himself; he just talks about it with me, which I really appreciate. In the past he hasn't been an openly communicative person. But as he's got older he has become more reliant on me for discussion. He is more open with his feelings than he used to be. I'm really pleased when he expresses himself. He says, "Oh, it's been a really slow day today. I wish you'd been here, we could have done some things together". One of the strategies I've developed is that I have returned to work half time. Once I get to work I haven't got time to think about what's going on at home. I have learnt to rely on other people who will come in and make sure that there is wood in for the fire. John can manage his own meals now. So I usually leave it prepared and he can heat things up in the microwave and make a cup of coffee and manage to get them onto the table himself now.

Family Changes

There have been huge changes in our family because of the changing roles. I've become the bread-winner now. I've had to make various decisions with a business and a farm. But I feel that I'm as capable as anyone else of making those decisions, even allowing myself to make the wrong decision at times just to get by. It may be the wrong decision to lots of people but to me it was the right one at the time. I have to be careful not to put myself down if some things do go wrong. Sometimes I have to take a big deep breath before I speak.

Difficulties

It was difficult to find the right approach to help my partner. Even though he has been very appreciative of the things I have done. He does realise what he has put me through. They are his words. He often says. "I wish I didn't have to put you through all this". I have had to call upon my past experiences I suppose, to think logically and make things lighten up a bit at times and to try and think positively. It's very easy to think about what can't be done any more but there are lots of things that can be done. Very often John will say, "I can't do the things I used to do". I have to counter that with "Yes, but there are lots of things you can do that we never thought you could do again". I think he is learning to think more positively about those sorts of things.

The Future

I can envisage the future. It's getting better. In fact somebody did tell me very early on that there could be some positive changes in our life because of John's stroke. I couldn't believe that anything good could come out of this. Now our relationship is a much more communicative one. We are doing things that we both enjoy doing.

We have found out where the good places are to go with a wheelchair. Wayville Showgrounds is excellent, plus various shopping centres are quite comfortable to go. We are finding our way around in a practical sense. I'm finding that the more we go out in the community, the better accepted John feels by people who knew him in the past as just a very strong, a very masculine person. At the beginning he felt as if he had changed so much that nobody would relate to him any more. But I think because we've made a practice of getting out amongst people and going to anything we can, whether its films, quiz nights, you name it, we're in everything to the point of almost being exhausted. Realising that we have to be a bit sensitive to things like tiredness and we just have to find the right balance. John is feeling much more confident about being out in the community.

All in all, there have been some good things that have come out of this. We've learnt to accept people with disabilities. I think we've both learnt that physical disabilities don't mean a different personality or a less than full mental capacity.

* * *

MARGARET

"I came home after seeing him in the nursing home where he is at the moment, and cried my heart out. It was really watching your husband go down-hill and not being able to do anything about it".

Margaret thought ten years prior to her husband Peter's diagnosis that he could have Huntington's Disease. They made a joint decision not to have children after marriage. Their adopted children are supportive and appreciative of what their parents have done for them. To Margaret, Huntington's has its challenges and rewards.

Choices

We had known before we were married that Huntington's Disease was in the family. We were lucky that way as we could make an informed decision to get married and not to have children. With that in mind, it was a relief when Peter was diagnosed because I had actually known for 10 years prior to it. I'd seen signs of it, but Peter was in denial. Actually, I was quite relieved when it was confirmed that he did have it. From that day on he accepted it and I wasn't feeling so cross with him for not accepting it. I think from that day on we decided to live our lives to the fullest, and we have!

Feelings

Very, very sad. Peter seems to go downhill very quickly, then plateaus out. Then he stays that way for quite a few months. Then something happens. Whether its a little bit of stress or something, he'll seem to take a nose-dive again. I came home after seeing him in the nursing home where he is at the moment and I cried my heart out, because it is really hard watching your husband going downhill like that and not being able to do a thing about it.

Changes

The changes to our lives have been quite drastic. We've lost all our friends, except one couple. We don't see them that often now either. They find it harder to see Peter's movements than the family does. I really feel I am very isolated now. My life is really just me and my children. I don't blame them at all because they just don't know how to deal with it. It's easier not to be embarrassed by having Peter around when you go out.

It was actually only when Peter got so ill last year that my health suffered. I had to take a term off on stress leave. Up until then I was trying to hide from everyone. I didn't like telling people about it. It was, for many, many years, a big issue for me. I couldn't accept it. I didn't like going out with Peter either in public. We'd do lots and lots of things together with the family. The children are absolutely wonderful with Peter. We lost our friends, but perhaps it was my fault as well as theirs. I suppose I was embarrassed going out with Peter, particularly to shopping centres where his arms would hit people. They'd all turn around and glare at you. It was easier to stay home than to go out and face the real world, and keep Peter to ourselves as a family.

Past Reflections

I think right before we were married, we kind of planned what we wanted to do and we've done it. We've had a couple of lovely holidays. We'd always go away at least once every three months. We'd spend a night in a hotel somewhere nice in Adelaide together, and all those things and now as we drive around, we always talk about that place over there that we stayed in and what a wonderful time we had. I don't think I would have done anything differently. We've got lovely memories.

What Helped

I'm trying to teach Peter how to answer me "yes" or "no" with one squeeze of the hand for "yes" and two for "no". We practice that in a joking way when we go for drives and that. Although he can still answer "yes" and "no", that's about all. I know that he's hearing me and understanding what I'm saying so I know that's something I'm going to find very, very difficult when he can't communicate with his voice anymore. Whether it will work or not, only time's going to tell. But we are practicing it. I'm very confident that for a few years, at any rate, he'll be able to talk to me that way. Watching his sister, for about the last seven years, she's been in a vegetative state in a nursing home. I cried and cried and cried every time I saw her, knowing that Peter's going to end up like that. I tried not to think about it, but it is going to be hard, seeing someone you love just lying there. This is where I think euthanasia should come into it, because Peter really wants it at this point in time.

* * *

HELEN

"Reach out, and help will be given. Pray for the strength and courage to be given to you, to do what you have to. God never leaves us alone. At all times he is carrying us, though we are not aware of it. Be proud of yourself and your partner, and continue to dress, wear make-up and do your hair as you used to before. Just never lose your sense of humour! Never lose your sense of humour or hope. Never!

Helen's health suffered when her husband had a stroke. Helen was aware of the pitfalls of stress as a health worker but when it came to setting priorities, she put herself second and her husband first.

Impact on Health

For the first few months I never thought about myself, it was just Terry all the time, I put myself on hold and then I started not feeling well. I started to get ulcers and things. My body began to scream and I'm trying to do something about myself now. I saw a counsellor and she was very, very nice and good, and I know I can go back any time I need to go. For me it's just finding time. I started doing that, started making time for myself.

I'm not sure whether I've learned to deal with things or not. I just do things when I see them; they just get done. My first priority is Terry, always Terry. I suppose it's the way I am, being female and Greek. I'm a Cancerian too; Cancerian people always put their families first. They mother people and look after people. It's one of my traits. Yes, it can change, it just has to be put into practice, and I haven't gotten around to doing that. It's a slow change for me in that area. It's always been my role to mother things. I don't put time away for myself because I feel guilty for spending time on myself.

A little bit of my background: My mother died when I was seven or eight. I was the eldest of three girls and had an older brother, and being the eldest girl, a lot of responsibility was placed upon me. I've grown up always having to take charge and being responsible for the smaller people and the house, and everybody else.

I have started taking Tuesdays off from work. I don't do any work on Tuesdays, like massage work, but I am studying another course. I have to do a certain amount of hours a year of compulsory study. I'm doing that, but now that's finishing, and I'm still going to take Tuesdays free time for myself, and the little time off I have for myself on Tuesdays after study, I just spend sleeping, because I need the sleep.

Sexuality

How do I feel? I don't know. I'm missing my marriage. But there's still a warmth and love there. But I'm missing the physical side. The worst part is sometimes when your body's screaming, you feel guilty that your body should be feeling this. He tries to cuddle me with one arm but I feel I might be placing a strain on him.

Good Changes

I think he is coping, but we haven't really discussed it. We haven't really talked about any of that. We just concentrate on the surface things. One good thing that has come out of this is that he has curbed his temper better. He used to fly off the handle very easily, he is now controlling that. That's a positive. He has never got violent with me, he's a gentler person. There has been a big change in him in many ways, he's a nicer person. Life has always been good to me. I know this has been a big change in our life but who knows the deeper meaning of it. Who knows why it has taken place? There's a reason for everything that happens in our lives. There's no point in sitting there blaming God or life or anything. Life is the same for everybody. It's each person's way of handling the situation. And out of every situation, on a deeper level, something good always happens for that person. I can't complain about life, it's always been good. The lessons I've had to learn have been very valuable and important lessons. Even though at the time I didn't understand them. Human beings have chosen to learn through pain.

Looking to the Future

Now that's something I'm not too good at the moment. I'm not dealing well with that one because I don't know. I sometimes feel like I'm walking on egg shells. I can never be sure that at any moment Terry won't have another one. I mean, even the statistics say it's a possibility and I've come across people who say, "Oh, many years ago I had a stroke, and it's twenty years down the track". I can never feel safe. For want of a better word, I'll say 'safe'. My security blanket has been taken away. I just go day by day. I don't make too many plans in the future. That's the only thing I can do. Even as far as Christmas, I want to book a trip to go to Melbourne but even that is too big a distance for me to make a decision on. So perhaps I am not dealing too well with that one.

If I didn't have my sense of humour! When things get a little bit tough and Terry gets a bit naggery or over the top, I just laugh things off with him. I turn them into a joke, and then he laughs, and has a good laugh about it too. So, that gets me through the days with him. The most important thing of all, which I don't do too good myself, is to take time out to look after yourself without feeling guilty. That's number one on the list. There is help out there, you just need to look for it. With friends and people, you win some, you lose some and some you don't understand. You haven't got time worrying about their little funny ways. You just go on and do what you have to do. Don't worry if friends get a bit funny and don't understand. If that's the way it is, that's the way it is. You'll find other people who do. You have to have faith of some kind. Never lose your faith, whatever it is. I think there was a little bit of denial, hoping that he's going to come through this. I didn't really go into the full meaning of what a stroke involved.

* * *

Caring for a Child

BLOOD IS THICKER THAN WATER

Parental care givers

Over sixty per cent of relative carers are parents. Mothers outnumber fathers in excess of two to one. Two obvious reasons are: firstly women often live longer than men do and secondly, women find it easier to fall back on the nurturing role. Many feminist writers have emphasised that women have been taught to put the needs of others before their own. They have commented on it as if it is a bad thing. But the ability to love and to nurture, to take on a role of loving, nurturing and giving, which is still very much part of female culture, is one of the greatest strengths and sources of happiness for women. Many men have nurturing skills, but they are not as central to male identity as they are to female identity. In many of the men I met these skills had been pushed to one side, or were not very much part of daily life. Fifty per cent of this majority of carers self assessed as lacking in energy. Sixteen per cent of this older group is at risk of poor health. One reason is that head injury is a long haul. A young person disabled in his /her twenties may have healthy parents to look after them. But when he/she reaches middle age, their parents would often suffer from poor health, which is associated with old age. No wonder that one of the dominant themes expressed was powerlessness. As parents they would have exerted great influence in nurturing and teaching their children. In reassuming this role they noted the relearning of old normal developments such as walking and talking. However, instead of the joy of witnessing their child taking their first step or uttering their first word. This time it can trigger off frustration and sadness. It is a time of remoulding old relationships and reshaping new ones. For many this burden is shared among family members. For younger people who have had antisocial practices, or companions or relationships not approved by the family, professionals noticed that denial is a common feature among families. Relatives need time to move through this denial stage; as often it is a mechanism that shields them from the pain of reality. Family issues can worsen, reappear, or disappear after head injury. Bringing them to the attention of professionals can sometimes alleviate the problem /conflict. Hope sustains family members who might otherwise be overwhelmed by the enormity of the implications of the brain injury. Therefore as professionals we should always leave some realistic hope for families.

Autonomy versus dependence

Over half of the people interviewed found that independence, on the part of the head injured person, was not a serious issue for them. It is probably because they developed skills such as adaptation, flexibility and acceptance over time as a carer. As such they were able to grow and develop together with their loved ones

* * *

MAX

"I feel very happy when I see her improving every day. Little by little – not fast – it's slow but sure. She has never gone back".

Max and his wife were extremely shocked by the extent of their daughter's head injury after her operation for aneurysm went wrong. They had cared for her in their home while keeping her house in good condition for her to return to live in it one day. Max has had a stroke after two years of caring, but remains undeterred in his commitment to his daughter. His wife, Helen, died two years ago and Lynne is now living independently.

You never expect it to happen. When something happens to your kids when you're forty years old, it's hard to comprehend for a while. I don't think I'll ever get over the shock of those meetings with doctors.

I don't think I'll ever get over when the surgeon came around, but I look at it as a positive that I've learnt something, and might be able to help somebody else. Everything has a positive angle. I've never believed in looking on the down side of anything. This is maybe more so now that I am on the outside, just sitting here and watching – seeing the tiny improvements. I've been getting her to walk and she is swinging her arms and everything. I take her to the hydrotherapy pool on Tuesdays and she goes to the Swimming Centre on Mondays with a carer. The Physio has said, "Do you know how much this young woman has improved?" and I said "Yes, I do it everyday with her". She said, "Yes, you do too".

There are a lot of things that are available. No one tells you about them but if you go and look around and poke your nose in, you can find out what's available. I just rang Domiciliary Care and they have been very helpful. We needed a wheelchair and I asked if I could hire one. The lady said, "No, we'll give you one". So we went to see them and they interviewed us and said they'd put the wheelchair in the car. The woman asked "What about showering?" and I said she sits on the chair in the shower. Helen used to help her. She said they would bring around a chair and they did – they brought around a proper chair. She is showering herself now, and we don't need to help her anymore.

Attitudinal Change

It's a terrible thing. I never took any notice of aneurysm before, but since it has happened, you always try to preach to other people. You say "Stop ruining you health", "Don't drink", "Do a bit of exercise", "Don't smoke", "You're killing yourself". We've got an exercise bike in the kitchen and I went and bought her one of those 'slim riders' the other day. The Physios at Dom Care say that they are good for calves, thighs, back, shoulders, everything.

It is affecting my lifestyle in that I am much more health conscious. Yes. I've always been - every night I used to go out for walks. I go for a 5km walk every morning. Then it got so I couldn't do it because we were getting up in the morning, getting breakfast and then straight down to the nursing home and so I had to do exercise at home on a treadmill.

* * *

EUGENE

"One thing I feel that did help us was that we were both church-goers. We're Catholics. We had faith. I can't explain how it helped but I feel it did. We put a lot of faith in God but at the same time we realised that God can't do everything - it's up to mankind to play his part. We've always had a strong faith, whether it became stronger or not I don't know. But it certainly didn't become weaker. We don't blame God for the accident. He wasn't driving the car. We just accepted it as one of the things that happened".

Eugene is an elderly widower who is retired from a management job. He stated that his Catholic faith helped his family cope with his son's accident when aged seven. They were the first ones at the scene. They have maintained a positive attitude ever since the tragedy. Eugene visits regularly and has his son home on weekends.

Advice to Carers

When an accident victim - someone who has been seriously injured - enters hospital, and the parents see that child for the first time, many of us go to pieces. While that's understandable, people must really pull themselves together as quickly as possible. It is very, very important to take control of yourself early in the piece. Just accept that it has happened. We never ever denied that it had happened. We never wondered why it had happened to us, and not other people. That never came into consideration. It happened to us and we took it from there.

The next day, the second, was the worst day. He was in intensive care, an oxygen tent and packed in ice. My wife would go over in the morning and the afternoon and I would go immediately after I left work. This went on for about eleven weeks. It was a strain on the family. Naturally everyone was very concerned about it, and that gave rise to perhaps a little bit of short-temper occasionally, but there was no question of the family splitting up over it.

