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#### The Living Cage  
Life beyond stroke

by Per Løvhaug

Copyright © 2018 Per Løvhaug

Smashwords Edition

### Smashwords Edition, License Notes

Thank you for downloading this e-book. You are welcome to share it with your friends. This book may be reproduced, copied and distributed for non-commercial purposes, provided the book remains in its complete original form.

## Table of Contents

Preface

A Nightmare

The new everyman disease

Dream replaces reality

The wallet that disappeared

Home in dreams

The intensive care ward

A psychedelic dream

Birdsong was alarm

Crowded at night

Are you comfortable?

From passive to active

The brass wire in my face

Food through gastric feeding tube

Kongsgårdheimen

Trouble upon trouble

The dreams change character

A special day

We do adult education

Hemorrhage number two

An accessible home

A uridome of bother

Time is relative

Visits for joy and wonder

Alerting our municipality

Left to one's own resources

Just as confused

A need for psychiatric help?

Individual Plan

The municipality administration–helper or opponent?

Reorganization

User-directed assistance (BPA)

Hard training

Lonesome at the Day Hospital

"The elderly wave"

A quiet mass murder

Good helpers

Missing the hospital

Look up and onward

Epilogue

A note on the author

## Preface

A cerebral stroke strikes the patient directly, but those who are nearest, particularly a spouse, also have their lives changed. And around the nearest circle are the helpers – the health professionals. So there is always the three P´s: patient, persons near, and personnel. Each of these needs to find his/her place on a scale of emotions, from despair at one end to hope at the other. It is not uncommon for emotions to swing between these outer points.

The remedy is treatment, in the acute phase, and it is vitally important that it begin as soon as possible and that it is effective. There follows the intermediate period of care and gradual mobilization, and then the extended phase of therapy and rehabilitation. This final phase continues without end, in part because one can always improve, and in part to assure that achievements are not lost. The goal is the mastering of the disability and of life itself. Mastering is not the perfect "as I was before". Mastering is in persevering, in continued training and in keeping hope alive: We will not ever give up, and not even then.

It is critical that the three-P´s understand what has happened, and they need to understand it with both reason and feelings. To achieve this we need to hear the stories of those affected, namely the patients and persons near them. Per Løvhaug is a journalist and writer. He manages to put words to his experience and emotions, so we can learn from him. He explains how it feels in a manner that we grasp and are ourselves gripped by the telling. He shows us how emotions swing throughout the scale, but still lead towards hope for a livable life. He shows us what love means when catastrophe strikes.

I hope that many will read this little book and be gripped by it as I was. There is hope in the midst of despair, and we must grasp that hope. Gallows humor is often good help: Seize the day, or you can call it a night!

Peter F. Hjort

Professor Emeritus, University of Tromsø

## A Nightmare

Imagine that you awaken in your bed, unable to move any part of your body. Your arms lie slack and heavy by your sides, your legs won´t budge. You have lost speech, and your hearing is reduced to a deep rumbling. Through blurry eyes, you look out into a foreign world where everything is double.

You realize that you have lost control of your bodily functions, and you lie there a wreck, robbed of all dignity. You want to close your eyes and glide back into a compassionate sleep, only to discover that nightmares await you there that are worse even than those in what we call reality.

Not even unconsciousness can appease your painful awareness.

The cage was made of finger-thick, smooth bars, woven in an intricate pattern. The bars were rust-red and could have been of iron, but they glided in and out between themselves with the greatest suppleness. They were warm, but they gave no sound.

The cage was alive.

The naked man´s body inside the cage twisted in pain. Sweat ran from it, but no sound escaped his distorted mouth. The bars enveloped his body as he strained to get loose. The more he struggled, the harder the grip was tightened. Not before he resigned himself and relaxed did the cage´s grasp soften.

Slowly and watchfully the bars slid from each other, only to tighten at the least movement. Only when his body had completely submitted did the cage ease its hold.

This was one of many nightmares, as I lay unconscious in the intensive care ward of Flekkefjord Hospital. I had been admitted with cerebral stroke and though my nightmares varied they each reflected my condition: a naked, vulnerable man-person abandoned to forces outside his control, unable to move. The feeling of powerlessness was unbounded, and despair over my paralysis was bottomless.

In one form or another this theme revisited me repeatedly through the three weeks I lay unconscious. But I was not completely senseless. I had a rich dream life that also incorporated parts of what was going on around me. As I began to return to myself the dreams became more nuanced and colored by my surroundings.

It was the third of March, 2007 at eight o´clock in the evening that the stroke hit me, ruthlessly and painlessly. We were to eat dinner at the home of friends in Spind, and were about to have an aperitif of white wine before going to the table. Then it happened. I perceived two blood red stripes that ran parallel down a grey-white glass wall and disappeared into my body. For a moment I tried to follow the stripes with my fingers, without real success.

Berit, our hostess, asked me whether I was frightened, and I said yes. That was the last thing I said for many weeks. In truth, I was more amazed than afraid and observed almost amused the way my left leg began to kick uncontrollably in all directions. I tried to steady it with my left hand, but the hand wouldn´t listen. You have had a stroke, I remember thinking.

In the distance, I heard our host, Stephen, say decisively that we needed to call an ambulance. The next I knew two red-clothed men carried me on a stretcher and put me into the ambulance. I heard my wife Astrid say, distantly, "I am coming with you."

Six weeks would pass before I found out where I had been taken.

Astrid told later how the ambulance driver asked whether they should drive to Kristiansand or to Flekkefjord, as Spind, where Berit and Stephen lived, lay fairly equidistant from these two hospitals. She inquired as to what would be best for me, and the driver responded that if it was a blood clot in the brain, seconds could matter.

"So drive to Flekkefjord," said Astrid.

In Flekkefjord everything was laid ready when the ambulance arrived. Within twenty minutes it was clear that the problem was a cerebral hemorrhage. It had occurred in the lower brain stem at the juncture with the spine, where the nerve bands are so dense that operating was not an option. I could either die or be paralyzed from the neck down by the least collateral damage.

## The new everyman disease

Cerebral stroke is often called the new everyman disease. 16,000 Norwegians are given that diagnosis each year, and the number is expected to rise to 25,000 in the next twelve to fourteen years. Four out of five of us experience a blood clot to the brain, and the patients are increasingly younger. It is crucial that treatment begin immediately, and that rehabilitation begin as early as possible. This is decisive if the patient is to be brought back into employment, or in the least to a worthwhile life. There are examples of people coming back to their jobs and working through to retirement age. Some have perhaps had to work on partial leave, but have nevertheless saved society huge expenses for their care.

The rise in the number of strokes corresponds also with the aging of our society. This puts large demands on the capacities of municipalities to provide rehabilitation. It is unacceptable that patients released from hospitals should simply go home without assistance for rehabilitation. Without help, stroke victims can soon end up in nursing homes. This result is prohibitively expensive for municipalities.

Flekkefjord Hospital is the western-most general hospital Southern and Eastern Norway Regional Health Authority. It serves the western part of the County of Vest-Agder and two populous municipalities in Rogaland County. The hospital has a medical ward with 30 beds, of which four or five are reserved for acute treatment and rehabilitation of stroke patients. In addition, there is the Farsund Geriatric Day Hospital, an administratively independent unit under medical supervision from Flekkefjord. The hospital in Flekkefjord also has a surgical ward with 26 beds and a maternity ward with 12.

Not least in importance for the district is the emergency ward. This is often a patient´s first contact with the hospital. The emergency ward employs thirteen nurses and can call on specialists from all fields of medicine in the hospital. Finally, there is the intensive care unit with 16 beds.

The hospital opened in 1942 and is – both in location and esteem - the virtual heart of the city. It is built on a cliff in the center of town, as to remind one of the Potala monasteries in Tibet´s capital Lhasa. If it isn´t as symmetrically constructed, like the Potala it appears as if the hospital buildings have grown out of the rock they are built on.

## Dream replaces reality

I dreamed I was in the hospital in Kristiansand. There I was received by a young Swedish doctor who installed me in a room full of mirrors and glass cabinets. He let me keep my clothes on, and gave me some hope of an early dismissal.

I was longing for a cup of coffee, but I would have to fetch one myself in the cafeteria, I was told. How, he did not say. There was something terribly wrong with my legs. I found an alter, a sort of tall ambulator to support one in walking, and somehow managed to hoist myself onto it. But I couldn´t get out to the cafeteria, where the coffee machine was.

There was a young female physician, and she had not the least confidence in the Swedish doctor. He is HIV positive, she confided, and now he was trying to sneak blood from healthy patients for himself. He hoped this would cure him.

I told her that he had gotten a little blood from me for the promise of a free ride home in the medical helicopter.

"I will give you a free ride home", answered the young female doctor angrily, and wrote something on a scrap of paper.