What Helped

I just accepted the situation. It was hard but I accepted it. I thought, "That's it, I've just got to live with it". I sort of tried to look on the bright side. If we thought we were badly off, we knew we could always go somewhere and see someone worse off. Unfortunately in the early days, the family couldn't go on holidays together. My wife and the other two used to go on a short holiday, and then I'd go away for a break on my own. We couldn't take Brendan away with us because of the daily physio and other treatment he was receiving. We really needed to get away for a break occasionally. We could always laugh. We weren't sombre people. When we thought we were less fortunate than other people, I often used to say to my wife that we needed a good laugh and to have a look in the mirror. You need a sense of humour. A really good one.

Would you have done things differently

We listened to people and we thought things through before we moved. We had a wonderful neurosurgeon, a wonderful physio and a doctor looking after him. The professional people told us how we could help with Brendan's progress. Although a lot of time was occupied in carrying out the programmes set for us, we are sure it was most beneficial to him.

Reparenting

He was very close to his mother in particular because she really had to rear him twice. He was seven when he had his accident. When he came home from hospital he was like a baby. He couldn't speak, he couldn't eat, and had to be held like a little baby. There was a great relationship between him and his mother. It took him two years to get over her death.

She used to do voluntary work. This was when he was able to go to school for the disabled. She found that was great therapy. She could see how bad some others were and I think it must have helped her. She was always keen to go there and she used to talk about the people who lived there. They weren't all young people. There were a lot of old people too. She could then see that there were plenty worse off than we were. I think that it's important that people do that.

Life is comparatively short, you know, make the best of it. You've just got a few handicaps but you can still enjoy life - it's important that you do.

Impact on Family Members

I did say earlier that we had two other children, both of whom were older than Brendan. It did concern us that we were not in a position to devote as much time to them as we should have. But the family wasn't strained in any way as a result of it. I think they appreciated the situation we were in. They were very sympathetic towards Brendan too. They've always been very good to him. I've often thought that we did leave them out of things a bit. But it was just unavoidable.

I would say that we had to make a lot of sacrifices, but we didn't let it ruin our lives. Brendan certainly affected us, but at no stage did he run our lives.

The accident had a very great impact on us and completely changed our lives. We couldn't do what we were previously doing socially and we found it very difficult to devote enough time to the other members of the family. It caused quite a bit of strain on me in particular. I had a fairly big job.

The Future

I suppose it's not difficult to envisage the future in six months time or so but I have a slight concern, not only about my son but about others. I think that what worries me about Australia at the moment is the lack of finance for the elderly and the handicapped. If I could say everything was fine, everything is funded and his bills were all being looked after, I wouldn't have any concerns whatsoever. The thing that does concern me is the way money is just tightening too much in my view. That's the only concern I really have.

* * *

LYNN

"I have developed some strategies to cope with the stress, the trauma, the shock and the horror. For myself they worked. When I was feeling particularly angry and frustrated and ready to hit anybody that came near me, my way of coping or handling things was to go home and dig around in my cupboard. I'd find all the old glasses, plates, jars, anything breakable that I didn't want any more, and go outside and smash them one by one".

Lyn is a sole parent caring, at home with the assistance of carers, for her daughter who suffers from brain injury. She has shown much courage in negotiating services for her daughter. She has also made many friends along the way.

Denial

On the 8th May, we had two police officers knock on our door around ten to eight to tell us that Jo had had an accident. My first reaction was denial. But after being convinced, then you're in shock, fear, panic, and absolute terror. We didn't see Jo until 1 o'clock in the morning because they were so busy working on her. Right up until I saw her, I felt absolutely confident that I would be able to walk into the hospital and say "Look, I feel sorry for this child, but it's not mine". However, once I found out that it was my daughter, then the horror and trauma started. You live one minute to the next. You don't plan anything. You just go from one minute to the next. The terror of knowing that my daughter could die, and then the horror of waiting for her to wake up. You live very much on the edge, because you don't really know from one minute to the next what is going to happen.

After intensive care, you come from a ward that gave 24-hour nursing one-on-one to a ward that doesn't give you that, you have terror again. You are absolutely petrified that something could happen to your daughter and no one would know.

There was a constant watch to see if Joanne would wake up, come out of her coma, anything. There was also the burden of the neurosurgeon's only ever telling you the worst possible scenario. It doesn't matter what you observe in your daughter. They tell you it's only your imagination, it's part of the brain injury, or it's a spasm. But you're the one sitting there hour after hour after hour and you notice everything. Then, after nine weeks in hospital, when Joanne still wasn't awake, we had to go to a nursing home.

Even when I went out to inspect a nursing home, I was still in denial because I kept thinking, "Joanne is not going to need this place". She is going to wake up and walk out of hospital. However, she didn't, and we went to the nursing home. I spent the first half hour out on the balcony crying my eyes out, because it was then I knew Joanne needed this place.

I feel you don't cope with this kind of situation. You don't handle it. You just live one minute, and then one hour to the next. It's no good planning anything for the future, because any plans you make could be broken within seconds.

Useful Strategies

The only thing you can do is fall back on yourself. I have always believed that the only person that can help me is me. To stay sane, to get through each day without breaking down is my responsibility. I fall back on my own strength, not try and take strength from something or someone else. Because although I had my family to support me, they couldn't totally hold me up. I had to help myself. You try not to think of the future. You try not to think of the negative side of anything. You have to be positive. You need a lot of positive energy around you. Any time I came across negativity, I backed away from it.

Grief

Grief. There is a lot of grief in a situation like this. From the start you grieve for the fact that your child has had an accident, a serious accident. Then you start to grieve for the child that you had, but you're happy for the child you've got. Because Joanne didn't die at the scene of the accident, our grief carries over. If she had died, our grief would have a definite beginning and ending. But we grieve constantly for the Joanne we had before. We grieve for her because she had such a wonderful normal life and now she hasn't.

Fear

It felt strange when Joanne first moved to a nursing home. It was a completely different environment and you always fear the unknown, so we were afraid of the place. Afraid of someone who's in Joanne's position, afraid of Joanne waking up and not knowing anybody. Just generally afraid. Once we had been introduced to the staff though and saw the way they handled Jo, some of that terror went.

* * *

LLOYD

"Financially it's certainly been a shock to the system. I went from a really good job that I liked, a good paying job, down to practically nothing per week. Put it this way, where I was taking home 500 or 600 dollars a week, I'm now picking up and taking home about 130. So it changes your lifestyle and way of living from that point of view. You learn to live with it. Tightening your belt and being more careful with your money. Yeah, I budget pretty well, but I'm not a money worrier".

Lloyd's son Michael was injured in an accident and Lloyd gave up work to care for his son at home. He is a widower who found that decision has completely changed his lifestyle, more than he thought it would. His sister-in-law Jenni (whose story appears at the end of this book) helped him in this chosen task.

Initial Feelings

I felt shock. That's about it. It was just a major surprise.

How do I put it? It wasn't panicking or anything. It's just one of those things that happen. You go along with it, you know. I could see it with my own eyes, so therefore I believed it. I didn't say, "Oh, this is not happening", or anything like that because you could see that it was happening. You just look around and say, "Hey, where do we go from here?" and sit down and think about it for a while. The hardest part is that most of the situation is out of your hands. I'd say 99% of it is in the doctors and specialists' hands. They'd seen Michael and seen his position and they said he probably wouldn't make it through the night.

Well, he's still recovering. I believed that he would always make it. I'd seen nothing earlier in the piece other than some ups and downs where you thought he may not make it, but he proved everybody wrong. There's been nothing but slow progress ever since, and that's about all you could really ask for.

I had to give up work. You can't go out and about like you used to, it just changes your whole lifestyle completely. I wouldn't say for the better. My quality of life has gone down but only from the point of view of entertainment. Apart from that, my quality of life is the same it has always been.

Father-Son Communication

It's the same as what it was before. We got on well together. We've always been mates and always will be. It's made no difference whatsoever. I've learned to interpret him. Communication can be a barrier at times because it takes a lot of concentration with Michael to understand him. If you're driving along in the car and he wants to say something, you can't concentrate on both. We've got a Canon communicator, which we use in the car, so he gets by with that. It's difficult at times but you know, you live with it.

Michael wasn't living at home before the accident, so I had to change my lifestyle pretty much to adapt to him coming back. You just have to adapt to whatever the situation is. You have to be flexible; you wouldn't get by if you weren't.

I've never had any difficulty with changes in my life because of the fact that that's what life's about. Life is full of changes, you know? So if there are changes that need to be met, you meet them as they are, and deal with them.

I had no difficulty in finding the right approach to take with Michael. We just dealt with every situation as it arrived. You do the best you can. You might find a few difficulties along the way from the Government run organisations that are there supposedly to help you, but not enough to worry about. Mainly we have to rely on our own resources.

It's difficult for Michael or me to get out and about anywhere because of the problems that he's got. But that's part of the thing. I can't see that it's an issue. We come to arrangements and we very rarely argue over anything. He's much more like me and everything in life is easy come, easy go. You don't have enough time in life to argue too much about anything. You just get on and do it, you know. As you say, if he wants to go left and he can prove to me that he's got good reason to do that, well, we'll do that. We get on well together, mainly because of the fact that we can talk to each other. It doesn't matter what it is, we can talk about that problem, and most times we can solve it.

The Past and the Future

No. I'd do the same again. I have no regrets.

I don't really look down the track, six or twelve months, as I said before I just take it from day to day. Because God knows, nobody knows what's going to be happening in six to twelve months, none of us might be here, so I think you just worry about the day in hand and cope with that day as it is and not worry about too much else.

* * *

LOIS

"When they put irons on Stephen's legs, I found that very difficult to cope with. That only lasted for a while though, then they didn't do it any more. I used to think that was very cruel, and the plasters on his legs and hips, you know. It's all coming back to me now whereas I hadn't thought about it for years".

Lois was an extremely gentle, loving mother of Stephen who was afflicted with cerebral palsy as a child. Stephen died two years ago of cancer. Lois was at his side before he died, sometimes spending nights with him. He is remembered with fondness by all those who knew him.

There has been a lot of heartache in our lives. It hasn't all been a bed of roses. I can look back now though and see all the good things. My husband and I and the three boys would have a wrestle every night on the floor. I mean Stephen was right in there, with us all. They'd probably be on top of somebody and he'd be wrestling too.

I think once you accept the situation, it makes it a lot easier to deal with. If you don't accept it, you can't deal with the problem. That's how I feel anyway.

I was always very proud of Stephen when he did little things, because it seemed such a lot to him. I mean, there were heartaches amongst it because he couldn't do all the things, but I was always very proud of him and the little things he did. So every little thing was such a big thing for him so we all used to praise him that he did. It made him feel really good.

It may seem strange to people, but we've never had any big hassles with Stephen's disabilities. The family always accepted Stephen for what he was and we just seemed to cope. I don't know whether that's normal or not, but we always seemed to cope with it. We tried to the best of our ability to treat Stephen as a normal person and whatever the other kids were doing, we'd try to put him in with it. That's just how he grew up. Even to the stage where everyone was in the backyard playing cricket and Stephen was the umpire. He always did his bit and he was always included. He'd have his hit with someone helping him with the ball. I think my husband was heart-broken about it and I sometimes feel now that he didn't cope as well as I did. He didn't show it, but then again, men don't show their true feelings I don't think. But we did alright I feel, with Steve.

We've tried to accept the situation and we've always tried to put ourselves in the situation - what is best for him, not what is best for you. You stop thinking about what you want all the time. I mean you don't have to be a martyr or anything. Be very loving to them. Love is very important, let them know that you love them. I always used to tell Stephen that I loved him.

Telling People

Stephen is a part of us. We've always automatically talked about Stephen. I mean I don't feel ashamed of what Stephen was, it was just something that happened. So he was always mentioned.

The other boys loved Stephen deeply. I don't think there was any jealousy or anything there. Because we all worked together with Stephen and they'd do anything for him. I think perhaps Stephen's nature helped in this respect too. Because he wasn't very demanding of me, I was able to work with all three boys. I could talk to Stephen more than I could the other boys. But then again, I probably could with the other boys but I just haven't. I just chose Stephen to do this with. But on the whole, the other boys all coped very well. I honestly do not know why people have problems with this. You see I don't understand it because we never had it. Even when it came to relatives and things, they'd all flock to Stephen's chair. He was very well loved. Whether or not it was because we just thought of him as being normal, and the others just took it for granted that he was too. The little ones, they were gentle with Stephen, which was very surprising to us.

Past Reflections

I sometimes blame myself for Stephen being the way he was. Stephen had a little fall at 12/13 months old. He fell off a veranda and onto the path and I sometimes wonder if that was the cause of it. The other thing that irritated me at the time, was at the hospital where Stephen was. The doctor that was there before had taken the lumbar puncture with him, and a lot of people said that if that had remained there, it might have helped Stephen. So thinking back, perhaps we should have done things differently.

Powerlessness

You feel powerlessness when you look back, but at the time you don't realise it. I think that at that time, this doctor had taken the lumbar puncture with him, he'd left and then another doctor came. Then of course, there was nothing there. But I still don't understand why Stephen wasn't sent down to Adelaide before, you know. But I don't know the full circumstances. I mean there may have been a reason for that. He had meningitis at 13 months and that's when he came off the veranda. So he had that and they sent him to town. He seemed to come good, for a few months. Then he had a relapse and that's when he was diagnosed with cerebral palsy. I've got photos of him crawling and sitting up, just a normal, happy little boy. Yes, it was very sad. As I say, once I accepted it, it was just a normal part of my life. I suppose it's hard for people to understand. But I suppose I had had it for so long that it was just a normal part of my life.

Grief

I think from day to day at the moment. I miss him but I'm not going to brood on it, because I felt all along that Stephen's better off, the way he was towards the end, yes. There are the moments that you have. I don't know why but they seem to come. Not often but sometimes I do cry; I get a heavy feeling inside. I'm not a 'cryey' person but I sometimes have a little bit of a cry. I just feel heavy inside a lot, but no doubt that will pass. The heaviness is there all the time. I think it's more now that Stephen's gone, but then again I don't know. You know, everything happening so quickly. And when Stephen was actually there and he was really ill, I had the sadness. But he was there, so you didn't have the same type of feeling as you have after they're gone. I find I don't like to talk about Stephen a lot to people because I think they think that I'm brooding on it, or talking about him too much. If I think I'm doing it too much I'll pull myself up and think, "I'm talking about Stephen too much". I don't want to talk about it all the time because I don't want to bore people with it. That's how I feel. I don't know that they want to hear about it all the time so, I don't say a lot.

* * *

MAUREEN

"Sometimes you get down and go into your room and have a good old cry and then come out laughing and think "what did I do that for?" but it relaxes you and takes the stress out of life if you can just let go with the tears - it helps a lot. I found that making jokes and joking with Paul about different things helped him".

Maureen is a committee member of THISSA, a self-help group for people with head injuries. She is an experienced carer who unfortunately is suffering from ill health. She is still willing to give advice on the telephone to new carers who have head injured relatives.

Impact on Family Life

When Paul first had his accident, I was cross. But then there were things to do. I had a home to pack up and children to look after. I had to come down to Adelaide with Paul and that was hard for the children, to uproot them from their schools and things.

Paul was put into intensive care and was there for a matter of months. He was still in a coma 12 months after his accident. It took a toll on the other children - they couldn't come to terms with it. I had a lot of problems with them as well as worrying about what was going on in his life. He was put out for rehabilitation. He started getting physio and we started taking him to swimming and different things.

The children used to come and see him and take part in some of the things he did. After their school they used to come to visit and race around his chair and play his music with him. He couldn't talk at this stage. It was eighteen months before he spoke, and even then his speech was limited.

Slowly he progressed, which was really slow, and then after two years he developed anger and frustration. No one really knew how to deal with it, which was very hard. We had to flow with the punches, and his outbursts. Then, when he went to Regency Park, they helped him a lot there to control himself. He spent a lot of time in mental hospitals, and with psychiatrists, and being put on medication to help him.

When he came home to live, it was very hard for all of us because he had a lot of outbursts. We had to put up with furniture being broken. I used to run him outside and tip him out of his wheelchair until he calmed down. Sometimes unconventional methods were used to cope with behavioural problems.