At that moment I heard the sound of rotor blades from a helicopter landing behind the hospital. Instantly I found myself outside in the room where people were waiting for the helicopter. One by one those who were traveling departed, while I was left lying alone. I tried to cry for help, but no sound came. In the next room I could hear the ambulance team knocking around, but the hope that they would find me gradually faded. The anxiety of loneliness gripped me. Far off I heard the doors being closed and the helicopter fading in the darkness. Then I understood that all was lost.

Speech was gone and mobility had vanished.

It is said that rehabilitation is more than learning to walk again. It is a matter primarily of regaining dignity. You eventually discover that you have lost the capacity to communicate and to move about. The dignity which you have associated with your position in your career or social life is now meaningless. It vanishes as you sense the stink of urine and defecation rising from the bedclothes.

From deep in my subconscious arose a sentence I had heard somewhere: Love is a lonely thing. The phrase seemed more and more meaningless the further down I felt myself to be. Before me was a door into a dark, empty room, and over the door was written in gold letters: Death is the loneliest. It struck me that the one who had written that love is a lonely thing must have been a young person who was suffering from love rejected. True loneliness lay in the absence of love, absence of feelings.

At the same time, the empty room tempted with the peace and absolute rest it offered. When the door closed, everything would be shut out, also suffering, defeat, loss of dignity. The open door lured me, but then in the dream, I saw Astrid sitting among some solemn men. It was obvious they sat gathered around my bed. Astrid flung her hand out towards me, and the door closed suddenly on its own. That was when I realized how much I love her, and that death withdraws when it meets two-someness or several-someness.

That was not the only time I was lured by that open door. But from this point, I turned to an exploration of the hospital where in my dream I had been admitted.

## The wallet that disappeared

I dreamed that the hospital ward was stretched in its length, and at the end of the corridor sat the Swedish doctor surrounded by a court of nurses. They listened with respectful expressions to everything he said, clearly in boundless admiration. I was very annoyed that Astrid climbed over the back of a chair to get closer where she could better hear the Swede. It was me who needed her attention now.

In my new room, I found out that the closet with my clothes didn´t have a back wall. Anyone could get in from behind and take what they pleased. I was most concerned for my wallet, where there were both money and credit cards. I wanted to make Astrid aware of my trivial worries. She just looked at me wonderingly, without seeming to follow a word of what I was trying to say. I formed the sentences as carefully as possible, convinced they were as lucid as those neon headline signs flashed on buildings that used to be so popular with the major European newspapers.

In the next instant, I was in a deep sleep, where this business with the wallet turned into a nightmare. The wallet had become the freedom I sought, while the lack of communication was the cage that held me. As much as I might try, I gained nothing. Not until I let all thoughts of the wallet go could I sleep in peace.

I continued the exploration of the hospital and its surroundings. The others were skiing while I was carried on a pair of planks. After crossing a large field, everyone went to rest in a big rockslide. From the rocks, we could see back up the field, which ended at a ridge. There lay our home. Nearby lay Torp farm on Lista, which was now taken over by Sigurd. So close, yet so far away was the object of my desires and dreams.

One by one the fittest began to go in the direction of our house. Astrid was helped to come along, but no one seemed to notice me. Neither could I make anyone aware of my existence, lying there alone until the darkness began to fall. Then, for the first time, I became aware of someone taking care of me.

"Of course you are coming with us", said one of the white-clothed women.

After that, it was always a woman in white that saved me, if even at the last moment.

For years I have trained myself to remember my dreams. In the beginning, I tried to interpret them as well, but I only got the answer I wanted. You might ask why I am interpreting the dreams from the hospital, but it is more to find a connection between the various sequences. The dreams I had at the hospital were naturally as disconnected as most dreams. What can seem like a full evening´s performance was probably but a sequence of some seconds´ duration. I slept a lot and must have dreamed much of the time.

I remember only two waking moments from the intensive care ward. Both times members of my family were preparing to leave for the day. As they bid me goodbye, they held their glance on something above my head. It must have been the measures for my heart rate and oxygen intake that flickered over me continually. It annoyed me but lies so close to reality that it was unlikely a dream. It must have happened just before I was transferred to rehabilitation.

Meanwhile, there was a marked redirection in my dream world. Now I had landed in a kind of convalescent home in the highlands, though in reality, I was still in the hospital. Outside the windows were tall trees in the hills, but the only sound we heard was the flapping of the helicopter´s rotor blades, coming and going. I tried to catch a ride home again and again, but each time I was forgotten. Even though the pilot was informed that I was to come, there was no one to help me over that decisive small distance from the bed to the helicopter. I was lame and helpless.

## Home – in dreams

I don´t know how, but by some means in my dreams, I had managed to come home. But things were different there now; all the rooms had been rebuilt. White tiles covered the floors, and the house had gained a second floor. There were doors and galleries so that one could look down into the parlor, and the ceiling was covered with grating that hid a ventilation system. It looked suspiciously like the hospital, and when I suggested this, Astrid and Sigurd looked at each other with secretive smiles. I suspected that they had made an arrangement with the hospital to put the house at its disposal as a convalescent home.

On top of the hill to the south of our home - Astrid´s and my retirement cottage - stood another building, and that appeared to be a new institution. I imagined that the National Health Association owned this building and the hospital where I was a patient. Now they had also rented our house to use. There was snow outside and people were skiing down the hill from the building to the south and past our house.

Suddenly a group of neighbors made an entry to say hello to me. I found this very pleasant and wished them all welcome. They streamed in from both west and east. I had nothing to offer them, but they brought five-liter plastic containers full of a colorless liquid that they drank quite contently. The pitch rose quickly, and someone began playing country music. Abruptly the doors to the garden flew open, and in stormed a horse with two riders. The horse was iron-shod so that the tiles shattered, and bits flew through the air like snowflakes. I wanted to try to stop the horse, but I couldn´t move. Again, I was chained there where I lay, and couldn´t escort out either the guests or the horse tramping around on the second floor.

So far that dream. What happened to the horse and all the visitors, I didn´t get answered, because next thing the family and I had gone to rest upstairs. A noisy group of kids from the house to the south of us had seated themselves around a piano down in the living room. They began to sing songs, obviously in the hope of driving us out. We answered by singing folk songs, and it became a competition for who could hold out longest. We knew some old ballads with unbelievably many verses and it ended with the neighbor kids leaving in the early morning, completely exhausted.

The next time I dreamed of home, guests came from near and far to say hello. Among them was my mother, Karen, over 90 years old but in good health. She still lives in Trøndelag, not far from where I grew up. In the dream, she fell asleep in my arms. After a while, I discovered that she was cold and stiff. The apparition was so like my mother, and it took a long time before I realized that it was made of plastic.

Then I understood that my mother really wanted to come to me, but couldn´t. She had therefore sent an image of herself. The case was different with my sister and her daughter, from Asker, both trained nurses. They saw to it that I lay comfortably and sat well, and did all that was right for me. But when it came to the unavoidable, defecation, they were long gone.

It was not only close relatives who came to visit, many people had traveled all the way from my birthplace. I had known their grandparents, but now I had to recollect the names of their offspring. It struck me that family lineage in Trøndelag must still mean a lot when the offspring of long-dead neighbors would travel so far to make a sick call.

Who had cleaned up the excrement and given me new clothes, I never found out, as the dream was broken off before I got there.

Now the time had come to send invitations to the wake. It was to be jolly and to take place while I was still alive. A friend, Inga, became so enthusiastic about the idea that she started at once to organize a choir and musicians to practice their performance for the funeral. A little peeved, I asked her whether she couldn´t wait until I was dead before arranging the funeral ceremony, but she wouldn´t hear of it. Instead, she ordered a bus for the choir so that they could practice together with the musicians from Mandal.

While Inga was off in the night to rehearse merry songs, guests began to pile in. From Trøndelag there came aunts and uncles, cousins, old neighbors and their children and grandchildren. And from Sørlandet, old friends and colleagues. There wasn´t room enough in our house, so the gathering was to be held down in the meadow. Where they found food and drink wasn´t clear to me, but the guests ate and drank and enjoyed themselves splendidly, I was told. They sat in groups about the meadow clearly having a fine time, though I didn´t manage to greet all of them. Alas, I couldn´t move. Nonetheless, I did join my sister and brother-in-law when they prepared to leave.

At the barracks-like building, we stood and listened to a pretty jazz song wafting out the window. We couldn´t help but look in to see who was singing so lovely. It turned out to be a cousin, Åshild, who was the master of that song. I don´t remember any specific songs, but they were old standards that I knew well, though performed in a new, exciting mode. And that girl we had known for fifty years without recognizing her talents! We looked at each other, probably sharing the same thought: How little we know of each other.

We separated there outside the window, and we agreed that we would have to do this again.

How I came to be there, I don´t know, but I was "awakened" in a bed at the hospital by a bird singing crazily. I lay awhile thinking about which bird it could be, but I had to give that up. Nothing was in tune with the season of the year. There were high windows towards the backyard, but the big trees were naked. Outside it was cold and clear-skied. I drifted into sleep again, but couldn´t help worrying about my wallet since anyone could get into the closet from the back.