It was difficult with the other children because they thought I didn't love them and I only had love for Paul that was not true. I know I spent more time with Paul than I should have. I should have spent a lot more time with them. If I could turn back the clock, I probably would do it differently. You live and learn, and you learn by your mistakes. I've had to learn the hard way on a lot of things.

Self Help Group

I've been on the Committee of THISSA for 15 years now which is a self-help group for people with head injuries.

We run the club on Mondays, Wednesdays and Fridays for guys and young ladies with severe head injuries who have nowhere to go. They can come and join in and do activities. We cook them a meal on Fridays for which we charge them $3.00 and they get a very good cooked meal. They have lots of fun and they can interact with people of their own disabilities and they seem to get on. We have a lot of camaraderie and jokes and they laugh and we are like mothers to them all. When something happens to one, we all feel it. We have lost a few of them through death, which is very sad and it takes a while to get over. But as you know, life goes on and you have to put that behind you. The guys love it there. We used to have a couple of young ladies but they have been sick. We haven't seen them this year. We have a new guy starting this week. He was a victim of a bashing. He had been bashed and left to die. But he lived and he has a few problems with his temper and controlling it. We are used to that.

Overall they have a very good time there and we have a meeting once every two months in which we thrash out different ideas. We looked into housing and other things for these people with head injuries. We tried to make life a bit better for them. We approached the Government on a lot of issues.

What Helped

When Paul was living at home I had a doctor come in once a week to see to his health and that he was alright. The rest of us were holding up under the strain, and to do that you have to have a good sense of humour - all the time. Sometimes you get down and you go into your room and have a good cry and then come out laughing and think, "What did I do that for?" But it relaxes you and takes the stress out of life if you can just let go with the tears - it helps a lot. I found that making jokes and joking with Paul about different things helped. He has lost a part of his ear and he used to say "How did I lose that - who's got my ear?" and I used to say "Well, the dingo up in Alice Springs took your ear and ate it for dinner". He used to look at me and think "That woman is mad", and we used to have a good laugh, and he'd forget about it. Then when he had his trachie in his neck he wanted to know what the hole was. I told him they had cut his throat because he was a bit of a pain in the bottom, and he used to laugh. He used to "Oh! Hoh!"

I know when you look at your people and they are in that condition you think, "How the hell am I going to cope"? But you do cope, you've got to have a sense of humour and be realistic about things. What you have to do is get on with your life and make things as easy as you can, not only for you but for the rest of your family. Because if you don't you lose them. I lost my children. They left home because they couldn't cope with their brother or me giving him all my time, but I have now learnt from my mistakes. I know it was wrong to give Paul all the time I gave him and not to them, but my way of thinking was: they were able and he wasn't. But they needed me as much as he needed me. When you're an only parent you are torn between your children and the one that's had the accident. It's very hard. Things are looking a lot better now.

The children are a lot happier. They've got families of their own now and they've got on with their lives. I not only helped him, helped other people's sons on the ward. I helped one feed and learn to talk. I was a person who got involved not only with my son but with all the clients on the ward because they were his friends. We went swimming every day with them and helped them try to make a better life in the Rehabilitation Hampstead Centre.

We have done a lot of lobbying with Governments to get things going for them. To get a bus to take them out, back into the community so that they weren't frightened of everyday things, which they can be. When they first come out of a coma they wonder what's going on with them, what's going on around them. They think they are in a mental hospital. With Paul, we had to tell him that he wasn't. Just because they would put him with old people, with senile people. We lobbied that they would be put on a ward all together. All the young people with head injuries brought together on one ward. It took a while but we finally got through to them. Mostly the parents got a lot out of it because we could talk to one another and help one another.

A lot of people go into themselves and don't want to talk about it, but I find that if you can talk about it to people and cry, tears are not to be ashamed of. Not feel down and out all of the time, and I know this is hard. And it's hard when you have a young man who has been sexually active and then it's cut off, and then he wants sex with his mother. You think, "What the hell have I struck here - how am I going to deal with this?" I used to say to him, "Don't be daft, I'm your mother, and don't talk to me like that" and he'd say, "I'm sorry Mum". An hour later it's back on again, and then when I had care workers in the house looking after him, I got accused of being on with them. Things got very shaky from time to time. They were all old enough to be my sons, and when I did have a friend, he asked him if he was having sex with me. So I never saw him again because he was too embarrassed to come back. After that I never bothered. I just went out and worked. I had my old job back at the hotel. I used to work up there at night and I sort of got back into the way of living again, and meeting my friends and things. So you can feel down, you can feel it's not worth going on with. But you have to go on, not only for yourself but for the rest of your family, and not be a defeatist - which I'm not!

Advocacy

I hit things head on, I've probably got the biggest mouth in the business when it comes to the Health Department and things for the head injured people, because I don't think there is enough things going on for them, especially the slow stream. The fast stream is a lot luckier. The slow stream that can't get out and do things, that have to have 24 hour care, have to be fed and washed, it's very hard for them and I think they need a lot of hands on care and love and cuddles.

Sexuality

People say you can't cuddle them (people with brain injuries), there's the sexual thing. Well, that's a load of rot. You've got to know how to handle people when they do try this on. We have lads that try it on with us and you just tell them quite nicely that it's not appropriate. I give them a cuddle and a kiss on the cheek when they come on Fridays to our club. That makes them feel like they are at home and that they are wanted. They have got to feel this. You've got to love them and cuddle them, and you can always handle the sexual bit. If you can't, you have to get help from people who know how to deal with these things. But I've learnt all of this myself. I've been put in some embarrassing situations with my son. I've told him it's not on. If he masturbates, he's got to close his bedroom door and I give him a towel and I just walk away. When he calls out, I go back and I peep to see if it's all clear and if it is I go in. If it's not, I tell him off. I tell him that I'm his mother and I don't have to put up with this sort of business. You have to laugh it off, but deep inside you are crying because you think - you know - a healthy lad and look at him. But you have to get over that. You have to try and help him, and this is what life is about and this is what I've tried to do with him.

I don't know much more that I can say. When your own people are first in a hospital, I know it's a shock and you think, "How the hell am I going to get through this?" But I think that if you have a good sense of humour and a good outlook on life you will get through, and if you need help don't be frightened to ask for it.

* * *

MARIE

"While she's got determination and everything, she keeps me strong - she's the strong one. I'd rather be bubbly for Tracy, and it keeps me going, but if I'd come in here feeling sorry for myself because I come up here and see so many people who don't have any support from anyone, and that's sad to see. Their families just leave them and not even bother about them or anything like that".

Marie finds the job of part time caring for her daughter with "locked in syndrome" both rewarding and stressful. She felt that as a sole parent, she has no choice. She has become a stronger person in the process of having to come to a nursing home almost daily, to feed and communicate with her daughter. It would be financially easier for her if carer payments were made more flexible to provide for people in similar situations.

Diagnosis

She was treated for migraine headaches and stress and went into hospital and went into a coma, abscess brain stem damage. Total shock - that something could happen overnight.

Your whole life changes. Everything's changed. My young one, well, she missed out on a lot because I was in hospital everyday of the week and not leaving until 8 o'clock. She was only thirteen when that happened and she had to grow up very fast. I'm stressed out all the time. You put up a good front when you go in to visit. But when you go home you relax and start to think about everything. I stress out more at home than here.

Telling People

At times I sort of just tell people I don't want to talk about it, and other times I like to talk about it just to get things off my chest. If I'm stressing out I'd prefer to forget about it, and talk about other things. All I virtually do is come to the hospital and come home, go to the hospital, go home, and I have nothing else to talk about. So I would prefer to talk about other things that are not related to Tracy.

What Helped

She gets very demanding at times and tells us what she thinks are not very good. I had four days off last week and she said, "I'll see you next year" when I left, because I left early. So I said "Yeah all right then". She gets very emotional if I am not with her. I am her support because I am the only one who is there for her. I come nearly every day. Her father's over here and he might come in every month, or two months, so it's just virtually me. When we take her home, Natalie is there to help me on the Sunday. We have always had a good relationship, Tracy and I. She can't talk or move or anything like that. She gets angry, when you have got to change her and things like that. She says she's very embarrassed which I understand because she can't do anything for herself. You feel that you sort of have to make a joke about it.

It is very frustrating; families with kids that have car accidents and things like that. They've got a way of voicing their anger because they know what caused it. Whereas we don't really know what caused it, what happened. I live in fear of my younger daughter getting the same virus. She's sixteen, so she got another three years. In that sense it is scary. I say "Now don't you fall sick on me too, Natalie, because I won't be here, I'll be in the grave". I don't think I could cope with another one. There are times I just can't cope and times where I've stayed away because I woke up that morning and all I could do was cry. When I come in here, I have to be all chirpy so if I feel that I am about to burst into tears, I won't come in that day. I would just say that I'm sick. She does dictate to me in a certain way, but I let her do it, because it's the only thing she's got. But I do pull her into line every so often, I let her go so far, then I say "That's enough".

* * *

KEITH

"The changes in our lives have been traumatic on a continuing basis because we didn't know how to handle it. Our daughter didn't have any memory of what she'd said 24 hours ago, or any time ago. Therefore whatever was said was forgotten about and a different tack taken 24 hours later or 8 hours later or 2 minutes later, so. All we could do was get her to record in writing what was actually happening. But then the recording got so long that she didn't know what page to look to find out what she'd done".

Keith and his wife were both working full time when their daughter became ill. Her diagnosis was unclear in the beginning, leading to their daughter not getting the right treatment she needed till much later. As a result of this, the parents went through a stressful period in the process of advocating services for their daughter who was unable to communicate at the time. Recently Keith's wife retired from work and their daughter is much improved.

Coping Day to Day

I haven't developed any strategies at all really, except that I find that it pays to give the person enough space so that you are not living in their pocket. If they want to contact you they can, and if you want to contact them you can. But we only go to their place when invited or requested to do so.

We had difficulties in finding the right approach initially because we didn't adjust enough one way or the other. It didn't come naturally. I guess we just had to fly by the seat of our pants so to speak and do what we thought was best. Some of the ideas were OK and some were not. But we just kept on modifying. Eventually we found that we had to give her more space for herself, so that she didn't feel that she wasn't independent.

Regrets

If I could turn the clock back, I would have realised that with the experience I have now, I would not have permitted my daughter to go home from the hospital. It was self evident that she was very ill. No amount of doctors' opinions would have swayed me to anything else. At that time though, I thought that the doctors knew more than I knew. Obviously I should accept their opinions. But I think that politics have intervened in lieu of medicine to the degree where maybe doctors are required to do things that they wouldn't normally do.

We didn't know about a patient adviser and we had to find out about that through a lawyer. Then we found out that we had rights.

* * *

PAM

"Right at the moment we're on a high because we've seen some really good progress. We feel elated. It has taken a long time, but I can recall many times in the past where we have been in the pits of despair thinking nothing is going to change, nothing is going to happen, and that there's not going to be any progress. I guess this is what has happened with most people who don't make a quick recovery from head injury".

Pam, a music teacher, has been caring for Airlie for five years. Her husband Les was very supportive and accompanied her on her daily visits. Recently, Airlie has left Julia Farr to go home to their care.

Impact on Family Lifestyle

This didn't become apparent for a while but it certainly changed our lifestyle while we were in the early stages of recovery. We spent all day at the hospital and just went home to grab some sleep. We even ate at the hospital. We got talking to people to help us and we organised a roster of people to help see us through those couple of months when we needed to have someone with our daughter all the time. This was not easy, but people were helpful. So in the early days, we just dropped everything. Then when it became apparent that her recovery was not going to be quick, we moved to a nursing home. We again had to change our lifestyle.

I still had a job but my husband was retired. I tried to keep on with my job, but it didn't work. Our daily routine became "One day at a time". We worked that daily routine around my part-time job. All of our other commitments got put on hold and things like housework, family affairs, recreational interests, were all neglected. We continued to take one day at a time. Eventually we got into a routine whereby we made a visit once a day for a certain number of hours to help with the rehabilitation process. But the long and short of all of this is that we did have to change our lifestyle. I had to give up my job. I couldn't cope with the daily routine and rushing off to a job as well. Ever since that first year I think we've had the same daily routine, which has been, take one day at a time. Don't worry about doing anything else that is not important, just concentrate on your daughter.

Impact on Sister

She was teaching up in the country at the time and it had a big impact on her because she felt isolated from the family unit. She had to make special trips down from school and returned on weekends. She didn't actually see her sister very often. In some ways that was probably good because she could see improvement - when you are away you notice things happening more. On the other hand, it was a very worrying time for her to be so far away, as she had to make a big effort to come down. She used to come to Adelaide every fortnight, and it's a long drive.

Emotions While Watching Recovery

We had all sorts of emotions I guess. Very mixed ones. At times it was despair, and at other times it was elation. Sometimes it was sadness and sometimes it was joy. I guess you could take a lot of adjectives like that and describe how we felt watching her. Right at the moment we're on a high because we've seen some really good progress. We feel elated. It has taken a long time, but I can recall many times in the past where we have been in the pits of despair thinking nothing is going to change, nothing is going to happen, and that there's not going to by any progress. I guess this is what has happened with most people who don't make a quick recovery from head injury.

Strategies

My nature is fairly quiet actually, and I've had to develop strong advocacy characteristics. I have had to develop strategies of assertiveness because that is the only way I have been able to make things happen. It makes me feel stressed afterwards, and I'll probably come down with a headache two days later. I'll be alright at the time but I suffer for it later.

I've tried to be helpful. I think that is a very good strategy, trying to be positive and trying to work as a team member with other people, particularly staff, so that we can work together to achieve goals. Another strategy that I hope has helped has been to make myself available to do things such as go on committees, attend meetings. It might seem a bit remote, but I think it may have some far-reaching benefit for my daughter.

To deal with her actual disability, again it's just a matter of coping with each day as it comes. I think we have kept in very good health so we are fortunate that we can keep up the pace and not succumb ourselves.

I guess all of our life experience has helped us. Our faith in God has provided our needs and we just believe in coping with one day at a time. Although we felt weak many times, it has given us strength. Other training that I've had as part of my job as a teacher has given me a lot of experience. I've had to be the assertive teacher sometimes, which I don't like doing, but I've had to do, and that has helped me cope. Other training in life experience, some of which I know that I gained through being a girl guide, has helped me: leadership, lateral thinking, all of those things have helped me to cope and stay strong because if I don't stay strong then I'm not helping my daughter.

Denial

Many of the textbooks say that people go through a period of denial. I guess that period for us was a very short time, and it would have, as far as I can recollect, occurred only when we were overseas and the plane was coming home. Because we hadn't really seen the reality of the situation and we thought "Yes, she's injured, she's in the hospital, but OK, she'll get better - she'll recover". We denied it. We thought, yes, she's had an accident, but we denied the severity of it I guess. We had been told that she wouldn't survive. But we thought, "No, our daughter is not going to die. She will live, give her time to recover". However, when we got to the hospital and we saw the reality of it, denial immediately stopped because we saw the real situation, and we were extremely worried. We realised that it was true. She might not survive, so we couldn't deny it any more. I don't think we had any more periods of denial after that because from then our main focus was to go forward. We were being positive and thinking, "We're going forward, we've got to wish this on her. We've got to do everything we can to help her get a little better every day".

Telling Other People

Telling people about our daughter and her accident is still an issue for us. We are getting better at it. It still brings tears to our eyes at times. It just depends on the situation and whom we are talking to. If I'm talking to friends or people who are sympathetic and understand the situation, I can cope with it. But when I talk to a stranger who doesn't know anything, it still brings up a lot of emotions. At the moment we are concentrating on telling people about all of the good things. We are not dwelling on all the things she can't do. But on all of the things she is doing and doing well, and that helps to keep us going and to cope in situations like that.

The Future

One can't look into a crystal ball but hopefully she will be living at home. She'll be more independent. She will have all of her needs met all of the time, and that she will be able to tell me what those needs are. If there's any conflict we will be able to at least have a sensible discussion on what would be the best thing to do.

I hope too, that within the next 12 months, now that she's communicating and writing so well, that we'll be able to find her something productive and purposeful for her to do in life. She might like to write some articles for a magazine, or write a book.

* * *

RUSSELL

"Yes, I am still grieving. It's the unresolved sort of relation of it. Had he been killed, it would have been different. This just seems to go on and on. The grief is ongoing. It's the recurring nature of it. You can go a week or so and think, "Well he's progressed and he's not too bad". But then some mental thing will happen. He'll try to pick something up and bump into a door. His life is completely changed, for he's confined to a chair of course. It's just ongoing, unresolved, recurring grief I suppose".

It is quite common to witness re-parenting in cases of acquired brain injury. Russell and his wife were another retired couple who had to take up responsibilities of looking after their son Warwick as aged parents. Russell himself had a stroke and the emotional side of the caring experience had more impact on him than his wife. Shortly after the interview, he passed away. His wife Joyce, has kindly consented to the publication of this manuscript.

Response

I think it's just coming to terms with what is, which was the turning point for me. Just accepting it and not trying to change it any more. Certainly, we've had to put a lot of things on hold and change our daily routine. I've tried to get on with my own interests as much as possible. I keep up outside activity, which had tended to lapse quite badly. But I'm gradually picking up the threads of all of that, and getting back to some normality.

I think the biggest learning point for me was just to accept what is, and that wasn't easy. I'm a good way down that road now though. I think it was just a matter of time, and not thinking about yourself so much as others. Hopefully we'll all be a little less selfish.

I guess we've been lucky in some ways with Warwick, in the fact that his mental faculties haven't been severely impaired. But other than that, it's just a matter of time to come to accept what is.

Independence

Warwick is an individual, and with time, he was the one who had to decide. It was down to him to do what he wanted, rather than doing what we wanted. We only wanted the best but it was up to him to decide what that was.

Once Warwick went into the house on his own, I think that was important to him and his privacy. With the carers, his attitude has changed so dramatically, for the better. It was extraordinary. I think it was possibly the result of leaving a nursing home because he had a feeling that, particularly with people who were severely brain damaged, in the sense of intellectually. I think he had a fear and resentment of being with those people. But certainly his attitude is just so much different, so much better that it's remarkable.

Past Reflections on Changes in Family Lifestyle

Unbelievably really, it's just turned it upside down; it's just changed completely. After the first six weeks or so at the hospital, it was, how would you say, very demanding, emotionally and otherwise. And then his eighteen months in a nursing home. We visited virtually every day and we were just being confronted all the time with the reality (crying). We have another son and a daughter who live in Melbourne, so it was just really being confronted with his condition virtually every day. Then gradually our acceptance that he wasn't going to get much better, physically anyway - that was disappointing. He achieved his goals set for him with his therapist. He mainly met the goals. Then it seemed as though there was no more room for improvement. And then it was just a case of wondering what was going to happen.

Emotional Impact

My wife Joyce, has certainly handled it much better than I have. She is closer to Warwick. But I did have small strokes not long ago which have left me, emotionally vulnerable. It's affected all parts of our lives and planning for the future and things like that. It is a pretty encompassing thing that's happened, and quite a dramatic change in lifestyle. We feel we are obliged to consider Warwick in terms of our retirement plans. Perhaps we needn't bother. I don't know. But we do.

Just time helps the healing, just the recognition of what he is and accepting what he is. I tend to come from a place called "Shouldn't Be", so that if a situation is wrong, in the past I've always tended to want to do something to fix it or correct it. But I think this has helped me to accept that this is what is and I can't change it (his own stroke). Small reminders all the time have reinforced that sense of loss.

I think we are much closer now than we were. Warwick is fiercely independent and always has been. Of course that is good in the current situation, but we're certainly much closer than we were. Yeah, it's not all bad.

* * *

NEVILLE'S FAMILY

"I would say that his dependence is one of the biggest worries we have at the moment, on account of our age. I'm 75 and my wife is 71, and the law of averages says we aren't going to be around for many years, are we? I feel that if anything happens to us, well, we can't rely on our daughter to be responsible for Neville for the rest of his life, so therefore I am the carer at the present time, and when I go, well we haven't really got anyone picked out yet to do the job. With all the financial worries with Neville and the caring of his properties and so forth, so that's a big issue we haven't come to terms with yet. We really want to have someone who can take over in a minute's notice".

Neville was assaulted in the street. The severity of his injury was not recognised until he collapsed at home weeks later. It took a long time to fly him to a hospital in Adelaide. This story demonstrates the inaccessibility of services for people with brain injuries in rural South Australia on account of distance, and the dilemma faced by aged parent carers with serious health problems of their own.

Reaction to Accident

Mother: I think it was such a shock and a numb empty feeling. It was such a shock to us because we knew nothing about it until he was about to be air-lifted to Adelaide.

Sister: I really feel the same way as Mum. It was a very empty feeling - sort of not knowing the day it happened that Neville was so terribly ill. We knew he was unconscious but we didn't know what to expect. We were just expecting him to wake up and say, "Hello, how are you?" That wasn't the case at all. We didn't know it was as bad as it was.

Father: We didn't know anything about Neville's accident until the ambulance was taking him out. I went out there and saw the ambulance men and he was moaning and groaning. I knew that he was very sick, there were pillows and that on the floor where he'd been crawling around and camping on the floor for quite a few hours, maybe even a day. We didn't know what the result was going to be until he had his operation. When they rushed him away, it was going to be by air ambulance, but we couldn't get him one because the plane couldn't land as it was about 2:30 in the morning. It was about 11:30 at night when they found him and at 2:30 in the morning, we were outside watching this plane circling around. I said to Val, "I don't think it's going to land here", and it didn't either. By the time they'd notified Trevor to go out and turn the lights on, the plane had already been out there and gone because it was only eighteen miles out and it had only taken them a few minutes to get out there. They had to go elsewhere to land, come back by road to pick Neville up, take him back by road to the airport, and then fly him to Adelaide. They got him down there about 8:30 or 9:00 am on the Friday.

Mother: They warned us that they didn't think he'd be alive.

Father: They said that it was, you know, very ticklish.

Mother: Before they even left they gave us their sympathy.

Father: When they got him down here they gave him a scan straight away to find out what the trouble was. As soon as they found out, they operated. The neurosurgeon said to us that they didn't expect him to get down here and then they thought it was a miracle that he got through the operation.

Father: There was a lot of time wasted with the ambulance. Well, but for the fog, he would have been down here several hours earlier. It's 80 miles from the airport to where Neville was - so that's 160 miles that the ambulance had to travel.

Past Reflections

Mother: I don't know if I should be saying this, but Neville went to the doctor after he got the knock, as he was having severe headaches. The doctor didn't send him on from up there. It was a fortnight before the actual injury bleed. I feel as though if he were sent on straight away when he first went to the doctor, he wouldn't be like this today.

I can't see that we would have done anything differently. In a sense we are lucky we've been retired and able to be down here all the time. I mean if Clarrie were still working well then it would have been very different. We would have had to do things differently. But as it turns out I don't think we'd do anything different. We'd still want to be down here with him. Through being retired, we are able to do it.

Recovery

Mother: It was very slow progress. Neville was still unconscious when he came out here, and I had no idea of brain injury whatsoever, and he hadn't spoken and I thought he would just wake up and say "Hello Mum" or whatever. You know, I had no idea, but of course, after a few weeks, you hear what a brain injury really is. I just thought it was a slow recovery when he woke up. But, you see, he didn't wake up. Well, even now he sleeps a lot. That was the biggest shock. Gradually, I think you learn to accept it, but it does take a long time, especially when you don't know what to expect. In the hospital he was just so bad, he had nothing - no feeling and no movement down his right side.

Father: That's the side that's giving him trouble now to a certain degree. We went to the doctor today and she said his left eye is getting back to normal, and his right eye will still have trouble – that could be ongoing, they don't know for how long. This was all brought about by the brain lacking tears to the eyes, caused through the operation that he had. It's been sending down this mucus and this has been affecting his eyes. He feels as though he has sand in his eyes, and it is very painful. That's why Neville for this past eight or nine weeks has been disinterested in doing anything at all. He's even been eating with his eyes closed, walking with his eyes closed. During many of his activities, he hasn't opened his eyes whatsoever. I'm pleased to say that this last fortnight to three weeks he has picked up dramatically to what he was. He's not back to the stage when he first contracted this complaint. After all this time, they can't seem to tell you why, and it's a very rare thing, that he has this mucus coming down.

Mother: In the 18 months he had been making reasonable progress. Towards the end, well towards March, was when the eye trouble set in, but we were quite pleased with the progress he'd made, except for talking. But then this eye thing. I think that has been the biggest disappointment. We've put in a lot of time with him, and so have the staff.

Father: He has also deteriorated with his walking, his physio, eating, etc.

Mother: Even now we are still trying to get him back to feeding himself. He will, but you see I think he's been a little bit spoilt now, because in that three months when he couldn't see, like a child... you know. We're trying to get him back to making him do it himself.

Stress

Mother: Well, I think at times you get edgy with each other because of it. I think there is a certain amount of strain, and I think at times you are inclined to take it out on each other a bit, when things get to you when you have a rough day.

Father: Yes, I think that one or two times I have got a bit obstreperous with Neville, with the fact that I can't cope with it, you know. I realise now that I'm doing the wrong thing by doing that, because with the injury he has he can't help these things, and of course, I get like that it makes it bad for me and my family because they get uptight, and that's understandable too. But I'm coping a little bit better now than I was. It is very hard at times when they won't do the things that you want them to do, such as getting out of the car and different things like that. It is very, very frustrating.

Mother: I think one of the things that I've learnt is that if you really lose your temper or anything then that's just really the wrong thing to do. You've got to try and keep calm. If you get agitated, well then so does he, it's as simple as that. Agitation doesn't help.

Sister: I second what Mum says. Like, if we're upset, then Neville gets upset, It's not very easy though.

Strategies

Father: I could say that we're just waiting for Neville, more or less, to see how he is going to come ahead now after his eye trouble. In the next few weeks, we've booked to have an Options interview. As yet we haven't done anything about that for Neville, but at least we are going to talk about it and see what options we can get and see what they can come up with. But as far as taking him from the nursing home, I think at the present time it's wise to keep him here. We'd never be able to handle him at home the way he is. There's nothing much up there that we can benefit from by going back. We'll just have to wait and see what Options have got for us.

Impact on Sister

Sister: Well, I'm going down to Adelaide quite often to help Mum and Dad out. They really appreciate it, but it's fairly hard leaving Trevor (husband) on his own up there. But his family is really good and helps him out a lot. He's glad for me to come down and do what I do. If his brother were in the same situation, he'd do the same.

Loss of Friends

Father: The thing I notice most with all of this is the fact that in the first few months he had quite a few visitors because he has a lot of work friends who used to come to visit him. But I notice that has dropped off quite a bit in the last few months. I think mainly because they can see that Neville hasn't improved that much and he can't talk. So I think they realise that there's not much point in coming to see him, except there are one or two who come when they can. But they are still good friends, and I think Neville is very fortunate that he's got those friends that do bob in.

* * *

DENISE

"I think to talk to them as much as you can, and work with them, and hope. I always live with hope. I am never one to give in, and I don't believe in giving in. And I think the child needs support... I feel for people who can't cope. It must be really, really hard. Yeah, you cry about it, I think it's good to get that out of your system".

Denise's son, Craig, was an accident victim and Denise has demonstrated how getting involved in her son's therapy has improved his outcomes in rehabilitation. She has encouraged her son's progress by boosting his morale in the physiotherapy room and by standing by him through thick and thin in his relationships. She sometimes spent thirteen hours at Craig's side daily. It paid off in the end when he made great progress. Her advice to other carers is - don't be afraid of complaining!

Initial Reaction

In the beginning, when he first came here (a nursing home), I couldn't even watch the therapist try to sit him up. I had to walk out of the room, crying. I just couldn't handle it for the first couple of weeks. After that you could see the progress, and as time went on, I really got into it. The therapist was teaching me what to do as well. I was spending thirteen hours a day with him, doing what I could and it's great what he's doing I'm rapt. My husband took time off work and was here to give me support and vice versa really, and then there was our daughter. We thought at one stage we were spending too much time with Craig and forgetting about her. But she said, "No, you go with Craig". She had a fiancee. She's a lot older than her years and very mature.

Telling People

I'm happy to talk about it and not hide anything. It doesn't bother us and it doesn't bother Craig either. Well, it's happened and you get on with life.

Telling people has not made much difference. We've always been very, very close; the whole family unit has been close. Probably even closer when it first happened, because you've always got each other then, you're crying in each other's arms. Particularly when I go to bed at night and think about early days in the Adelaide hospital. I knew he was missing out of the household. It was something terrible, I'd just lie there for a moment and then I'd start crying, and then my husband would hug me. Then another time, he would cry. It was a very sad time, but we're still very much the same. We've always been very close, everyone says that to us, "God, you two", so I don't think it's made any great deal of difference. We help each other when we need it. Even now, we talk about it. Our real feeling on this is "God it's a shame it's happened, shame for him more so than us". We feel he's doing really, really well, but it's not the same lifestyle that he had. But I don't get depressed or anything about it. I guess because we can talk about it. Yeah, you sort of think, 'You poor little bugger', you know? That sort of attitude. But at the same time we don't sympathise with Craig. I don't think you can... no pity, no way, it's happened. Bad luck, get on with life. His sister is even stronger than that and if I even try to go and get him a drink, "Mum, he can do that". Only the other day, he sat down and said, "Mum, could you get me a drink?" and I said "Not just at the moment." His sister then told him "Craig, get it yourself", and I said "Oh, I can do it in a minute", and she said, "He can get it", and he looks at me and smiles, and I said, "Oh yeah, some things never change". Both of them used to be like that when they were at home, even Toni... with the home therapy, they've had to train me.

Future Changes

I wouldn't say it would be like going back to normal. What is normal? You can't say your lifestyle hasn't changed, it has. In one years time, I'm probably going to go to England leaving Craig behind. He'll be trained at some stage before then to deal with his night fears. My husband wasn't sure if I would want to go. I said I would, but we do have to think about Craig. I'm not taking him with me though. If I'm having a holiday, I'm having a holiday. I said in twelve months time, Craig could be fully independent, quite happy being on his own at night. You don't know. I think about what's happened in the last twelve months. Heaps could happen in the next twelve months. My daughter said, "You go for it, we're here, Craig could stay with us, we could stay at your place, what does it matter". We've got lots of friends who have teenage daughters and sons and I'd know they would move in right away, so I'm not worried about Craig in twelve months. I expect he's going to improve a lot, even regain his driver's licence. He can get in that car and do what he wants to do which will be great independence for him. I plan things quite ahead and have even asked the driving instructor, "Do you do night lessons?" I don't think they normally do, but he agreed things take on a different light or image at night. Now for Craig, this might help him get through his night fear. So I feel as time goes on, he's going to have that independence night or day in the car. Who knows? He's probably going to feel quite happy about coming home at night on his own and whatever. So that could change, but if it doesn't, it doesn't.

What helped

Early on, you cry and you really don't know what you're crying about. That's what I found. Because there were no answers, it was more 'why, why?' It was the fear of the unknown, particularly when he was first operated on. It was because they didn't ring us when he had the stroke. As soon as that phone went, I couldn't even understand the chap speaking to me so I handed it to Malcolm and I started crying. I didn't even know what I was crying about but I must have known something was wrong. Things like that. I was talking to Malcolm and I asked him whether we were crying for us, for Craig or for our lifestyle? What was it? The fear of the unknown? I don't know, but I'm just rapt in the hard work Craig has put into it. Possibly we've had a lot to do with it too. The staff, the therapist, really everyone who has put into this guy that is doing so much. And brain injury; I didn't even know it existed prior to this happening to Craig! I never even thought about it, you hear of car accidents and all that type of thing and they say brain damage. But I never thought what type of damage happens to a head. It always happens to other people, always. I've had people ask me "Have you found a reason for it all?" One thing - Craig and his father... maybe that's the reason. It's pulled us all together; we understand things more as well as other people's problems. It's happened, so get on with your life. I keep hoping that his hand's going to work. No one has ever said it would, but we try. I still don't believe it won't work. I've got the thumb movement and the finger! So I reckon there's hope there.