One way or another I must have tried to signal to my surroundings that I wanted to say something, this while I was still in the hospital´s intensive ward. From the speech therapist, Astrid got an alphabet board with the letters laid out in neat rows and lines. I tried to point at the letters but missed the whole board. Instead, Astrid began to point to lines and rows, and I was to nod if the letter was in that row. The problem was that it was difficult to signal double letters and spaces between words. Whenever Astrid thought she had figured out what word I was aiming at, she would begin pointing to letters she expected to hear in the next word. Thus we were led completely astray and ended in a wordless quarrel, and in anger I sought sleep again.

The alphabet board followed with me to the rehabilitation ward, and with it likewise the unsolved problem.

I slept a lot and seemed to dream most of the time. Now it was our home that drew me again. I knew it was out there somewhere but not how to get to it. Helicopter transport was clearly the best solution. I managed to get the proper documents in order and made everything ready for departure. When I showed these to the nurse who organized transport, he shook his head and said that I was too sick to be able to go home now. When I protested, he just said that I would have to get there on my own. Naturally, I couldn´t do that, so this attempt also was in vain.

On my next attempt, I succeeded in persuading the nurse to take my papers himself to the pilot, who said that I could just come along. I was trundled in my bed past the barriers and into the helicopter. Several wheelchairs were already there, and the two stretcher beds were occupied. I was wheeled out again as my bed took too much space. It blocked important instruments onboard. Once again I had to listen to the helicopter dissolving into the night.

## The intensive care ward

I was in the intensive care ward for almost three weeks. There they got my heart beating regularly again and my breathing functioning. Large amounts of mucus that I couldn´t cough up were sucked up by means of an apparatus. It was a struggle for life or death.

In all, it was three times that I turned my back on that empty room, although the open door tempted. It was as though it invited to peace and quiet. But each time I would see someone dear to me sitting by my bed. That was enough for me to turn my back on the door.

One afternoon, several months later, I was sitting in my wheelchair and enjoying the late sun together with Astrid outside the main entrance to Flekkefjord Hospital when along came a group of women. Astrid immediately grabbed for her handkerchief. Some of the women also began to weep and came over to hug me. There I was being caressed by women I didn´t remember seeing before. I didn´t understand a thing before my wife later explained that these were half of the intensive ward staff on their way to a meeting. They were so glad to see me alive again and beginning to function.

The second wake in my dream world must have taken place while I was still sure that I was going to die. This one was no less grandiose than the first. My brother-in-law had rented a place so that we could be indoors. There was a plate of stew for each, but as usual, there was a problem with the drinks. I had been brought there by ambulance, so this time I was independent of a helicopter.

Here they all came, both my relatives from the north and friends from Oslo and the south. I don´t remember much from the party, but it must have been tame compared to the first one. Some managed to organize rides home on their own, while others came to me and asked for help. What could I do, me who had been told that my ambulance would not be driving as far as I needed? Now I was again dependent on a helicopter. Thanks to my brother-in-law one had been secured, and it tried to land on the roof right above where I was sitting. This was a glass roof. I could see cracks spreading and bits of glass dropped like hail around us. I couldn´t move, but I got Johannes to climb up and tell the pilot. However, the damages were significant, and I began to think that I must owe my brother-in-law a lot of money for the whole unfortunate affair. When I brought this up long afterwards, my brother-in-law and my sister both looked at me and shook their heads. Like with so much else, this was just something I had dreamed.

For some reason, I was not carried back to the hospital, but to our small house up the hill. Here the house was full of people wanting to know how I was getting along. But I wanted them to leave as soon as possible, before they might smell that I had soiled myself. No one seemed to want to take responsibility for this when suddenly my daughter-in-law from Oslo stepped in. She came over wearing a plastic apron, and without saying a word rolled up her sleeves and tidied me up.

This impressed me greatly, as I knew that she looked skeptically upon nursing her father-in-law. Thus she rescued what small dignity I had left.

## A psychedelic dream

If I had had strange dreams in the intensive care ward, things would be no less peculiar when I moved to rehabilitation. To begin with, my attention was focused on my new room. Among other things, there were several cartons of televisions with pictures of TV screens printed on their sides. They were not unpacked yet, so the contents were new and shiny. Johannes was to help me unpack the equipment in the box by my bed, but he just stood there beside it, seemingly unaware of what he was to do. Almost imperceptibly he merged with the wallpaper and slipped into the box. This now lost its three-dimensional form and became a flat poster on the wall. Johannes appeared on the stylized screen and had himself become a paper figure. When he turned his head in profile his nose was hooked, large and clearly caricatured. He resembled a cartoon figure performing on a television screen. What was strange was that in contrast to all the other bizarre dreams I had had, this one was not silent. I could clearly hear Johannes´ voice as he served up news bulletins in a professional manner.

I waited for him to return, but it took ages and the dream unraveled. This psychedelic experience had form, color, and sound, and this continued as I took in other objects in the room. One of the cartons had a drawing of a computer on its side and was evidently useful in sundry ways. Gradually the drawing altered its form to a robot figure with Johannes´ unmistakable features. The whole room was alive, and the cartons shifted from being pictures back to being the articles they contained. It seemed as though Johannes had something to do with most of it.

Exhausted I swooned into a dreamless sleep.

Rehabilitation had actually started in the intensive care unit. The nurses had done their discreet, almost unnoticeable work; the physical therapist had labored with his exercises; the speech therapist had done what she could to find out what was left of my speech. I have no memory of any of this.

What I cannot forget are some dreams that lie in that gray zone between the two wards. Once we were in a large room not far from the hospital. In this room, we played bingo. Here the Swedish doctor performed for the last time, in an important role. He produced something he called HOB and put the nurses to work selling this stuff. It was liquid, colorless and came in white plastic containers. It had the effect on those who drank it of rendering them helpless to move a limb of their body, while at the same time appearing excited and in good humor. In this way, the Swede was able to acquire fresh blood, with no one taking offense.

When we were ready to leave the room where we had been watching a sort of bingo game, the others were assisted going out. I was left lying there and tried desperately to call for the helpers´ attention.

No one seemed to take notice of my existence.

## Birdsong was alarm

Chirp, chirp, chirp

Again I awoke with that piercing sound, but I could not discover where this bird chirping came from. I had agreed with myself that it must be a titmouse asserting its territory, but found that the noise was not coming from the big tree outside the window. It seemed instead that the noise came from the corridor, and in a while, I confirmed that it was the alarm clock ringing. Satisfied I went to sleep again.

While I slept around the clock for most of my time in the intensive unit, I now began to distinguish day from night. Astrid sat by my bed until late in the evening. After the speech therapist had struggled teaching me to speak, we continued the alphabet board game. Finally, I succeeded in spelling the word wallet. Excitedly, Astrid encouraged me to finish the sentence, but disappointment shown in her face as she realized that I just wanted to know what had become of the money and cards. She had hoped for something more soulful, maybe a declaration of love or something metaphysical. I had been at death´s door two or three times, and here I was absorbed by something so prosaic as my wallet.

That was not all that absorbed me. Time after time I had tried to find out where I was, but six weeks would pass before I got an answer. That did not happen until I had learned to speak again.

It came suddenly. I was never really without speech, but the organs that produce the sounds were paralyzed. All at once the words were flowing over my lips again. God, what an amazing experience! One cannot describe the power of the loss of speech. Having composed sentences ready that cannot be expressed is deeply discouraging. One has opinions about things, but no one hears what you want to say! To be unable to comment on what others said regarding my fate. Neither could I affirm when they decided something that was right for me. In short, I was a voiceless witness to decisions made on my behalf by other people.

Though it was still difficult to talk, the rediscovery of language led to lively conversations between Astrid and myself. Among other topics, there arose inevitably the question of why this had happened to me. We did not have an answer outside of my proposal that the Lord wished to teach me patience in this life. That was something I had always lacked, and why He had used such drastic means

## Crowded at night

I understood fairly soon that my room was a single. That is why I was so perplexed at how crowded it became at night. As soon as the lights were off, there began a padding about in the corners of the room behind me. I couldn´t tell what was going on until someone slung their feet up on the bars of my bedside. These were big military boots, iron soled and plugged with wooden pins. As a child, I had seen German soldiers equipped with this kind of boot. So it must have been a soldier sitting beside the bed. After a while, he climbed in, and it was impossible to free myself from the weight of his body. The soldier slept on top of me, almost suffocating me. After a while, I lost consciousness and woke to find the bed empty. One of my legs stuck out between the bars of the bed and had become wedged. After waiting a long time and calling for help, a night nurse finally came and freed me from the grip of the metal. By then I was dripping wet with sweat. In the first light of day, I saw the room was empty.

Something like this happened every night. As soon as it began to be dark there was padding about in the corners, and I had the feeling that the nurses were smuggling people into my room. Mostly soldiers, evidently from an exercise further north in the mountains. I got the idea that this was a charitable effort on the part of the nurses, for people who otherwise could not pay for their hospital stay. They only had minor injuries, like blisters and scratches.