* * *

CLARE

"I've never let it get to me. I'm able to rise above it and I can thank my mother for that. She believed in rising above hardships and heartbreak, and all the rest of it. She taught me the principles for being strong in adversity and I think it's in the genes too. We are rather a strong family. In the female side that is, the males are weak... Huntington's has really been a very big bug-bear to me.

Clare is a seventy-seven year old woman whose life has been touched twice by Huntington's Disease. Firstly in her husband, then later her daughter Julie. She said the stress of it all had adversely affected her health. Despite this, she never lost her "weird" sense of humour.

Her Story

With my husband it was a feeling of hopelessness and it took me a while to know which path to take. With Julie I had noticed her condition coming on for a long time. I was able to cope with that better than with my husband. It wasn't expected with my husband, but I knew it was in the family. I had noticed signs about four years before it was diagnosed, with movement and what-have-you. He changed, becoming violent and very difficult to live with. Julie, well she wasn't with me, and she nursed up until she was diagnosed. But she was so erratic it wasn't funny. Some of the shocking things she did, it's a wonder I'm here to tell the tale. Your whole life falls apart from around you. We had had a good life, but because my husband couldn't work, he became very violent and suicidal. He tried to commit suicide 3 times and just ended up hurting himself. He walked under a semi-trailer and got a bad hit on the head. He was practically a vegetable after that, but it took him seven years to die. It was a combination of both Huntington's Disease and brain injury. He definitely had Huntington's as well, because he remained violent up until his death.

Powerlessness

My daughter's not going to recover and I feel a great sadness for her. I know the inevitability of it, but I'm prepared for the fact that she's not going to get better. My main prayer is that it will not go on too long for her. I would like a quick end for her, and she would like that. She would be very happy to be free from the restraints and everything else that goes along with it. There's no purpose. She's got no purpose to live. Everyday she gets a little more useless and she can't do anything for herself now. It's hopeless. I get so annoyed, I really do - frustrated would be the word to describe it.

What helped

You never know what life holds in store for you. Luckily I was blessed with the courage to carry on and not let things get me down. I have a weird sense of humour. I think I was very strong with my husband, but I was more of a wimp with Julie because she was my daughter. I had her, and the bond there is very, very strong. I feel so different with Julie, than with my husband. She is so much a part of me. There you are, that's life, fate.

No Family Support

There's not been a lot of support from the relatives. Some of my friends are very supportive, but the family tends to ignore it. They never ask me how Julie is, they never go to see her. Really, the only visitors Julie has from the family are Kay and I. They don't want to know. They can't cope with it. If they just rang up now and again and asked, "How's Julie, and how are you?" but they never say about Julie. They'll always ask about Kay. I feel she's nothing to them. It's very sad. The whole thing is sad. But it's not going to get us down.

Telling Others

I never tell strangers. I was here two years before I ever said anything about Julie. I was asked directly "Did you only have the one child?" and I said "Oh no, I have two children". I never talk about it unless I'm asked.

To Care or Not to Care?

We had such a dreadful time with Julie before she was taken into care. At times I just thought I don't want to see, hear, or know anything about her. But when the crunch comes, you do want to see, hear, and know all about her. You see, we didn't handle Julie's admission into care. The social workers from the hospital took over and got her in through the Guardianship Board. After my husband had the accident, he couldn't do a thing for himself. He was in care from then on. But with Julie, we had the most dreadful time. She did the most outlandish things you could ever imagine. Her admission was a sense of relief and I did say to myself, "Well she's in care, I don't want to know another thing about her". I didn't care if I saw her or not because between my husband and her, it had pulled my health down to just about zero. It had a very big telling effect. I had a lot of things wrong with me, my heart condition. Heart attacks were brought on through it all. I just didn't want to know, but that didn't last very long. I can sort of stand on the sidelines now. I know Julie's getting the best care she can ever get and I'm quite happy with it.

Help from Professionals

The social worker from the hospital was wonderful. She gave me terrific support. She and the psychiatrist took over the responsibility for getting Julie admitted. She was looked after, and it took a terrific lot of stress off of me. I don't know what Kay and I might have done because we were just about beside ourselves. We never knew when the police were going to knock on our doors. No, it was dreadful, really dreadful at that time.

Strategies

I've had to develop strategies. I think I've coped very well; I've had my down times... yes I think I have remained very positive. With my husband and Julie, I used to walk a lot in the hills or by the beach. I used to look up to the hills and say, 'Please give me strength to carry on'. I had a little dog in those days.

They never let you close enough to be able to help them. If I suggested something to Julie, she'd go the other way.

A rat can't leave a sinking ship. Well it can, but I didn't. I need not have stayed. I could have taken the girls and left, but in those days, you did not walk out of a marriage. You were looked down on. Nobody knew about that for years, I never told anyone. It nearly destroyed me, but I felt dirty. I just didn't want to talk about my marital problems.

It's very difficult to help people with Huntington's. They want to deny it, but they can see what is going on and they still want to deny it. I always used to say to my husband, "Look, go with the flow, you can't undo what's happening, but you can help yourself by accepting it and going along". But he never could accept it. Julie could never accept it. To me, I have found with my problems, that by accepting and working with them, you overcome them. But they couldn't see that, they went their own bull-headed way.

Regrets

I don't know. It was all new to me with my husband, and I almost felt like I was drowning. I didn't know which way to turn and how I was going to handle it. You can never say in hindsight whether you would have acted differently... Julie, she was so difficult. It was terrible. They were both difficult, but she was very difficult to try and cope with. She always said she was not going to end up like her father. Well she tried, but it never worked. So, there we are. It's just one of those things. But you can't turn the clock back. I did what I could at the time; what I felt I could do.

If I'd known my husband had Huntington's, I'd never have married him, and I would never have had his children. I was unaware until Julie was nearly three and I was pregnant. A cousin of my husband had written to me from Melbourne. He had found out about the disease, and told me. Well, I immediately had an abortion; I wasn't going to bring a third child in with that. I'd found out from the doctor what Huntington's was all about. Anyway, I had the abortion and I felt dirty and terrible. That was one of the worst experiences I have ever been through. But I wasn't going to bring in another child with that hanging over me.

The Future

It's not so difficult, but to me it's a great sadness that she's got to go on floundering through all this business. I hope in six months she's not with us. For her sake, not mine. I can cope; I'm not the one with it. But watching Julie try and cope with it, and knowing how she feels about the situation she's in. It is very difficult in that sense, but I don't let it override my life.

* * *

ANN & REX

"It's very tiring when you're sixty-three, bringing up a six year old. You've got to adjust. Life's always going to throw something up at you sometime or another. No one can escape completely. At some stage in your life you're going to have to make a big adjustment, and that's it, you just have to do it. There's no point in sitting around moping, thinking "I can't do this, or I can't do that, or I can't manage that".

Ann and Rex are parents of Louise and grandparents of Jessica, seven. They live in the country. Louise was severely injured in a motor vehicle accident while studying to

become a social worker. Ann, an ex-teacher and antique shop owner, took over the primary parenting while visiting Louise every second week for a week over three years. Louise died two years ago at the nursing home. This conversation took place in her parents home about a year after Louise died. They were interviewed jointly by two social work students, Beth Gaskin and Krystie Edwards who were members of the research team.

Impact on Family

Ann: It's very tiring. I mean when you're sixty-three, it's fairly tiring bringing up a six year old and adjusting to that again. Especially when most of her friends come here, and they stay overnight or whatever. I just feel you've got to adjust. You've got to be strong. You can't be weak. Life's always going to throw something at you sometime or another. No one can escape completely.

Rex: I'm coping my way with the fishing and one thing and another. But I'm still not coping deep down, because prior to this accident I was always doing something... and I enjoyed it. I just can't get stuck into doing it again.

The Parent's Journey of Care

Improvement

Ann: Well, you feel relief because you know she's over the worst. You know that she's on the way to improving. But you know that she's never going to be like she was. Even so, you don't have time to think, because when you get to Julia Farr, you just work, you work, work, work. You're wheeling them out for walks, you're going to therapy sessions with them - you don't have time to think. I didn't get over to the house until about quarter past 8 at night. You don't even eat properly because you don't have time to eat. People think you think about it all the time. You think about it when you leave. You get upset then, because you know what they were like naturally and know that they're not going to be like it any more. Your time is so busy there. You don't have time to think. That's probably a good thing because you do get upset. Fortunately Louise didn't have any facial disfigurement or anything like that. She looked good. She looked just how she used to look. But in some ways it made the situation even more difficult to come to terms with. At night, you're usually tired. You just zonk out and go to sleep, getting ready for the next day. People don't seem to understand you're working hard all the time - you're not going home to a nice domestic house for a week and sitting and thinking about it. If you're there all the time, you're there working, and trying to do what you can. But you do get upset. Of course you do, who wouldn't? It's a silly question, who wouldn't get upset?

Rex: As far as I was concerned, I didn't see as much of Louise as what Ann did, I had to stay on here and look after things. She was better than I was at looking after her and I had all the washing and everything else to do. Louise's daughter Jessie, was probably a god send. Without her, I probably wouldn't have had as much to do. I would have been hanging around wondering what to do with myself and thinking an awful lot. But having her and also having my younger son here, was a great support. My son has been absolutely marvellous actually, the best out of the three of them really - considering he's had an accident as well. But it was just work, and keeping my mind busy. I read a lot; I do a lot of hard crosswords to keep my mind busy. I don't let my mind get slack, because I don't think you can afford to.

At night I'm not usually too good. That's when I don't have a lot to do, and that's when I try to keep my mind occupied with something, with anything. I think the night time's the worst for everybody because in the daytime you're busy. I think that's the main thing. You just have to keep your mind busy.

I'm a keen fisherman. To go fishing, that was my escape. Ann likes to use her brain. Well, you use your brain when you're fishing too. That was my escape - it still is. I can forget about my worldly problems when I go fishing. We sort of sit there and I have a beer and I've got a mate who's been through the whole lot with me. We can sit there and talk about different things, or we can sit there and talk about nothing.

Ann: I don't sit around here all day not thinking about Louise. I often walk around, believe it or not, talking to Louise. Quite often, all day long, I'm talking to her. Because quite often, to be frank, I think she is here. I feel quite strongly that she's here. So when I'm working I'm talking away to her while I'm doing it. I don't just walk around talking.

I want to do art work again, but I don't get the time to do it because I'm here on my own a lot, and with Jessie, I can't do it when I've got her and other children here.

Rex: You organise when you're going to do it. I'll let it work in with my fishing. I'm back on the work force again now. Now I'm working for the man who was my foreman for twelve years. He's a builder now. It's only part-time which is the only thing that will interfere. If you wanted me to stay home and not go fishing, I'd do that so you could go and have your escape. Then as soon as you've had your time off, then I'd be ready and I'll go off fishing again. But I only go at the very most, five or six days at a time, and that's probably twice a year.

Changes

Rex: We haven't learned.

Ann: Oh, I have. God, I've always adjusted. I've had to all my life to different things because I've travelled a lot, done all sort of jobs, no, I can adjust very easily.

Rex: The financial situation was the bit that knocked us around. I mean we finished up selling the two houses down the street, just about all of it went... on all sorts of things. They went before Louise had the accident.

The houses were sold, but the money went, virtually because of the accident. I mean, we bought an old second hand Mercedes because prior to that we just had a van and at that stage, I thought we'd be getting Louise out of hospital and we couldn't get everyone in the van. This car came up for sale so we bought it. That was more money down the drain virtually. We didn't really need another car. I realised after I had it twelve months that I wouldn't be using that car for Louise. The financial burden was a big thing but what it did to the family was more than money as far as I can say.

Ann: We've got a very coping family. The boys have coped extremely well.

Rex: Well, they've been brought up to it haven't they? We lost a four year old son in a drowning accident. That was a while ago. They learned to cope from then. Then we nearly lost Justin, and then I had a gelignite accident in my fencing business. I was in the Royal Adelaide for a month. They didn't know what my chances would be, but I told them I was going to be okay, which I was. The local copper said to me he's seen four blokes in a similar sort of accident before and they didn't get out of it. The boys learned to cope because of that sort of thing, I think. But the one that has to cope with it most, is little Jessie. We still don't know how she's going to go through life. She might be alright, we hope she will. That's the worst scenario of this whole situation with the coping bit, whether Jessie will cope with it. Not just now, she's getting by fine, but later in life.

Ann: Yes, again, all I can remember is you work. You do all you can, and you're fairly exhausted yourself, and you just get on with it. You don't have time to think about these things. You just get on with your normal life. I used to just walk in and talk to her like I always did, and say "Mum's here, we'll go for a walk, or do this, or whatever". I made her comfortable, and made sure everything was right. When someone can't respond to you, it's pretty hard. But she always knew when I was there. She knew I was coming and she was always a little bit upset as I was when I had to go. I never wanted to go, but I had to - I had to come home. I was very aware that she always knew I was going.

And that's why I reckon you should talk about these things, particularly to people who are in that situation and also to people who aren't, who never have been and possibly never will be. But it gives them food for thought, that there's always a chance that it might happen to them. I reckon it does help to talk about it.

Grief

Ann: Yes. It helped my to get over my grief, I'm sure it did. Nothing really helps, It's going to be with us for the rest of our lives. You never get over losing any of your kids, our one and only daughter.

It's very tiring when you're sixty-three, bringing up a six year old. You've got to adjust. Life's always going to throw something up at you sometime or another. No one can escape completely. At some stage in your life you're going to have to make a big adjustment, and that's it, you just have to do it. There's no point in sitting around moping, thinking "I can't do this, or I can't do that, or I can't manage that". If you don't then everything else goes wrong, you see. No, I don't have to be a teacher. Taking on a job is no big problem, except it's tiring when you're older. You want to sit down for five minutes, "Nanny..." you don't get any peace, because they always want to do something or tell you something. I'd rather be going all the time than sitting around looking at myself. I like to be doing things all the time, particularly mentally, because I think that as you get older, you deteriorate.

Rex: Like I said, I'm coping in my way with the fishing and one thing and another but I'm still not coping deep down. Prior to this accident I was always busy, like I've got two shops and I was always doing something... and I enjoyed it. I just can't get stuck into doing it again.

Ann: Well, I did lose a bit of interest in the antique shop. I mean I love my business, and I love my auctions, but I did get to the stage where I couldn't be bothered with it. I wasn't interested. I thought, I've just got to get back into the business. We needed the money.

Rex: I keep saying that to myself too. The only reason, I accept this work from my mate is because I knew when we've got to do a job, we have to pull together, and we've got to work together. I mean, I'm not going to get paid if I don't go and do the job, and he can be a hard boss sometimes. But it doesn't worry me. It's one way of getting me back, mobile again. If I just sat down and said "I don't want to work here", I'm going to get sick of fishing. I don't go all the time. I wouldn't want to go all the time, so that would be my only escape. I've got to work. I just can't get back into pushing myself... I've lost motivation because of what happened.

Ann: I lost it too, but I've realised now that I've got to have it. It's a necessity apart from the money, I've got to have something to be interested in, but I did lose interest.

Regrets

Ann: I don't know. I mean, it was all this rushing up and down and everything. I often think perhaps I should have permanently lived there, in Adelaide, stayed there full time, like a friend of mine did. She lived in Adelaide. But she was there all day and everyday, and all night. She slept there a lot. I often think I should have stayed there all the time. But it was really impossible. There were parents who didn't do that anyway, even the ones that lived in Adelaide. Some of them weren't there as often as I was. I don't know what I could have done that would have been different. I mean I fought like hell with other parents there to get better therapy, better everything. We couldn't have done much more in that area. We fought for everything that was wrong. I think I did as much as I possibly could have, without burning myself out.

Future Plans

Ann: I don't think about things like that. I just work day to day. I get up today, get through the day, then get through tomorrow. I don't make any great plans about things like that because you never know what's going to happen, so what's the point? With what we've come through you don't depend on anything any more. You just work from day to day. I don't mean stupid things, like a school concert next week, or a problem with a teacher. That's different. Apart from that, I just keep going, doing what I'm doing, if I want to do something else, I'll do it. I'm a creature of impulse, I'll do it next week if I feel like it. I don't think it's any big deal planning ahead for months because things often don't turn out the way you think they will. Then you get a tremendous disappointment. Anyway, I may be dead tomorrow, who knows? At my age you could pop off overnight. But I do work towards certain things, make sure everything is all right financially.

Rex: When I think about doing things I usually do it, I've been planning a trip to England for six years, it is sixteen years since I've been home. My wife talked me into the first trip, which is when I met her, I'd only been here four years and I did a trip home. The next one was going to be 25 years later. Because I lost a brother in England, that's when she said I should go home and see them before they all pop off. Sure enough another three have died since that trip. I have been planning this trip home for about six years, since when Justin had his accident actually. It's been about 2 months since that trip home. I really shouldn't have gone; I should have hung onto the money. Two of the boys went too. I didn't let that stand in my way. We had lost Louise, so I decided to do it.

Ann: I only went once, and that was a very quick trip. I didn't have a wonderful trip because I took Justin with me. He'd been bashed up and in hospital for a fortnight before and he was a nervous wreck. He had a previous head injury anyway. So I went with him simply because I wouldn't let him go on his own. It wasn't that wonderful really, because it was all work. I was so worried about him, if he was drinking etc.

The next thing that I've got planned is to do as much as I can for Jessie. I think that's all we have got to live for now.

Rex: Oh, rubbish, that's a silly thing to say.

Ann: Not all we have to live for, but we must take the place of mother and father... that's in the future. We're planning for that. That's virtually all I'm living for, I've made up my mind that I'm going to live until I'm ninety just for that reason.

* * *

Caring for a Sibling, Mother and Extended family members

BLOOD IS THICKER THAN WATER

Caring for extended family members

CARING FOR A BROTHER

CARING FOR A GRANDSON

Age

Gender

Non parental and non spouse carers make up ten per cent of carers in my study. In this book they tend to represent the oldest and the youngest carers. Sister carers are easier to find than brother carers, from experience. They appear to be able to share their mother's parenting and nurturing role. Grandparents who are carers are rare. They need to be healthy, mobile (have a car and able to drive one) and non-working. Often they are over sixty, have bonded well with their grandchildren when they were young, and flexible enough to be trusted by their children. Amazingly, they appear to possess the important quality of being young at heart. I have seen a lot more grandmothers than grandfathers but the few grandfathers I come across exhibited a high degree of commitment to their carer role.

* * *

JEAN

"He gets Carer's Support Group and Respite Centre. They send a carer to take Dick out one Thursday a fortnight for two and half-hours. And they have carer's days off when they come in and look after Dick and you have the same carer all the time. They take him and they get a bus and take you out for lunch. It is great - just a day off."

Jean is Dick's sister-in-law. They hardly knew one another before she agreed to take on the daunting task of being his full time relative carer. She calls herself just a "housewife" doing her duty in a practical, no-nonsense manner for her husband who is a breadwinner. I find her self-effacing way of describing this demanding task very touching. She has now a close relationship with Dick. Being his carer is very satisfying for her, as she is alone at home in the daytime. It filled a void in her life. She never thought of it as burdensome. Jean and her husband share the daily tasks and solve problems as they appear without fuss. After a year Jean has come to know Dick well. She had experienced behavioural problems and back strain. With help from professionals and family she was able to enjoy this new nurturing role. Being a resourceful carer, she is not afraid to ask for help when she needs it and realises the need to look after her own health.

Initial Shock

We were shocked. He's come a long way. The doctor said that he'd be like a vegetable, but look at him now. He's starting to talk and everything. Yes, he's come a long way. And the electric wheelchair - that's the brunt of it all. Ever since he's got that everything has been good. He's got his own independence. He goes around the block on his own. It takes him ten minutes to go around the block. He cannot cross roads, because he's not allowed to. He just does the block. He loves it - he's independent. Well, he can do something on his own.

Family Support

With my husband being the youngest brother of nine in their family, but the others were too old, so he came and lived with us, and they come and visit me every now and then, but not as often. But if we ever need anyone to stay with Dick while we go out for a few hours, they come and look after him. It is a lot of change, because either one of us has to stay home all the time, or we get a family member come in the look after Dick while we go out. Dick might be able to do little things more like lifting his bottom a bit higher than what he normally does, which is a little bit more help. I did my back in with Dick and once he knew I'd hurt my back, he had to do a little bit more. I went to do a manual handling course and learned to roll him properly and that was a good help. My back is 100% better now.

Dick goes out three times a week on his own and I get time for a couple of hours so that's good. That's enough for me. I've got an Auntie who cared for her husband's brother so it is nothing new. The only trouble is when I try to get my housework done. You tell Dick not to come out on the wet floor, but he still comes out. We did not really mind it.

Family Becoming Closer

Because we have to do everything together, like helping him shower, he is different from before. There's a closeness, friendship and communication. I know him better than what anybody does and he knows me. I'm much closer with him than before because I had to do a lot of things with him. What you do for him he does in return for us. He does things around here. He has cooked himself an egg and stuff like that. He's improved heaps. He's been home about sixteen months now. You have your bad days. It was bad at first. He couldn't handle that I was his sister and I was helping him shower - it used to take an hour and a half when he first came home for his to have a shower. But now we've got it down pat and it only takes ten or fifteen minutes for him to shower.

Lifestyle Changes

He gets Carer's Support Group and Respite Centre. They send a carer to take Dick out one Thursday a fortnight for two and a half hours. And they have carer's days off when they come in and look after Dick and you have the same carer all the time. They take him and they get a bus and take you out for lunch. It is great - just a day off. We went from 9:30am to 3:30pm so, it was a good day.

Role Changes

Before Dick came to live with me I was just a housewife. Stayed home, had no kids to worry about, but now with Dick, it's just like having a child in your home again. He watches all the children's shows. He goes on a holiday every four months for two weeks. We tell him it's like a holiday for him to get away from us. Not the other way around. Otherwise that might seem as though we are trying to push him out. He goes on his holiday, he likes going there, and it gives me and my husband a break to be together as a married couple. Being a carer hasn't affected me in a bad way. It does affect us because you start to have little fights, niggly fights, you and your husband, but you get over them.

Behavioural Challenges

Dick handled it pretty well. He had his therapy he was going to and he was doing well. He's been right. He had a problem with pain and he had a bit of haemorrhoid problems. When he started taking his frustrations out on me and went to hit me a few times, but I put a stop to that. I put him into respite care, into a nursing home for a week to let him know it is not on when he comes home here to us. He hasn't done it once and now he's got no pain and he's got that electric wheelchair. You hardly every hear him swear or try to hit me any more. So it's good.

Help From Professionals

He was going to Rehabilitation Services, getting therapy from them, and the social worker up there helped me a lot and got him into a nursing home because I couldn't even see him. I was in tears and just couldn't handle it after the last one, and she took me home to pack his clothes and get him to the nursing home. It was good. He plays lawn bowls. On Wednesdays here he's got a talk back group that he goes to at Paradise, and he goes to the Friday Club on Fridays. He's out three days a week, sometimes four.

Issues of Dependence versus Independence

Everybody needs his independence. The only time Dick gets his independence is when he goes around the block for ten minutes, or when he's in bed. Everybody needs that. Sometimes when it is not hot, he goes around the block three or four times at a time and I don't see him for half an hour. He needs his independence just as much as anybody does. It is not an issue. He goes around the block when he needs to be on his own. Now he knows, he gets out and walks. We make him talk a lot more now.

No Regrets

I would do it again. He's my husband's brother, even though I'm not his blood, I'm his family.

I'm hoping everybody will be happy. My husband comes home from work, and he works from here. He does the washing sometimes. He's always there for me as support. They've always been close, being the two youngest. Dick and I weren't that close beforehand. He used to come down and watch the football with Pat and we had BBQs, etc. But Peter was closer than I was. There was a lady out there and she was 43 years old. Her husband got MS when he was about 27 and he's only 42 now, so she's put up with it all these years, and you've got to have lifters for him. He can't transfer on his own.

* * *

LINDA

"If I could turn the clock back, I would have made it easier on myself as well. I've sort of sacrificed my whole life for him, and really I shouldn't have done it that way".

Linda, 16, was with her brother in the car when the accident, which resulted in her brother's brain injuries, happened. She had to run for miles to get help for him. She assisted him in his rehabilitation and later helped him to adjust to his home environment in the country. Linda was extremely brave and positive about her experience.

Emotional Journeys During Recovery

I feel proud of him. He can get on top of it and get better. I always think if it was me there, I don't know if I'd do as well as he is. I feel so happy for him, and so proud of him that he's getting on top of it and progressing with it. It just makes me smile inside to think that he's actually getting better. I mean, I saw how he was, and to see how he is progressing now, it makes me so happy that he is going to get better. I can see him getting better, which is the best thing about it. I can see the way he is progressing, and it's just amazing. It makes you feel less worried, and light and happy inside.

Family Reorganisation

After the accident I'd have to say our family has become a lot closer. My parents have learnt to deal with the fact that Gary and I are both really responsible adults. They've come to see us differently. I think that's made our family closer because – before, I think in a way they didn't trust us fully. Now that we've been through all that we have, that's really made the whole family a lot closer. My brother and I both know that they trust us so that makes us happier to talk to them about things as well. We just know that they trust us a lot more now. It has made us more aware of what each other are going through in our lives, and what each of us are feeling. Before, each one of us was like an independent person. Now we come together a lot more than we used to.

Disclosure

Telling or not telling people has been an issue. Some people are happy to talk about it, like counsellors, family and close friends and so on. I'm happy to talk about it with them because it does make you feel a lot better getting it off your chest. But there have been other people that I really don't want to discuss it with because I feel that if I went into it with them they just wouldn't understand. So you just don't even bother. I mean, you just say what happened and that he's going to get better. But you don't really go into great detail because they just don't seem to understand or care. There are lots of times that you just don't want to talk about it. Obviously after something like this happens, you want to have time to yourself sometimes. People are forever bugging you saying, "Are you OK? What happened?" You just don't want to talk about it because you feel like talking. But there are a lot of people that you will talk to, and it does help to talk to people, and it has helped me a lot. Normally I don't talk to people about my problems. But I've found in this situation that it does help to get things off your chest.

Family Relationship Changes

Our relationship between my brother and I has become a lot closer, I think. Before the accident we were close. We always have been close, but we never really talked to each other about really personal stuff. After this happened, I think it has helped both of us because we were in the accident together. It has helped us to talk about the accident, talk about what happened. Because we were both there together, it has brought us a lot closer. We understand each other a lot better now. Some people you talk to, fair enough they can understand what you are going through, but they weren't there when the accident happened. They don't know exactly what happened. Whereas my brother and I were there together and he doesn't remember some things about the accident. I've filled him in on the details, and it has really helped both of us to talk about it together. It has really brought us a lot closer in understanding what each other's feelings are and what each of us is going through now.

Helping Strategies

I wouldn't exactly say I've developed a lot of strategies. But I have become a lot more organised and a lot more mature in my way of thinking about things, such as dealing with police and dealing with insurances and so on. It has helped me to really realise what goes on. It's made me be a lot more organised and a lot more mature in my way of looking at things so that I don't all of a sudden get worried and wish that "Dad can do it". Now I've really got to look at it, and say, well it's my responsibility. I have to sort it out because at the moment Dad's not here. I've just got to do what I can. It has opened my eyes to a lot of things and I've looked at things a lot differently now. Really the best thing when something like this happens is: don't freak out when the doctors tell you all these things about what might be, because there's really no point. You just have to take things day by day and see what's happening. It's no use jumping to conclusions. You have to take things as they come and then you deal with it. You have to take it easy and organise your life a bit more to work around it.

Personal Changes

There have been a lot of changes in my life since this happened. When it first happened, my life got put on hold. I dropped out of school and just wanted to be here with my brother and do everything for him. But now it's getting to the stage where I know that he is going to get better. The next semester is starting again. Now I have to look at it for myself, and say "Well hang on". I can't put my life on hold forever. He's going to get better. Mum can be here with him. I've really got to go back home now, and go back to school and start getting on with my life again, now that I know he's going to get better. In a couple of weeks he's going to be home, hopefully. I have to say that I've done all that I can do. Now it's my turn to start my life again. I can't continually put it on hold. It's just a matter now of learning to not forever put my life on hold. Or else you're just stuffing up your own dreams. You can't make everything better for them. You just do what you can and what you can't do you leave to the therapists and get on with your own life. That's really what I've learnt. To do what I can while I'm here and when it comes to the point where I have to go home I've got to learn to go home and just hope that my brother can deal with things himself for the next couple of weeks until he can come home too, because I've really done all that I can do.

Follow Your Heart

It has been really difficult because none of our family and nobody that I know has ever really been in this situation before. I didn't know what I could and didn't know what I should be doing. It was hard to find the right approach to deal with that. Now I've learnt that you just have to do what you can do. Do what you feel is right in your own heart. If you feel you just want to sit with them or - you just have to do whatever you feel in you own heart needs to be done. For me I felt being here for a start was the best thing for me to do. I thought that I could make all the difference, and that was fine, that did help. But now it's got to the point where, fair enough, I've got to go home and he's going to stay here for a little bit longer. You just have to do what your heart tells you to do. If you want to be here, or being at home, or going out, or leaving it to the doctors. Take it as it comes. Nobody can tell you the right approach. There isn't really one right approach. Everybody has different feelings, everybody goes through different things, so you've really got to do what you think is right at the time.

Dependence vs. Independence

Well, my brother has this thing that when he goes home he'll be able to just go straight back to living in his own house and doing things the way he used to be. He just wants to be independent and he just wants to be the way he was before. It has been hard for me and my parents because the doctors have told us, and we can see that he won't be able to just go back home and do everything he used to do. It's been really hard for us to try to tell him because he's very stubborn. He thinks "I'll be alright - I can go back and do what I used to". But it's not going to be like that. It's just not going to happen that easy. Even when he gets home, it's going to be hard for us. We're going to have to keep an eye on him to make sure that he doesn't go and jump into things that are stupid. Because he can't go back and do what he wants to do. It's putting his own life at risk too. It's just not possible for him to do everything he used to because he's not the same person he used to be. So it has been really hard for us to try to tell him to not be so independent, that we have to help a bit.

Since we have been talking to him about it, and the doctors have told him too. It's just really a matter of sitting down and talking, and pointing out what has happened and what's different in them now. Eventually they do realise because they will try to do some things and they work out that they just can't do it. You have to convince them.

Regrets

If I could turn things back straight after the accident happened I wish I could have just gone back and erased it all, and done everything different. I wish that we'd never got in the car. I wish that we'd never been drinking. I wish that we'd never gone to our mate's place. I just wish that everything hadn't happened. I would have done things differently. Like, even at the time of the accident, if I could have done it differently, I wouldn't have let it happen. But even after the accident too, like when I was in hospital, I think now that I would have done things differently. If I could go back, then I would have stayed with him for the first couple of weeks and then gone back home and then sort of come back just on week-ends. Because really I have put a hold on my life. It wasn't the right thing to do. I really shouldn't have devoted myself so much to my brother. It has helped him for me to be there, but it really wasn't necessary for me to be there all of the time.

When he was in intensive care I felt I had to be there. I think that did help, but after he got out of intensive care, even if I'd gone home and just come back for the week-ends, I think that would have been alright. Going back to school now is going to be really, really hard. I'm going to have to work overtime to catch up on what I've missed out on. If I could really turn back the clock it wouldn't have happened. But to have to go back and have to re-do this all again, I would just spend half the time here instead of all the time.

The Future

It's sort of easier for us than a lot of people because we have been told that Gary is going to get better. So in six months time he's going to be home. But in the next months it is going to be hard settling him back down to home. It's going to be hard to stop him from doing all the things he wanted to do. I think it's going to be hard for him because people at home aren't used to dealing with what we've been through. We're sort of going to be on our own a bit. The next six months is going to be hard until Gary has his full strength back and until he has his swallowing and so on really organised. But in a year, eighteen months, I think pretty much he will back to normal and he'll have his licence back. He'll be driving again hopefully. So, yes, we're hoping for the future. The near future is going to be the hardest, but in the long run things are going to work out OK. I hope, so it is looking good for us in the future. When he gets home, OK see what he starts doing and deal with that and as it's getting better it's a matter of dealing with each thing as it happens. It does get easier. I mean, it already has since he's been at the nursing home. I think life is going to get back to normal. We're never going to forget what happened and never wipe it from our minds. It's always going to be there, but life will get back to normal. He'll start doing the things he used to do. He's going to get stronger and be back to the way he used to be. It's just a matter of waiting to see what happens, taking it as it comes and believing that he is going to get better.