The dream was so real to me that I asked the nurses where all of these people came from, but they just looked wonderingly at me. So I let the subject rest, as I began to understand that I was confusing dream with reality and that this might be such a case. Looking back, I can see this was the turning point in my convalescence, where I was moving from the dark unconscious to a consciousness in clearer daylight. But it also brought pain, both physical and psychological.

Still, I continued to dream about the room filling with illegal patients. Some sat on chairs over by the window. Others sat against the walls. Only the cheekiest crawled into my bed and caused me torment. I well remember the one who bent down over the bed and studied me closely. He stank of sour tobacco smoke. Later it has occurred to me that this was perhaps the night nurse who had snuck out for a smoke and then wanted to check that I slept well.

## Are you comfortable?

Are you comfortable? Or as they say in southern Norway, are you lying okay? was a question I came to hate. A reply from me that I would only be able to answer in an hour was met with a blank stare. Two hands fluffed the pillow vigorously, and were followed by: Are you lying better now?

That was when I understood how useless it was to nuance the answer. Time would tell.

I don´t know how many nights I had the feeling that the room was filled with people, and there were many times I got the feeling that someone crawled into my bed. I struggled and fought to get rid of these intruders, but always in vain. It often ended with my right leg sticking through the bars of the bed and calls for help until a night nurse came.

The nurses eventually brought a cover that they lay over the guardrails of the bed each night. That kept me from getting my legs entangled. Thus, the dreams became milder with time.

My two eldest grandchildren, Peter and Aslak, often appeared towards the end in these dreams. They were very popular among these uninvited guests in the hospital room. Each morning when the nurses came to throw them out, Peter and Aslak stood in danger of being thrown out with them. Then the two boys would transform themselves to brushes of woven gold thread, and these were left alone by the staff. When the parents came to fetch the boys, they changed imperceptibly into children again.

Many weeks would pass before I understood that all of this was a dream. I described then what I experienced in the nighttime to one of the nurses, and she listened patiently to me. She asked some questions and finished by saying: "Well, you are to understand, Per, that no one comes into this room at night except the night nurse."

Reluctantly I had to accept that the nurses were not trying to fool either the hospital or me by taking in free patients at night. In short, it was all a dream, though the suspicion that there lay some truth in it hung on for a long time.

## From passive to active

In the intensive care ward, I had been a passive recipient of everything, from help for the removal of phlegm to the ingestion of nourishment. Now I began to play an active role in the daily routines of the rehabilitation ward. In the beginning, my nourishment was taken intravenously, later through a tube via the nose and to the stomach. This gave me the sensation that a plastic chest of drawers had been operated into my head, and the food was shoved into the top drawer. Naturally, this had a connection with the stroke having paralyzed parts of the musculature in my head. And so I needed to see that the food passed through the right drawers and down to my stomach. This concern was related to the challenge of drinking. It took so little for the drink to go the wrong way and catch in my throat. There was also discomfort connected to these drawers in my head, especially in the throat.

The tube irritated both the nasal passages and the throat, something that had been ameliorated in the intensive unit by the placement of a gastric feeding tube directly into my stomach. Through that, I took nutrition, drink, and medicine for many weeks thereafter, even long after coming to the rehab unit.

That my sight was severely altered, I didn´t discover until some time had gone. It was not just that my hand was without steering when I tried to point at the letters Astrid held up for me. I actually saw them double. Nor did it help that my glasses had been lost. Both Astrid and the nurses searched for days without finding them.

It was around the same time that I realized I had tinnitus. Not just your pleasant rush of wind, but the sound of jet engines revving up. It was as though two Boing 737s stood behind the hospital, clear for takeoff. Doctor Rita sounded the alarm as soon as she heard this and wrote a referral to the Ear-Nose-Throat Clinic in Kristiansand. Even though it is within the same hospital, I was notified that I was not seen as a priority case, but that I could apply for the same services elsewhere, if I did not get an appointment at the Kristiansand clinic within six months. I took it in stride and thought I might as well wait, as I was soon turning seventy. Astrid was enraged, saying that no one should be told that they are not prioritized, regardless of age. It must certainly be possible to find a different language, at any rate, she stormed.

Life in the rehabilitation unit began to take a form that I felt myself to be a part of. The day began with the night nurses checking whether I was lying "okay". If anything needed changing, they did that. Then came the occupational therapist and a nurse to undertake the morning care. The occupational therapist, Laila, did things in ways that made me participate. I had to wring out the washcloth, for example, and wash my hands and face myself. The nurse did what she could to help me, while the occupational therapist challenged me to do what I could for myself. I soon learned to differentiate the different categories of staff from each other. There were those in white with short jackets on the one side, who were my friends and helpers. On the other side stood those with blue smocks. They were occupational and physical therapists. They were my opponents, who made life difficult for me. Above them stood those in the long, white coats and stethoscope, who gave orders about what was to be done. I understood in time that without those in blue there would be no progress, but without those in white life would be unbearable.

After the morning care, which in the beginning was carried out in bed, it was the physical therapist. By the time I was aware that we were doing therapy, she had been working for a long while with a person more unconscious than participatory, and her work consisted of keeping me alive and functioning. Now I began to take part in what was going on. In time I was hoisted out of bed in a "sail", a contraption that brought me over into a wheelchair. And in that, I was rolled to the physical therapist and her exercises. It was asserted that I was so motivated it actually motivated them in their work. I was unaware of this but had a vague feeling that things were moving forward. This also gave me an unrealistic hope that I would soon be back where I was before the stroke. On the other hand, no one was giving me a realistic picture of the situation. No one but I, myself, was creating these expectations, though when the unavoidable reaction came, Karen, the physiotherapist, said that she had expected it. But by now, she said, I had given them so much motivation that it was time those around me gave some payback. That gave me something to think about, a stimulus to not give up hope.

## The brass wire in my face

As consciousness awakened, so also woke vanity. Astrid had to assure me time after time that I had not gone crooked in the face, even though the left side was paralyzed. She assured me that everything was fairly unaltered, but I felt that my face was divided in two parts.

"But certainly it needs a surgeon?" I asked.

"A surgeon for what?" Astrid wanted to know.

"To remove the brass wire in my face that I am sewn up with," I answered.

Astrid laughed and fetched a mirror. She held it in front of me and asked me to point to the brass wire.

"I feel them," I answered, but avoided looking in the mirror.

Astrid patiently tried to explain that even though I had a sensation of scars, my face was unchanged. I have accepted this, but still feel scars in my face to this day.

The occupational therapist had her own devious devices. To begin with she operated with a stick game that I was to play. The object was to remove all the wooden pins that were set in holes on a wooden board. The rules were clear enough, the problem was to get the pins to stay on the board or the table beside it. When I got stuck, we usually counted the pins on the floor instead of those left in the holes. It was a win when the number of pins that had to be picked up from the floor went steadily down.

Another exercise whose purpose I could not understand at first was the folding of clothes. The occupational therapist, Laila with the long blond hair, brought in a basket of newly washed clothes that needed to be smoothed and folded. I accused her of exploiting me for her domestic chores and then offered to do it for others around the hospital. For pay, of course! Laila was in on the joke, as we had a light and humorous tone between us.

Playful also was the tone between myself and the rest of the personnel. There was overall a relaxed atmosphere among the staff of the rehabilitation ward. Calls and laughter sounded in the hallways. I accused especially the older nurses of being obsessed with pee and poop. I had come so far as to being brought out of bed to do my business on a commode chair, something that was a significant step in the recovery of my dignity.

It began with me remembering my childhood traumas. I was a bed wetter until I was eight or nine years old, and perceived this as something shameful and sick. Now I felt something similar. In my half-conscious state, I asked Astrid whether she could wash me and take away the mess and wet clothes. She went to the nurse on duty and asked whether that would be OK.

"No," answered the head nurse, Reidun. "Leave that to us. We are the professionals."

So Astrid did as she said and I never asked again.

In time it had become pleasant having enemas and clothes changed in bed, but the nurses advanced things in their fashion. Now I was hoisted out of my bed in a "sail" –a sling- and put down on the commode chair. I got the whole sheet around me, which hid both the toilet and me –only my red-flushed head sticking out. I managed with great effort to hold myself up, clinging to the armrests. And it came!

In a little while, the nurses' assistant Ane Marie came in to check on me. She peeked under the sheet and cried out: "Oh, Per, what a clever boy!" Then she pulled out the bedpan and held it up. "Look what you have managed!" She ran into the hallway with the bedpan. "Look, see what Per has done!"

So in this way she lifted some of my lost dignity, even if it stunk a little. That I wasn´t offended owes to my great sense of appreciation for Ane Marie and her manner of expression. Of her coming and going while I was on the toilet, for example, she would say "it´s just like on the big highways". She had altogether many pertinent phrases in her Americanized Kvinesdal dialect.