* * *

JENNI

"Many of my friends have learnt from Michael's accident. There are a lot of them who couldn't go into hospitals, but now they're much stronger through him. There are more positives than negatives that have come out of this. It's been an eye opener. It's been a leveller. You have to deal with it and you can't evade it. You have to be positive otherwise you get swallowed up in it and you don't survive".

Jenni treats Michael, her nephew, as if he was her son, because of a promise made to his mother who died of cancer many years ago. She has a fighting spirit, which she uses to Michael's advantage.

What Helped

I've always been fairly strong with different things that have happened family-wise, but you learn that if you don't ask, you don't get. If you don't demand, you don't get. You learn to follow things up, day after day after day. If they miss out one day, they go backwards and it takes two days to get them back up again. Time is very precious. You get to the point where you have had enough of institutions and all you want is out. You push harder and you become stronger and probably more demanding because you know that it's there. You know it is possible to get it if you put enough effort in.

It's been a great learning process. Many of my friends have learnt from Michael's accident. There are a lot of them who couldn't go into hospitals, but now they're much stronger through him. There are more positives than negatives that have come out of this. It's been an eye opener. It's been a leveller. You have to deal with it and you can't evade it. You have to be positive otherwise you get swallowed up in it and you don't survive.

Your life changes dramatically. You just have to accept everything as it is. If you can better it, you better it and if you can't better it, that's the way it is. It's either 100% or you don't make it.

Past Reflections

I made his mother a promise just before she died. I promised that if anything happened to Michael, I would be there as a mother. From the moment he had the accident, I was there as his mother, and would have done anything for him that I would have done for any of my boys. So it wasn't a decision, I had said I would do it and I did. You don't ever expect something of this huge, probable devastation at the time, can happen. But it did, and you deal with it. His Dad needed some support and we get on pretty well.

Michael's always been an independent person and the more independent he gets, the better off he will be. We encourage it and push him along and he accepts it quite willingly.

If I could have done anything differently, I would have learnt to fight harder earlier. We lost probably three weeks when we didn't ask enough questions and whatever else. It hasn't been detrimental to Michael at all, but we probably went through a few headaches that we needn't have gone through. I stood my ground and I would do it exactly the same way again. We had a total of six months at the hospital. We had a month in intensive care, then five months in R5 at the hospital. It was an experience.

Envisaging the Future

Well you can't, because you never know what's going to happen down the track. We've learnt that. You take each day and you get the best you can out of that day. Tomorrow you get on with it and do better again. You don't look back, you just look day by day.

Advice to Others

Carers and providers must not be scared of the system. The system is there to be used. You'll get funding this and funding that and all the other things but you go above and beyond that. That's not our problem - that's the Government's problem. You fight for what you want and you can get it if you fight hard enough. It's there and you may get put from one place to another, and from person to person, but you follow it through and you don't let them bop you off. It is red tape, typical Government run around. We're not looking at car registrations, we're looking at people's lives and getting them back into society. The quicker they're back, the less costly they are to the Government in any case. Why bring them back if you can't deal with them? I mean, they fight to save their lives in hospitals. They've got to be prepared to put in when we do get them to a stage where they need the extra help to be out in society.

I just think a lot of people hope and don't expect that their child, husband or whatever, is in the situation they are in. Maybe because they don't think that they can cope with it, but as soon as they face up to it, or talk to somebody, it makes it a lot easier for them. A lot of them are in denial, and that's the hardest part. It's happened, it's there, and it's looking you in the face. You know exactly what's happened and you do the best you can with what you've got. We have never lied to Michael. If something's going to happen that's not nice, that's bad luck because it's going to happen in any case. He'd never trust you if you did lie. No, we've got to take it straight on the chin.

* * *

MARY

"I remember the first time Paul spoke and he was coming out of his coma gradually and this was two weeks after he had been assaulted and I felt so jubilant and the nurse asked him who I was and he said 'my sister'. Then a few days later he walked and it was like seeing a baby or a toddler on their first steps. These were milestones and I felt so relieved and pleased. A lot of gratitude because there were times that I wasn't sure that he was going to survive. With all of these milestones, it was steps on the road to his recovery."

Mary and Paul were separated in childhood when their parents divorced. Mary is Paul's elder sister. But the love Mary had for her brother endured, despite that their adult lifestyles were very different. Paul is very trusting and friendly whereas Mary is streetwise and more discerning. Paul lived in Mary's house for nearly a year prior to his injury He has always looked up to her as the younger brother. This childhood bonding enabled Mary to help Paul in his head injury rehabilitation. Sustained by his mother and Mary Paul successfully recovered well enough to live in the community. Paul is highly appreciative of what his sister did for him. As Paul achieved his goal of autonomy Mary was able to relinquish her carer role.

Response after Injury

I felt shocked and I was also tired because I had been out all day and it was hard because I wasn't aware until hours after it had happened. I got home and it was about 11 o'clock at night and there was a card under the door from the Major Crime Squad. Then there was a message on the answering machine from the Hospital and I remember feeling shocked and overwhelmed on top of a long day, at the end of a difficult year.

Recovery

It's wonderful. I remember the first time Paul spoke and he was coming out of his coma gradually and this was two weeks after he had been assaulted and I felt so jubilant and the nurse asked him who I was and he said "my sister". Then a few days later he walked and it was like seeing a baby or a toddler on their first steps. These were milestones and I felt so relieved and pleased. A lot of gratitude because there were times that I wasn't sure that he was going to survive. With all of these milestones, it was steps on the road to his recovery.

When I think about Paul's disabilities, it's not only been since the assault and closed head injury. Paul was living with me for eight months prior to the assault, There were some major challenges for him around drug and alcohol abuse and also he had some health challenges as well. He was depressed at the time and my brother had some learning problems with dyslexia, so it meant that I was a carer for him then, and that there was quite a burden at times. In fact, the irony now is that with him being in rehabilitation and within the system, that the burden is a lot less in there now that it was prior to the assault and when he was living with me.

Telling Others

Yes it has been a problem. I actually had a situation yesterday where I was at a wedding and there was a friend there. The friend told her sister about Paul. It wasn't my choice and it wasn't something I would have chosen to speak about at a wedding. I've found that one of the issues has been about maintaining some control over who I tell, when I tell and how much I get to tell the story. As it has gone, I've found that I've wanted to speak less and less about it because it's emotionally draining and I found early on too, dealing with other people's responses was draining. About retaining control about who I tell and when and how much is that I've found that since it happened that I've had a small group of friends who were very supportive and that they've added something to me and to the experience and that seems to be about not putting their responses on to me and being really into being there for me and thoughtful about money.

Towards Autonomy

I was spending a lot of time with Paul, and when he was still in a coma, of being a real companion and support person and carer for him, beyond what some other adult siblings would do. Now it's more about stepping back at times and that's hard for me to do. I feel that it is actually best for Paul and best for me and saying things to Paul like. I really hope that he can start to stand on his own feet, more in that, I still love him and support him. Part of that is knowing and trusting that Paul has support and that there are others who are assisting him towards independence. I've found since Paul's been assaulted, in his whole journey of recovery, that it's difficult for me not to be protective of him. And as he's improved, he's starting to want to become more independent and that might mean him making choices that I don't necessarily agree with. Now that's quite hard at times, and at times I said to him I'm not necessarily going to agree with your choices but I can respect your right to make the choices, even though they may not be the choices that I would make. And that's part of fostering independence - is that trust and he's an adult and this is about standing on his own feet and then I am a sibling and not his parent.

Guilt

After Paul was assaulted, I felt quite a lot of guilt and that I'd failed in my job of protecting him. I had warned Paul about the person who assaulted him because they were friends and I felt that I had said to him to be careful, that I wouldn't cross with this particular person. That's something that I've had to work through. It wasn't my responsibility and there wasn't anything else that I could do because I think in situations like this we think that if in some way we're responsible and take all this responsibility that is actually not ours, then somehow we're more in control of the situation. In having to accept that night I had no control of this situation and it happened. It's accepting that.

* * *

MARIE

"To me, she's part of my life. I care for an elderly mother and I'm lucky Mum is able to articulate with me and communicate with me and I look for little blessings. I think how many people who've got their mother at 87 who can do that. She might be in care, and she might be sometimes scowling and very frail but then she's also got determination and that spark."

Marie and her father cared for Edna at home for years with absolute commitment and devotion. Marie, a highly qualified nurse, feeds her aged and blind mother evening dinner. She has a full time job during the day and this extra burden of care means that she has little time for herself, particularly on the weekends. She felt that as a single daughter, she couldn't escape from this role reversal though she does have two married sisters. On weekends she normally has meals in hotels with her father who is tired of cooking. Her father willingly shares the caring responsibility with her, but his health is failing. It is likely that Marie will end up as the guardian in future. She finds it challenging to negotiate decisions with the organisation providing care, as communication is difficult. Fortunately, due to her training and experience, she is an excellent advocate for her mother. Hopefully, Maire and the organisation can work collaboratively for the benefit of her mother eventually.

It started in 1989 when Mum had a breakdown after my eldest nephew was killed at Prince Alfred College, at the rowing club. That was the day before her 75th birthday and she became very depressed.

It is a very disheartening task because even though we tried so hard to make sure she maintains a good quality of life and good health you still get disappointed. We look for ways for trying to improve her health and we are often aware that we are totally on our own. We felt isolated. Is the anti-depressant too much? Does she need to have that antibiotic now? It's just constant effort, work and worry. We seldom have time to ourselves, because we are always worrying about her and we've got to be there physically.

I've got two sisters and their husbands, Dad and me. But they visit only once a week, and sometimes not even that, sometimes more often, it depends on how ill Mum is and I guess it is just left to Dad and I. And they are not always aware of what's happening and we try and keep them informed. But then you get so exhausted, to ring them up late at night. When you've got a bit of time, it seems a bit much. But I keep them posted if Mum gets to hospital, then I give them a ring. It's been very exhausting too, because you have to have to go to hospital very late at night. Dad's eighty-six so it's exhausting for Marie. Mum got back to the nursing home after hospital discharge at 8:30am and then the doctor diagnosed her as suffering from bronchitis. I got there at 5:30pm and it looked like she was going. I could see straight away she had pneumonia and pleurisy and of course made demands on the doctor. It was another visit into the Hospital Emergency department straight away. I hadn't had any tea and Dad and I were dozing off in the A & E Department there about 1:00 in the morning. We got home at 2am.

To me, she's part of my life. I care for an elderly mother and I'm lucky Mum is able to articulate with me and communicate with me and I look for little blessings. I think how many people who've got their mother at 87 who can do that. She might be in care, and she might be sometimes scowling and very frail but then she's also got determination and that spark.

Role Reversal

I think it is certainly role reversal because I've become like her mother. Even though she's still my Mum. The most unique relationship that you get in is this daughter carer situation. I previously talked to relatives in a professional role. I used to be able to talk to people about chronic disabilities but when it is your mother, it is quite different. I find it quite ironic at times because she's such a strong mother and we have always been very close, but now I'm like her mother too. She's got quite used to it. She said I'm bossy and she calls me a bully and says Dad also a bully, but then I know she does not mean it. People say, "She's terrible to you, you are a wonderful daughter," I just brush it off. It just doesn't mean a thing. I have to be a little bit strong with her, otherwise nothing would be happening with her. I've got to assume that role. I'm like the matriarch of the family, which wasn't my choice, but I fell into it because I'm the strong one, I'm a nurse and I'm a single daughter. I am like the matron- Marie can do it all. That came from the doctor. I've got to do everything. Well she's hearing impaired too. So I say do you want me to ring the doctor? She says yes dear. Do you want me to do that dear? She's started to do some things and I said thank goodness that I'm there. She's very good.

I've asked my sisters for help. I've said to them from the beginning, can you call me and just visit with Mum and give her tea or something and then I can have a break. On no, I've got two sisters. You wouldn't know, everyone thinks I'm an only child.

I've got to be extremely sensitive when I visit there, not to upset people, and you can't upset anyone. Tiny things upset them. We are very much treading on glass a lot of the time. I was so tired I was there from just after breakfast and I've got a severe back injury at the moment and I'm really struggling, facing neurosurgery I might just say. Because I have qualifications in nursing staff, often assume that I will be always happy to monitor the administration of medicine. I think it's a staff morale problem

Life Changes

I've had ten jobs in two and three quarter years. Not related to Mother, just the employment process. It has been hard because of Edna's visual problems. There are variable visual problems. She can see down to the bottom line without glasses, one eye is no good, but the other eye is fine. But she shuts her eyes. She's shutting out the world, which has been very distressing for her.

We would like her to be more independent, we bought another electric wheelchair, but she lost her confidence. She goes so slowly, it is not going to hurt anyone. I encourage Mum, for example, I wash her hands and her face every night, and I say, you can wash your face, can you take out your teeth, and I do all that. Sometimes she says I can't, you do it, that's the sort of thing - as basic as that - and I want Mum to do more for herself if possible. I try and encourage her to feed herself, but she gets upset that she might spill something on her. That's why I got Blind Welfare out. Life progresses. I didn't think I would be putting in all this time. I thought things might get easier if she's in care, but I soon realised it gets harder. I ended up feeling like I'm running my own nursing home, with one person in it. That's how I feel.

Mum was offered a two-bed room when she first left the hospital in the Medical Centre and she was able to walk in there. Mum stayed one hour! We took Mum home for a few more months. About after a few weeks, dad was getting ill with this leukaemia, so then she said I'm going to have to go into care. That was very hard for her and she left a beautiful home and big garden with roses and camellias she had for all those years, to go into sharing a four-bed room, and this means the losses are huge for everyone. There's no room to sit and visit her but her doctor was the doctor that's on there and I had put her on the list there. So, I think in another one, like a church one, there would be more quality of life things, like more volunteers, people to talk to, make friends with. All her friends are dead or in care. She's only got a sister, and a brother, and his wife who visits sometimes. There's no one else alive to visit much. Her grandchildren visit rarely. So it's a disheartening thing, with all those losses, that's why I try and compensate all I can. My life has been on hold for years and if I do have lunch with someone, it is now after Mum's lunch. I say well I'll meet you at the Parade or Burnside Village. I say I can meet you and we'll have a quick meal and then I get back there to be with Mum. I find with shopping, I grab a few things at once, and that's how I have to live. Housework, everything else, it's difficult. Not just because I've got a disability. It is a time factor. I'm up till maybe one o'clock in the morning doing washing and putting things in the dryer, then get up early next day to try and be on time for breakfast there. But to compensate all this, at least Mum's got Dad and I.

The Future

It is impossible for Marie to envisage the future because she doesn't know what's happening with Mum. Once Mum goes I could do a bit of travelling. I haven't had a holiday for years. Dad and I went away for a few days back in 1998 and Mum was pretty well, reading novels and all this business, and just little extra things for us to go and I can't think of it now. I can't get away for one night. For me to go away and miss an evening meal, I've got to organise around it. And I have a meeting, I'm involved in a committee, and I go once a month, it's at the Adelaide Clinic. Even then I get back in time to do some dessert. I don't have to do it, but I want to do it. It is my choice, but then it gets to be a routine and you know very well the nurses can't get as much food into Mum. We were looking at tube feeding recently the doctor wouldn't do it. He said no because she says no. I had a long talk to him and he said she's very frail, and didn't think she would see 90 so anyway,

I'm not going to tell that to Mum. I said to her - I had a good talk to Doctor. I think your world shrinks because your friends disappear unless you try quite hard to keep them and you are so tired you don't make the same regular phone calls or even bother at times to ring people. And you can't take a lunch off to do something. I've got to get to be with Mum, with such frail health and this could go on for years. I've been amazed at how long she's kept on going. You lose all that support network and people, like your friends, lecture you. You've got to do things for yourself. You are exhausted. Absolutely exhausted because you don't just sit down when you visit - you are doing things. You are doing the general work. Mum's got very prescriptive care needs. She has so many waters, fresh water, in the big bottle, and all the glasses, everything has to be just right. There's no one else to do it. The nurses say they couldn't cope with it. Someone has to do it. Everything shrinks. Your self esteem too. You are so tied up with being a carer, you can't go on. That's me. That's what I do the best, really. It doesn't mean a thing to other people. If they've have got elderly parents, they are going through it. Then you hear their story. I'm not ashamed of it. People say what are you doing, and I say I'm going to visit my mother. Everyone knows and ask how's your mother. To lose Mum is unthinkable. I don't like to think of losing her. I know it's going to happen eventually, but Mum wants to talk about this. I say I don't want to take about that. Yesterday I was just starting her wash and she said will you come to my funeral. I woke up to her saying will you come to my funeral. I said what makes you think I wouldn't. She's a character. I don't like to talk of that sort of thing. I think it is bad form. So I told the doctor.