And then there was Sissel. She was particularly concerned that things were in order regarding my urine. When she pulled up the bottle with 150 ml yellow-brown liquid, she would crow with pleasure and give me a thumbs-up while holding the bottle to the light. In this way, Sissel confirmed that there was progress with the control of that bodily function as well.

It was the white-clothed nurses that gave life to the monotony of the days. They were always making things happen. First, it was the morning care. Then while the ergo-therapist used a brush to find where I still had feeling and where I was lame, the nurses did other things for me. They saw to it that I got clean clothes, and one of my own shirts. At night I had worn one of the hospital shirts, but now I had on something of my own, familiar clothes. They saw to it that my hair was combed and teeth brushed. They saw to it that I got food through my stomach valve, and was ready to meet a new workday.

## Food through gastric feeding tube

Despondent, I looked up at the colorful bag hanging from a hook over my bed. Nutrison was written on it in gay letters. From the bag, a thin plastic tube descended to the valve in my stomach. At the top was a glass bulb where one could see how many drops fell per minute. The glass showed the contents to be a brown-grey soup that was on its way down to my stomach. At the lower end of the stomach, I had read somewhere, there is a muscle called the pylorus. This regulates how much of that soup my intestines would be getting at any given time. Luckily it does not have taste buds.

I came to think of a place in France called Puylaurens. It was the count of Barcelona who in his time built a fortress there. It commanded two valleys and saw to it that only a reasonably small number of Frenchmen could slip into Spain at a time. In the 1200s this became one of the last refuges for the Cathars. I saw this splendid edifice with my inner eye and recalled the hiking tours we had in Languedoc. In view of the feeding bag hanging over me, it was seductive to turn my mind to those fabulous meals I had experienced. Entranced, I set about composing a dream meal of the best I had tasted down there.

For appetizer, there was a giant platter of oysters from the lagoons of Leutate, south of Narbonne. Fresh and salty because of the high salt content of those waters. The main course was to be whole baked quail like we had been served by Anne in the loft of the old schoolhouse in the village of Comus. There the quails had flown up around our legs as we crossed the poor pastures coming down to the village. As in Norway, there are many abandoned farms in France, the fields barely used. For dessert, we would have Flan, a caramel pudding made in small, round forms, named after its place of origin in France or Spain. One type is called Flan du Cathar, another Flan de Cathalan. Lovely and golden with candied sugar on top.

So there I lay and dreamed while the brown-grey soup dripped down to my stomach.

Placed in a wheelchair I sat like a schoolboy with his hair wet-combed, ready to face the challenges of Åse the speech therapist. She was a woman in her best years, with an adult´s patience and tolerance. She was so happy when she had gotten me to count to five. I can still remember the triumph it was when I could name the months of the year. She had her own technique of chilling my lips and cheeks with teaspoons cooled in glasses of ice. Finally, she would press down my tongue with a teaspoon, and by the reaction tell how the progress was coming along. She also had a mirror in which I could view my own face and my expressions as I repeated the phrases she gave me. She made me aware that there is a close correspondence between speaking and eating.

Speech therapist Åse gave me a general awareness of my body that I had not had earlier. She gave me short pieces on local history to read aloud but did not correct me if I read wrongly. Instead, she would point out that I had lifted a shoulder or clenched my fists in particular situations. Gradually she got me to relax while I read a text. In time she had me retell and did not interrupt as I performed what I had to say. Instead, she would comment on all of it when I was finished. In this way, she gave coherence to each lesson.

From Åse I would be wheeled over to Karen, the physical therapist. She had a long list of exercises I had to go through, the most important of which was surely the training in balance. That was sadly unhinged by the stroke. My head had a tendency to fall to one side, and I literally could not tell up from down. I was lame on my left side, but could after a fashion pull myself up to stand on my left foot. The important thing now was to learn how to move my body using the limbs that were intact. To begin with, I could hardly make out the contours of the surrounding landscape through the windows, but as I began to see better, I learned to focus my sight on a house or another object in the panorama outside. On occasion Karen got me to straddle a round plastic sausage while she sat behind and shoved, this way and that, for me to train my balance. The goal was always self-help, but for the meantime, I had to have help for everything.

Every Wednesday morning, we had an hour that was dedicated to practical adventures. These consisted of things like baking rolls, pastries and "cinnamon in the curves". We made waffles and cooked tomato soup, and one day we were put to painting silk scarves.

"We´re having fun now, eh Per?" said Jakob. We two were the only men in the ward. I hung in as well as I could with all of this, but could not help noticing how we lived largely in a society of women, as everything was shaved of manly pursuits. I requested a plank, a hammer, and a fistful of four-inch nails, but I never got them. They were probably afraid I would knock my fingernails blue.

After two months I had come so far with Karen that I began to exercise in the "walkway". There were two poles as railings, and I attempted to advance between them like a normally walking person. My feet went a little bit here and there as though they had their own life, but it was enough to impress the physical therapist. Now she thought I was ready for bigger challenges.

She resolutely applied for my admittance to Kongsgårdheimen, the district hospital´s rehabilitation center in Kristiansand. There, it seems, they had a walking machine that could help me further. Representatives from Kongsgårdheimen came to Flekkefjord, inspected me and found me worthy. And two weeks later I was on my way there, to finally learn to walk again.

## Kongsgårdheimen

I have never sat as much as I did those two weeks at Kongsgårdheimen. To begin with, I was put on a physical therapy bench, where my task was to balance without support. In time I learned to stretch my arms out in all directions, and still hold my balance. I felt like a dog undergoing obedience training.

The physical therapist was pleasant enough and made the decision after one walking tour that I was not ready for this. Instead, I was tasked to pull myself up from my wheelchair and grab the railing on the "walkway" to get support. The problem was that the physical therapist stood too near me so that I was hindered by those large breasts of hers. Several times when I was trying to stand, my head would butt into her beneficent largess.

I knew from the start that I was not in a condition to go through the walking program, because everything I looked at had begun to hop. When in addition I was also seeing double, it was hopeless to try to walk. The dizziness took overhand.

I contracted a bladder infection that really set me back. The nurses began to catheter me, something that is unpleasant enough. And it did not help for emptying the bladder at night. Once when I asked for a bottle, the female nurse assistant grabbed me hard by the arm and shook me, and angrily said that this was the fifth time I had asked for a bottle. That was when I began to get enough of the rather masculine attitude that hung over the ward. I caught myself longing back to the slightly feminine chaos that ruled in Flekkefjord.

The idea of "chaos" first came into my mind one day when the blue-clothed were having a meeting in my room. One of them wanted to do something that did not suit the agreed program, but in an instant, they had shifted around the appointments so that it suited everyone. It was effective and rational, of course, but threw me into a vacuum of distress. I had a great need for peace and predictability, but now I did not know what to expect. It was, of course, ridiculous that I should make such a big deal out of a bagatelle, but my condition was so vulnerable that it took no more to throw me into chaos.

The pleasantest thing I remember from Kongsgårdheimen was when three of us patients were taken to the allotment gardens behind the hospital buildings. One of the nurses had a cottage there and a garden where she grew all sorts of vegetables and fruit. She gave us fresh strawberries. That was heavenly after all the hospital food and tube feeding. The sun was shining, it was full summer, and butterflies sailed among the flowers. True heaven, but just a guest visit for us wheelchair patients. Anyway, the experience stands as a marker for all the beauty found in the world. I will always owe those two nurses my deepest gratitude for the experience they gave us.

## Trouble upon trouble

Back in Flekkefjord, there were more hard knocks waiting. My doctor at Flekkefjord hospital, Rita, had made an appointment for me with the ear, nose and throat specialist who visited the hospital every other week. She wanted to try to identify the cause of my dizziness. Everything in my vision hopped up and down. And when I looked with both eyes open, everything moving was doubled. It was as though I was on a ship in a raging storm. Nothing stood still, and I was victim to a terrible seasickness. The seasickness never let up and worsened day by day.

X-rays suggested an infection in my right ear. This could be the cause. The specialist looked at me with interest and noted that he had never before seen eyes that hopped up and down as mine did.

"You do not need to go to the neurological unit, because now I see the reason for your dizziness," he said. "I think the neurologist will agree with me that you have had a hemorrhage that affects the balance nerve directly. The only thing we might not agree on is the prognosis," he said and made it clear that the consultation was over.

Prognosis.

The word struck like lightning in me. I had not the presence of mind to ask how long he gave me to live. All I can remember is a black emptiness on the way back to the ward. There I entered a state where pity and anger fought for ascendancy. I only remember that I told a doctor that I had no more need of therapy. All was lost.

I must have had a kind of mental breakdown where I locked it all out. Now I began to perceive the details in my surroundings anew, like for example that my room was number 349. It had only one bed and one window, and it was smaller than I had remembered.