Lifestyle

On the weekends I might come three or four times a day. I'll do breakfast, might have to go off somewhere for half an hour or an hour or so, everything has to be done in the area, then I come back to Mum and she says where have you been, you've been gone a long time. I get told off. And then I do lunch, then there's Dad, or I might try and have lunch with Dad after I give Mum her lunch, because then I know that the only time he gets any company at meals is when I have it with him on a Saturday or Sunday. Isn't that awful? So I make that effort and we go out and have a meal and then you don't have to worry about tea at night. And the pattern lately is that we do that and I get back to the nursing home so I'm there for hours. I maybe leave there about 8:15pm. It's just a pattern. Everything revolves around there. They've got a little TV and I've got a tape recorder in case I want to tape Mum for anything. If she's able. I've done her life story in a little book. So that's there for posterity. For my memories, too. Mum's got a very good memory of lots of things. It's just incredible. Even my friends meet me there at times, and I've had insurance people, and land agents drop in things to me there. I tell them I'll be there and ask them to call in there. I meet them outside, so it really has become like another home. I bought another place recently that's closer so everything revolves around there.

* * *

INTERVIEW FINDINGS FROM OPEN ENDED QUESTIONS & COMMENTS

1. What was your reaction when your partner/child/significant other had his/her illness/accident?

Of the 44 participants, 42 answered this question. The majority of the participants, 23 (55%), answered shock and/or trauma as the first reaction. Denial and disbelief was the next common reaction being identified by 11 (26%) people. There were 10 (24%) carers who experienced sadness and despair, 8 (19%) carers who experienced anxiety, 7 (17%) acceptance and flexibility, and 6 (14%) devastation, after learning that their loved one had acquired the illness or injury.

2. Can you describe how you feel watching your child/partner/significant other recover from/progress with disabilities? (both for improvement and degenerative process).

From 41 people, there were 15 (37%) who described their feelings as sadness and or despair watching their care recipients degenerate or recover from disabilities. Twelve (29%) people felt grief and 10 (24%) experienced powerlessness or helplessness. Acceptance was 7 (17%) participants' response, with 6 (15%) describing their feelings as denial, and a further 6 (15%) of joy and elation.

3. What impact have those disabilities had on you family lifestyle?

The majority of 39 carers, 10 (26%), said that the impact of their relatives disabilities led to family reorganisation. Detachment or growing apart, and love or growing together were themes emerging from the same number of respondents, 9 each (23%). There were 8 (21%) respondents who expressed the impact of the disabilities on family life as creating 'sadness' and or 'despair', 'exhaustion' and or 'stress', and 'devastation'.

4. Has telling/not telling people about your relative/child/partner (condition) been an issue for you?

All 44 participants answered this question and for 11 (25%) telling people about their relatives disability was an issue for them. Six people (14%) answered YES and NO. Many did not find telling people about their loved ones disabilities an issue.

5. What impact have your relative's disabilities had on your relationship?

Of 37 respondents, 15 (41%) reported that the disabilities of their relatives increased the love or togetherness of their relationships. Themes of exhaustion or stress was the next highest response expressed by 9 (24%) participants. Sadness or despair was the feeling reported by 7 (19%) people, and adaptation, flexibility and acceptance, as well as feeling trapped were reported by 6 (16%) people each.

6. What strategies, if any, have you developed to deal with your relative's disabilities?

The main themes that emerged from dealing with the 41 participants' relatives suffering from disabilities, accounting for 15 (37%) people, were adaptation, flexibility, and acceptance. Other themes such as love and growing together was from 6 (15%) people, family organisation, keeping busy and hobbies, and themes of loneliness and isolation, with 5 (12%) responses each.

7. How have you learned/ not learned to deal with changes in your life?

Carers responded to changes in their lives most commonly with adaptation, acceptance and flexibility, with 14 (34%) carers exhibiting these themes from a total of 41. Positive thinking and confidence was the next most frequent theme of 7 (17%) people, followed by 6 (15%) with patience, and 4 (10%) for exhaustion and stress, and frustration.

8. Was it difficult to find the right approach to helping your child/partner/relative deal with disabilities?

There was no outstanding theme that distinguished itself amongst the 40 carers in regard to finding the right approach to help their relatives with their disabilities. Adaptation, acceptance and flexibility accounted for 6 (15%), as did themes of positive thinking and confidence, powerlessness and helplessness, and themes of feeling trapped. Yet, love and growing together seemed to be the most common theme, with 7 (18%) carers transcripts identifying it.

9. Has your partner/child/loved ones need to maintain some sense of independence been an issue for you?

From the 40 people who gave answers, 45% carers found their relatives' need for independence has been an issue for them. About 53% found it was not an issue and 3% answered YES and NO. The answers vary according to the severity of the disability.

10. If you could turn the clock back to the time of the accident/diagnosis, would you have done things differently? (ie. if you had the chance to relive your life again).

From the 40 participants who answered this question, 15 (38%) would have done things differently if they had the choice again at the time of the accident or diagnosis. There were 21 (53%) who would not and 4 (10%) were undecided answering YES and NO. Slightly more than half of carers were satisfied with the decisions they had made.

11. How difficult is it for you to envisage the future in 6 months'/one years' time?

There were 38 participants who answered this question. Among them, many found it difficult to envisage the immediate future, 6 months' to a years' time, whilst 39% (15) did not.

Excerpt taken from Shackleton, M.G. (1998), To Care or Not To Care- The Effect of Caring On Health. Community Rehabilitation following Acquired Brain Injury. Vol. 2, No.1: 41-54.

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CONCLUSION

Many relatives felt so chaotic and disorganized in the aftermath of brain injury that few took up the offer of help. The majority of families interviewed viewed themselves as coping, albeit under stressful or intolerable conditions.

As a health professionals I believe relatives need a counsellor because carers have to make significant adjustments to their lives. If change is not sought or desired, then the carer may not believe that they need to take up the offer of help. I have found that just being a pair of ears to relatives sometimes is all they want. I had been told by many that they need a sounding board, not advice or solutions. Active listening skills can be more useful than therapy when relatives perceive themselves as not in need of help. It may make a large difference in how relatives cope.

The definition of counselling has changed over time. It can be carried out by trained and untrained people. For that reason carers may interpret counselling as advice, advocacy, and practical assistance such as legal and financial, talking therapy and many other forms of help. In addition, counselling can be carried out by the untrained as well as the trained, making it even more difficult to find out how effective counselling is in helping relatives adjust to the aftermath of head injury.

It could be that informal counsellors often place too much emphasis on problem solving rather than empowerment. Many relatives did not want to appear as not coping or in need of assistance because dominant male culture in Australia does not encourage expression of weakness, emotionality or psychoanalysis. To be seen in tears talking to a social worker or psychologist is often not advantageous to a person's pride or perception of his/her control of a post brain injury family environment.

We need to reassess our helping strategy if we are unable to access this hard to reach group of barely coping relatives. It is clear that we cannot see their coping mechanism as pathological, no matter how "abnormal". Many relatives do not believe that there is such a thing as "pathological grief", to use such terminology is therefore not helpful.

We need to utilize the family's resilience and resourcefulness in order to enhance their ability to cope. Psycho-social education or self help groups would be more normalizing than therapy or personality changing groups as they would be seen as less threatening, and more humane. The concept that counselling is a magical wand that can cure and fix all ailments suffered by relatives is clearly not working or acceptable.

Personal resources such as sense of humour and resilience help in reducing the effects of stress. The effect of stress on well being will be reduced in caregivers who draw on their own resources and strengths at this challenging time.

Health organisations need to find the role that personal resources, including social networks, play in reducing the effects of stress so that support can be planned and delivered to alleviate carer burden. In general, services for relatives-carers are much better now than eight to ten years ago.

Relatives' stories tell us that there are positive effects from brain injury, it is not all negative. We can all learn to live with brain injury, no matter how serious the disability.

It is hoped that timely and appropriate interventions such as grief counselling may overcome carers' reluctance in accepting assistance in the future. This is important if we want families to survive unscathed after trauma and tragedy as well as to become a fully participating asset to the patient.

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ADVICE TO PROFESSIONALS

What do family carers want?

Emotional support

Learn the effects of head injury

Learn about community resources

To have questions answered honestly

Help in dealing with physiological, psychosociocultural and spiritual stressors

More time for self outside the house

Support groups and friends to assist with housekeeping tasks

Respite care

Learn methods to adjust to memory loss

Learn methods to adjust to behavioral changes

Obtain information about financial assistance

Talk about feelings

Feel there is hope

Increase in communication skills

Reassurance that the best possible medical care is being given to the patient

For those in institutions, to be called at home about the patients' condition

To have complete information on patient's problems in thinking

To have explanations from professionals given in understandable terms

To have a professional to turn to for advice or services when the patient needs help

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HELPING THE BEREAVED

What will help!

Spend time and really listen

Let them know that what they are experiencing is normal.

Encourage expressions of feelings in their own way.

Accept their behaviour - crying, screaming, being quiet, laughing.

Empathise - empathy is the basis of a helping relationship.

Try to understand and accept this person.

Everyone is different.

Allow expressions of anger, guilt and blame. Reflect on the meaning of their words. Let them know you understand what they are saying.

Indicate that grief takes time. There is no quick fix.

Maintain contact personally or by telephone.

Visits need not be long

Give hugs where appropriate.

Talk about the lost person.

Include children in family grieving.

National Association for Loss and Grief (NSW). Adapted with permission from Clark, Sheila: 'After suicide: help for the bereaved'.

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HOW TO EMPOWER SERVICE USERS

You enable them through:

•Providing information, support and resources

•Listening to them.

•Taking responsibilities toward them seriously.

•Loosening and sharing your power with them.

•Supporting people in their decisions.

•Giving people time to readjust and develop.

•Respecting others as individuals, with individual

Needs, wants, rights and opinions not just part of a client group, a case or cluster of symptoms?

•Involving and consulting the person in all matters which will affect them.

•Inviting criticism.

•Making access to people, files, resources and information easy.

•Using plain English not jargon.

Redesigning any practices which could be tokenistic or patronising.

Helpful hints

•Inform relatives that disability is not rare or shameful

•Inform relatives as much and as soon as possible about the condition's cause, course and outcome

•Help free relatives from self blame by explaining that they alone, could not have caused the condition to occur

•Offer professional help which is effective, e.g. which is recommended by experts and evidence based

•Assist relatives to contact a self help group for the specific disability

•Both professionals and relatives need to accept that relatives need training to be good carers

•Get to understand the nature of the pressures to which carers are subject to

•Pay attention to the needs of other members of the family

•Help relatives to understand that spending massive amounts of time with the person who has a disability can make matters worse for them and for members of their family

•Help relatives maintain and establish friendships, activities and hobbies, particularly those that take them outside the home

•Help relatives to set sights on maximum appropriate independence for their injured relatives AND FOR THEMSELVES

•Understand that it is the ability to change, to look at things differently, that distinguishes relatives who will cope, from those who will not

•Help relatives to understand that unlimited, unconditional, self-sacrifice on behalf of someone with a disability is not effective caring

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Definition of Terms

Carer:

A non-salaried person providing physical/emotional care to a relative, friend who suffers from a disability at a regular minimal contact of once a month on average, in an institution or community setting. They do not have to be residing with the person, and paid professional carers are excluded. Cares can be recipients of social security payments.

"A person who is not employed to provide the care in question by anybody in the exercise of its function under any enactment. Normally, this will be a person who is looking after another adult in the home who is frail, ill and/or mentally or physically disabled, and where the dependency relationship 'exceeds that implicit in normal dependent relationships' between family members". (1991, Department of Social Services, Victoria)

Narrative:

The term narrative implies listening to and telling or retelling stories about people and the problems in their lives. The bridges of meaning we build with others help healing developments flourish instead of wither and be forgotten. Language can shape events into narratives of hope. (Excerpted from narrativeapproaches.com "Ten second introduction to narrative therapy)

Acquired Brain Injury (ABI):

Brain injury that was acquired as a result of trauma through accident or violence, or through non-traumatic causes such as strokes, substance abuse, medical misadventure or disease. Its onset can be sudden or gradual [From. Gething, L. (1997), From Person to Person: A guide for professionals working with people with disabilities. 3rd Edition. MacLennan & Pretty, Sydney.]

Denial:

Is a coping strategy that is evident at certain stages in both healthy individuals and ill patients. This form of defence continues to be used in everyday life. Recently a study demonstrated that persistent denial is related to poor psycho-social adjustment at two and a half years post brain injury, suggesting that denial is an adequate coping strategy in the short term (Malia 1997).

Thematic Analysis:

Is a coherent way of organising or reading some interview material in relation to specific research questions. These analyses are organised under thematic headings in ways that attempt to do justice both to the elements of the research question and to the preoccupations of the interviewees.

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REFERENCES

Bright, R. (1996), Grief and Powerlessness: Helping people gain control of their lives. Jessica Kingsley Publishers, London.

M. Clark, Steinberg, M. & Bischoff, N. (1997), "Patient readiness for return to home: Discord between expectations and reality". Australian Occupational Therapy Journal, 44: 132-141.

Cohen, S. & Willis, T. A. (1985), Stress social support and the buffering hypothesis. Psychological Bulletin, 98: 310-357.

Foy, E. (1997), "Parental grieving of childhood disability: A rural perspective". Australian Social Work, 50 (1): 39-44.

Gething, L. (1997), From Person to Person: A guide for professionals working with people with disabilities. 3rd Edition. MacLennan & Pretty, Sydney.

Kilner, D. & Maddock, A. (1997) unpublished paper. RDNS Listen to Carers. HACC funded project for the Royal District Nursing Service of South Australia & Carers Association of South Australia.

Leidy, N.K. (1994), Operationalizing Maslow's theory: Development and testing of the basic need satisfaction inventory. Issues in Mental Health Nursing, 15: 277-295.

Maddock, A. (1997), unpublished paper. Why carers' choose to use services. Paper for RDNS Forum, 10th November 1997.

Malia, K. (1997), "Insight after brain injury: What does it mean?" The Journal of Cognitive Rehabilitation, May/June.

Nolan, M.R., Keady, J. & Grant, G. (1995), "CAMI: A basis for assessment and support with family carers". British Journal of Nursing, July 27th – August 9th (14): 822-826.

Orchison, R. (1997), "Why do I do what I do" in Challenging Disability Practices: Talking about issues of disability. Dulwich Centre Newsletter, (4): 4-7.

Schofield, H., Bozic, S., Herrman, H. & Singh, B. (1996), Family carers: Some impediments of effective policy and service development. Australian Journal of Social Issues, May, 31 (2): 157-172.

Shackleton, M.G. (1998), To Care or Not To Care- The Effect of Caring On Health. Community Rehabilitation following Acquired Brain Injury. Vol 2, No.1:41-54.

Tolman, R. & Rose, S.D. (1990), "Teaching clients to cope with stress: the effectiveness of structure group stress management training". Journal of Social Service Research, 13 (20): 45-66.

Wortman, C.B. & Silver, R.C. (1989), The myths of coping with loss. Journal of Personality & Social Psychology, June, 56 (3): 349-57.

Young, R.F. & Kahana, E. (1989), "Specifying caregiver outcomes: Gender and relationship aspects of caregiving strain". The Gerontologist, 29 (5): 660-666.

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