The strange posters that had turned into objects were gone, though the room still had some odd aspects. Among other things, a nursing bottle stuck out of one wall and set my fantasy going. Astrid and Maria, Sigurd´s stepdaughter, stood next to it and gabbed away like girls do. Maria was slender and agile, while Astrid still had her wifely shape. Suddenly Maria began to slip behind the wallpaper and was soon out of sight. Ha-ha, I thought, you, Astrid, will never fit in there. But then she also began to shrink, and soon became one with the wall. Then she disappeared behind the wallpaper. Not a movement showed where they were hidden. Three-year-old Aslak had somehow gotten on top of the television below the ceiling. There he had filled his diaper and wanted me to change him. But I was, of course, unable to help, lame as I was in most of my parts. Astrid must have read the child´s wish, and came gliding out of the wall, and as though by magic got herself up on the TV. There she managed to change the diaper, then helped Aslak safely down to the floor again.

I got an extended dream-free period after I began taking a sleeping pill in the evening. That followed after the nurses became worried that I was sleeping so poorly at night. I would often cry out something garbled to people in the room that only I saw, and would lie more or less awake for long periods. Reidun thought that I should have something to make me sleep, but doctor Rita believed I should process my experiences through my dreams. Reidun insisted, saying that it was more important that I sleep than that I lived out my traumas just then. We did it her way, and I began to have quieter nights with deep sleep. The hallucinations and obsessions gradually subsided.

## The dreams change character

In time other dreams and visions came along, but they were of a different nature. Among other things, I was traveling in Africa. There we made a visit to the Masai tribe in Kenya, where we got to see how they managed their cattle breeding. We soon became aware that this was not for free, but that we were supposed to buy a cow which would then be killed in the ritual fashion. The cow would be slaughtered, and together with the tribe, we would then eat it. Since we were so many, more food was going to have to be bought. There was a lot of conferencing, but thanks to a Masai, dressed in western clothes, the formalities were put in order.

How things went, I do not know, as suddenly we found ourselves at a winter sports center in northern Japan. I will not go into detail about what happened there, but anxiety took hold of me anew. The others disappeared and left me, lame and helpless, in a tiny hotel room. This room had a suspicious likeness to my hospital room. Again, I hoped that an ambulance helicopter would bring me out of this isolation. This time it was my younger son, Sigurd, who came to my rescue. He got me flown over the border to Norway, and in Evje in our district, we picked up Siv Jensen (a national populist politician) who was hitchhiking. With her on board, we flew to Flekkefjord hospital, where Carl I. Hagen (a populist party nestor) stood and waited for us at the main entrance. Those two were going to observe how the hospital ran its rehabilitation ward. Things must have gone relatively smoothly, because now I sunk into a dreamless sleep.

The last dream I remember was from our neighboring municipality, Kvinesdal, where I was to join in transporting birch logs in a sleigh. I sat on top of the load, but the logs slid and covered my legs. Again my feet were pinned and paralyzed, and I was abandoned to the horse and its whims. Then I woke and decided to go back to taking the sleeping pills. In overconfidence, I had stopped taking these pills after my meeting with Carl I. Hagen. Now I was terrified and wanted the pills back.

The routines at the hospital changed only very slowly. My lower parts were washed in bed, and then I was sat up and wheeled to the sink to wash my upper parts. I had a new chair, which with the push of a switch raised me to a standing position. It forced me to hold my head and upper body in balance, while I washed my arms and torso. This was not easy, but I got better at it in time, even to mastering my nearly lame left arm. Also, with the physical therapist, most of the training now focused on balance. It was striking how much I had regressed.

Back in bed the nurses propped me up with pillows and gave me tray with some nourishment. It was mostly yogurt and power drinks I took in orally, before getting Nutrison-food via the feeding tube.

So the days passed in interplay between the physical therapist, occupational therapist and speech therapist.

One day the occupational therapist presented me with a board and small packets wrapped in gauze. These I was supposed to taste and guess their contents. Some were sour, others were sweet and yet another was salty or bitter. I had no problem deciding the contents of the packets. In one there were strawberries, in another there was salami, and in a third was cheese, and so on. There was obviously no problem with my taste faculties.

It did not go as well when the occupational therapist tried to get me to put on my socks and trousers. I had to sit up at the foot of the bed, and from there find my balance to maneuver my legs into my pants. Then I was to stand up while I pulled my pants up. That went as expected: I tipped over and fell head first into something hard by the side of the bed. Blood ran from a cut over my eye. But the pain was minimal compared to my fright; fright and the feeling of having lost control. Occupational therapist Laila was, on the other hand, very laid back. She calmly urged me to find my balance before doing anything.

## A special day

One day distinguished itself from all others. That was the 17th of May.

Astrid had come the day before with suit and shirt, because I had to dress up, of course, for our national holiday. The day began with a men´s choir singing in the corridor. I seem to remember them standing in a large room, while in fact they were pressed together at a turn the hallway. In the middle of "When the fjords turn blue", Astrid came in dressed to the nines and ready for the national celebration. I was not even dressed yet, as the nurse assistant had not managed to fasten my pants. I must have been putting on weight. But what the heck. The loose hanging shirt and jacket covered the half-open fly in my pants.

The children´s parade was expected to pass the hospital at ten o´clock. Astrid wheeled me out into the sun, and we found space on the sidewalk. Flekkefjord hospital commands a majestic height in the center of town, with a view over the fjord, the river, and the old town.

The head of our unit, Siri, dressed in Sunnhordaland´s traditional costume, came over and gave me a hug.

It was moving to watch the dressed up children coming up the hill to the hospital. Here the band struck up a catchy march, and the flags flashed out against the green leaves. It is a tradition in Flekkefjord that the children´s parade passes by the hospital.

When the parade had disappeared down the far side, everything suddenly seemed so empty and quiet. Even though it was sunny, the air was chilly. Along with the rest of the crowd, we moved inside where there were coffee and cakes waiting. Astrid sipped her coffee quietly, while I looked out over the sunlit roofs of the town below. The mood around us was hushed. Astrid and I just exchanged looks that held the summation of a long life together.

There was not much to say.

We both knew that our lives were ruined.

## We do adult education

It was vacation time. We already had quite a few substitute nurses, but now the new vacation substitutes arrived. I remember, as though in a foggy dream, a former Latin American beauty tidying my face. She whispered tender words to me and must have thought that I was asleep. Perhaps I was dreaming, but I clearly remember seeing her face above me while she whispered words that sounded like sweet music in my ears.

Our next meeting was not quite so romantic. I had rung for the night nurse to get a bottle, and I made it clear that I needed help to pee. That was too much for the Latin American nurse, who grabbed a bunch of diapers and stuffed them into my crotch. She was probably afraid to soil her delicate Catholic fingers with an uncircumcised, Protestant penis like mine.

It was even worse another night when I was dreaming so sweetly. It can be so lovely to release one´s need for the lavatory, and that is what I must have done in my sleep. Because when the night nurses finally came, the calamity had already occurred. Angrily, one of them confirmed that the only solution was to get a new bed. That she did and rolled the bed up beside mine. Then she gripped my left arm, set her feet and pulled with all her might to get me over into the new bed. There was a pop, and I cried out from pain as my arm went out of joint.

I don´t remember more of what happened, but there had been a settling of accounts the next day. I never saw that night nurse again. The repercussions I struggled with for the next year.

Strength abounded also when our summer substitutes from Jylland (western Denmark) were on duty. The window in my room had stood half-open for weeks, as no one was able to close it. Our Danish friend pulled all she could, but unfortunately, the window came loose from the frame.

"Oh well," she said and shrugged her shoulders. And so the window was left until the janitor found time to do something about it.

Another time she was supposed to give me my dinner from the bag through my feeding tube. She managed fine getting the bag hung up on the rack, but hooking up the tube was more difficult. In the end, she had broken the screw cap to the drip unit.

"In the home nursing program in Jylland we are used to making do with what is at hand," said our Danish friend. Resolutely she took a pair of scissors and cut a hole in the bag. With an empty syringe, she drew up 50 ml of that brown soup that was dinner. This she injected through the plug directly into my stomach.

I protested weakly but was not heard. "I will get diarrhea," I said.

She turned a deaf ear, and within three or four minutes the whole contents of the bag had been injected into my stomach.

"That is the way we did it in the old days," she explained.

I was right. The diarrhea arrived, but by then our Danish summer substitute had finished her watch. Another one got the job of cleaning up.

There is nothing wrong with the education of our summer nurses, but either they are too young to have practiced what they were taught, or they are too old to have the benefit of new learning.

Our regular staff ran from one room to another to teach and train the newcomers, that and putting out fires. As vacation time approached, they were so gray and drawn in their faces that I wondered what they could even appreciate in their first free days. In this situation there was nothing for it but that some of us long-term patients had to tackle the "adult education" task. We were in any case better acquainted with the routines and tasks than the new summer subs.

## Hemorrhage number two

Flekkefjord hospital had only one old CT machine. It gave good enough pictures, but with too little resolution and detail in relation to the more advanced MR machines at Sørlandet Hospital in Kristiansand. It was time for a more exact examination to determine the cause of my dizziness. I was taken there in an ambulance and was met by well-prepared nurses. They had read and studied the papers that had been sent ahead of time.

I was examined by a young doctor who wanted my full medical history as detailed as possible. Afterwards I was taken for photographing. I suggested jokingly that I would soon be self-illuminating with all these pictures, but was assured that the MR machines gave off much less radiation than the old CTs.

Next day I was unexpectedly sent to be scanned again at an early hour, as the doctor had found something that he wanted to look at more closely. I got the explanation later.

The hemorrhage had started in a so-called angioma, which was a defective blood vessel that I was born with at the stem of my brain. An angioma is a benign tumor, consisting of blood vessels. They seldom grow larger and are often viewed as anomalies. In other words, I was born with this anomaly, and now this spongy growth on a blood vessel had begun to leak. This could have happened many years ago, was the comfort the doctor offered. It appeared that I had suffered a second hemorrhage a half year after the first, and the blood had disturbed my balance nerve. That was why everything was bouncing in my sight. There was no possibility of surgery, as the nerves in that region are so dense that the result could be fatal. With that message, I was sent back to Flekkefjord.

"Oh no, you have had enough to struggle with already," Reidun burst out when she heard what the neurologist had found out. Reidun was the head nurse for our unit.

## An accessible home

Now I could begin taking a short leave from the hospital. The occupational therapist Laila and nurse Reidun accompanied me the first time. They would ascertain whether our house needed changes so that I could live there. I was confident that everything was in perfect order, shipshape, as we had planned our house as a lifelong home.

It was an expectation that one of our boys would take over the farm that Astrid and I had decided to build a retirement home on the property. Astrid´s mother had planted some trees in our pastures in the 1950s, and some of them were now mature for cutting. At a local sawmill, I had a lot of boards sawed, including paneling for use both indoors and out. In cooperation with architect MNAL Arne Åmland we drew the retirement home, built on the plot where the original main house on the farm had stood. We figured out that it had been some 2,500 years since any house had been built out of local materials here. Lista, our peninsula, had been completely deforested in the early Iron Age and had since been covered chiefly by heather.

The bath was large enough to accommodate two wheelchairs at the same time. Had I known what I know now, the bathroom door would be a sliding door. Now it opens into the bathroom and is mostly in the way. The shower and the doors in the rest of the house are one meter wide, and all the sockets and switches are at wheelchair height. Everything is on one floor with two toilets and no thresholds. This I had managed to complete before I was taken by the stroke. We had just moved in with all that we should need in our old age. That meant that we had also gotten rid of all the unnecessary stuff that had piled up over the past thirty years.

I soon got into a routine of taking weekend leave. Friday afternoon I would be signed out of the hospital and signed in again on my return Sunday evening. It was such a pleasure to pass the weekends at home. Saturdays and Sundays there was little happening at the hospital, and the hours were long and boring. All of the regular nurses were free and the therapy suspended. At home, I could at least hope for more exciting food, and the environment was more encouraging. The ceiling didn´t have the 1366 holes like the ceiling at the hospital. I had counted them more than once, and now I would rather lie in the living room and watch the birds outside.

Each morning two care-assistants came from the home-nursing program to clean me and see that I got dressed. Each evening one from the program came to help me in the bathroom and see that I got to bed. To begin with, Astrid felt uncomfortable with having strangers invading our private sphere. But after a while, she found out that it was both necessary and desirable. The quality of this care varied markedly, but most of our care assistants were pleasant and easy to get along with; and they made life easier for both Astrid and me.

## A uridome of bother

It was with excitement I approached my home for the first time since my stroke. I didn´t dare believe it wasn´t a dream that Astrid and Sigurd had made an arrangement that our house was to serve as a convalescence home. When I saw that nothing had been changed, I tried to hide my relief.

After the house was approved as housing for a handicapped person, there remained to make some adjustments with the handicapped person himself. I had become fairly continent by now, but it still happened that I wet myself at night. Now we began an experiment, initiated by one of the older nurses. She remembered that some years back they used a thing called an uridome.

"Yeah, but we still have some of those in the storeroom," someone said.

An uridome is made of a condom that is pulled onto the penis, with a tube that runs down to a bag that is attached to one leg. Ane Marie was the first to try this out, and with satisfactory result. The bag could be emptied, and the uridome used until it loosened itself.

On my next leave, an uridome was attached in due fashion. And thereby night wetting ought to be prevented. I had only just fallen asleep when I awoke with a wet right foot, and I had to call for help. The tube had loosened from the bag, so it was back to the urine bottle for the rest of the time at home.

We had to try again. Back at the hospital, the young nurses were put to fitting the uridome, but the result was just as poor each time. The saying "the oldest are the elders" passed its test. Ane Marie and Gull-Britt were the oldest nursing assistants, and as a rule, they were successful. Ane Marie revealed her secret. She clipped off 10-15 cm of the tube so that it wasn´t torn off at night. She got the nickname "the nimble-fingered one".

It was nonetheless decided in family council that the uridome was of little practical help, and it was therefore traded for the bottle again. After a while, it wasn´t necessary to call the night nurse or Astrid more than once a night, and so the bed-wetting was brought under control.

## Time is relative

How long is five minutes? Most patients have probably wondered about that question.

Chirp, chirp. The sound of the alarm bell told the staff that I needed help. I was allowed to ring for help to pee. The alternative to the bottle was to change wet bedclothes.

The door opened a crack, and a nurse assistant stuck her panting face in and said something like "Just a sec".

"I just wanted..."

And the door closed again.

I rang again, and after a while, the same head was there: "Just two minutes." And the door closed again.

I cursed my slowness when it came to expressing myself, surely stemming from my infirmity. Before I could say that I needed a bottle, so much time had gone that I had only a closed door to speak to. But I knew from experience that two minutes was the same as something like five. If they said five minutes, it was guaranteed that both patient and nurse would have forgotten what it was all about.

## Visits for joy and wonder

What is it with hospital visits? Some people are so heartfelt welcome when they come, and deeply missed when they have gone. Others are just as welcome, but the heart is eased when they are out the door. Some are so reluctant to step over the threshold to a sickroom, that the patient feels for them as they shrink away. Again, others have so obviously dreaded it long before they come, but are so lifted up when it goes well that they sit for hours. Even if the patient closes his eyes and makes as though he is sleeping, they sit on and talk long past the reasonable time for a visit.

One can always tell from the faces of the more peripheral guests what kind of visit one can expect. If they have drawn their faces in distressed sorrow, one wants to help them to make the visit as short as possible. One has more than enough of pity oneself. In the hospital environment that stuff is cured with black humor. If anyone should ask, for example, that rhetorical, but stupid question "why has this happened to you?" I could answer that Astrid and I had long ago gotten to the bottom of that. We had decided that it was because our Lord would teach me patience. That was neither as pious nor as Christian as it might sound. It was either a matter of a revengeful god, or it was thoughts of reincarnation taking a turn. In order to pay for sins in the old life, one had to atone for some in the new.

The most prestigious visit has to be mentioned first. That, of course, is the doctors´ round: You know that parade with two doctors in front followed by a student in final residency and nurses in descending rank. That is the way it was in hospitals in the old days anyway. In Flekkefjord one didn´t see that kind of parade any longer, at least in the rehabilitation ward. Rita, our regular doctor, was around constantly and was as glad to speak with the relatives as with the patients. At times she would expand on theories that could make anyone´s head spin. Rita was maybe the first doctor I have met who has over-fulfilled her duty to provide information. And everyone loved her.

A friend in need is a friend indeed. That saying applies to some of my visitors who came again and again. I was lucky in having a lot of visits, though some people I never saw. That is probably because they so dreaded seeing me in this new state, and couldn´t bring themselves to come.

There was hardly a day that someone didn´t look in. Among the most loyal were our close friends Tøri and Thyge. They never passed Flekkefjord without visiting me. Tøri and Thyge kept me updated on all the important activities in the local community. Our neighbors at Huseby, Inger and Trygve, kept me posted on everything that did not get into the local newspaper. It was refreshing after all the self-pity I let myself sink into from time to time.

My cousin Bjørg, who is about the same age as me, was for her part set on keeping me à jour with what was going on in my large family. We grew up together in Trøndelag, but she had now lived in Flekkefjord for decades. The retired skipper Kjell, who had helped me winch out hundreds of cubic meters of spruce timber over the winter, was also a frequent guest. He was strong enough to take me out on trips to town, and then push me up the steep streets to Flekkefjord´s Potala again. In this way he gave thanks for the fine moments we had had in the woods together.

My most frequent visitor, after Astrid, was Stephen, who had called the ambulance when the fateful stroke hit me. Now we could exchange thoughts about the book projects we both were pregnant with. He was the only one in whom I felt I could confide my sorrows and worries. Stephen listened patiently and with understanding, without – seemingly - letting himself be burdened by my confidences, for there were many of those. I had lost belief in ever getting out of a wheelchair and saw no light in the dark. Neither Astrid nor I were getting any younger, so I couldn´t see anything but a dismal future. It was enough to wither the flowers.

Flowers I had gotten a lot of! It had gone so far that doctor Rita and the nurses discussed whether it was healthy for me to have so many plants in my sickroom. The compromise was moving the tropical garden from the windowsill out into the corridor at night.

The dearest visits were when the grandchildren came. I remember especially one time when Sigurd and his family came. They took me out onto the terrace outside the canteen. It was as usual empty of people, with plenty of space for the kids to run around. Aslak, who was three years, played airplane between the tables. With outstretched arms, and legs going like drumsticks, he ran back and forth. The whole time he was watching to see that he had my attention. It was as though he wanted to say: Look, Grandpa. I have quick legs. You can borrow speed from me.

Astrid and I used the terrace often when we needed to write a letter or discuss things freely. If the weather was bad, we had our corner in the lobby, with a view over Flekkefjord and the river.

At times Flekkefjord´s famous kayak paddlers gathered at the mouth of the river and raced back up to the bridge. That was the sprint that concluded their training session.

## Alerting our municipality

Astrid was amazing. She visited me almost every day after I got sick. She kept it up for the whole time I was in Flekkefjord hospital. That meant two hours driving time every day.

One day she got word that the home nursing service in Farsund had been notified that I was coming home. She almost panicked, for she didn´t feel prepared to bring home a husband who was one hundred percent reliant on nursing. Astrid requested a meeting with the department head, Siri, and asked to know whether any decisions had been made over our heads. Siri apologized that there had been a gap in the information flow, but that it was a simple routine matter to send such a notification to our municipality.

After this, I was in Flekkefjord hospital until the end of summer, and can only be grateful that I could be there for as long as five months. Following that first meeting between Siri and Astrid, there were many meetings where we were both present. Astrid was anything but reassured by what she heard. When my treatment at the hospital was concluded in the near future, responsibility for follow-up would fall to our municipality. Some municipalities were quick to offer a rehabilitation program, while in others years could pass. If they set up a rehabilitation option, it could often be combined with the care given to people in the final phase of life. Here both young traffic accident victims and people with strokes were to be helped back to an active life, in the same program with the dying. For the personnel who got these jobs, it presented a terrible dilemma. In the one instance they were to motivate and stimulate as best they could, but in the next instance just comfort and give final care before life´s end.

What might I expect? Neither Astrid nor I had thought this over earlier. But now it suddenly became an important question for us. Farsund municipality had chosen the worst possible solution, namely to put rehabilitation under the unit for terminal nursing. The municipality was however lucky in that the South-Eastern Norway Regional Health Authority offered a rehabilitation alternative, which they called The Farsund Geriatric Day Hospital. There they had both physical therapists and occupational therapists in addition to nurses and doctors, so they offered a cross-disciplinary milieu. Only the speech therapist was missing.

## Left to one´s own resources

The thought of leaving the hospital was frightening. Life here was so safe and unconditional, and the prospect of leaving the hospital filled me with anxiety. What awaited me outside these walls? The thought of lying by the big window in our living room was tempting. It was still summer, and I would be able to follow the animal life from my bed. In the lake, a hundred meters off, geese and ducks were foraging. The biological diversity of Krågenes Lake provided for a rich variety of birdlife. This lake is protected as a bird sanctuary under the international Ramsar Convention.

It was summer, and the thought of home made it easier to take farewell with the hospital and the many contacts I had there. I had become fond of both the nurses and therapists. But what awaited me at home?

Astrid and I were left to our own resources. We knew little of what obligations the municipality had, or what rights I had as disabled.

There were a lot of meetings about my future. I was used to a rigorous regime of therapy in the hospital. At times I was so exhausted after hard spells of training that I just asked to be wheeled into bed. The physical therapist, Karen, gave me full support. What I had been through that day was equal to two marathon races. What took most energy was not the actual exercises, but the coordination of muscles to accomplish an exercise.

Astrid was persistent regarding my needs and insisted that I could not be discharged before I had a concrete alternative, and at least as good. The municipality had nothing to offer, but Farsund Geriatric Day Hospital opened its arms and doors. A whole delegation came to Flekkefjord to look me over. Once more I felt like a performing dog demonstrating the tricks I had learned: the range of my mobility, high and low; walking in the parallel bars; and spreading mackerel-in-tomato on slices of bread.

My performance must not have been very impressive, as I was to hear that they had quickly placed me in the group of "long-term patients".

In one way I was pretty much finished with the hospital. Not that I had regained my health, but after six months I was tired of those white walls. Life went along in its safe but routine pace. With my physical progress so slow, the exercises became ever harder. The question that arose was: what is the use?

My thoughts revolved around death, and death as a liberator. Better to die at home than in these godforsaken surroundings. Or was there hope? Each visit home lit this hope and gave my existence new depth.

## Just as confused

If I had believed that the line between fantasy and reality would become clearer after my discharge, I was sadly mistaken. The training at Farsund Geriatric Day Hospital was pretty much the same as at Flekkefjord Hospital. There was no speech therapy, replaced by the exercise of walking between two nurses. Besides, they had a cycling apparatus that everyone wanted to use. It told you in English how far you had cycled, and the time you had used. The display also gave information about energy consumption and other inessentials. When it was in the mood, it gave the information in German. Everyone loved that machine.

From the beginning, I was sure that the dizziness was real. Without that I could have let go of my two escorts and walked around on my own, I thought; as it was now, I was even more dependent on help. I had entered a negative loop. The dizziness, be it real or imagined, was impeding my progress in therapy. I was regressing rather than progressing.

It was encouraging to have new specialists giving me advice and guidance, but a strange thing occurred: I lost interest in therapy. The dizziness increased, and my accomplishments decreased proportionally.

Afterward I have thought a lot about what actually happened. At the hospital, I had never felt pains, but now they set in. Those around me assured me that I was continually improving at the tasks I was set to do, but I myself had a feeling that I was in decline. At the same time, the discomfort in my weakened body increased.

Could it be, I pondered, that my nervous system was beginning to function more nearly as normal so that I was just beginning to feel how bad things actually were? No one could give me an answer to that, but the physical therapists and the doctor did not deny the possibility. Whether the dizziness was imagined or not, its effect was real enough.

I spent a lot of time speculating over my fate. Again and again, I tried to peel away dream and fancy so that I could be left with plain facts. They were few but simple enough: I was unable to walk, I spoke with great difficulty, had trouble eating and struggled to keep myself clean. In other words: I was strongly dependent on nursing. Even though Astrid got help both evening and morning, there was no denying that we were both getting older. She could also suddenly need nursing.

My incapacity coincided with our grandchildren's growing need for support and help from us as grandparents. The situation was anything other than bright. Against this were the facts that I had the blood pressure of a seventeen-year-old, good appetite and slept well. I couldn´t, in other words, just lie down and die. I needed to make a decision, and that seemed pretty simple. In spite of the dizziness, I had to train myself up. My body demanded that I kept myself going and took care of what was left of it. I brought this decision to those who trained me at Farsund Geriatric Day Hospital. They were pleased and offered full support.

"We have been waiting for this, but you have to come to that point on your own," was the answer I got. "Don´t give up," was the message everyone gave me.

Give up what? What was lost if I were to pass on? A bunch of problems, maybe? So much the better?

Almost no day passed without these questions coming into my head. But, lo and behold, my body learned to react without my head´s involvement. Getting from bed to chair and back, now went smoothly. A number of other things that I trained on went better, in spite of my feeling out of balance.

When I expressed some of my dark thoughts to my regular nurse, she went straight to the doctor with it. Was I a possible candidate for suicide?

"Tell me, do you beat your wife?" asked the doctor. Laughingly, I replied that it had never come to that. She said that it was not unusual that a man in my situation became so angry that he thrashed his wife, there when she lay unsuspecting in bed beside him. Patiently she explained that it was common for patients with brain hemorrhages to experience personality changes. They could become irascible, impatient and angry. This has to do with their life situation, so abruptly turned on its head. Things that earlier were carried out in a moment now took a long time or were no longer possible. Small trivialities had become huge and unsolvable problems. Normal problem solving is no longer enough. All of this overwhelms a person who is totally unprepared. And it affects his closest family and friends substantially.

## A need for psychiatric help?

If a person has been witnessing a murder or been involved in a serious accident, a crisis team would be ready to help. A stroke victim, on the other hand, is left entirely to himself. No crisis team here, not even someone who can explain to you what has happened and the psychological consequences of it. It is no wonder that stroke victims are thrown into the darkest depressions.

It is often said that the patient gets grief reactions. The stroke victim grieves for everything he has lost and lost out on. It can be things as simple as playing with grandchildren, travel that will never happen, or being able to eat with a knife and fork. So many things are abruptly beyond the capacity of the helpless patient. This grief arrives fairly soon for everyone and will be there always. All things considered, the grief reaction is natural enough. A problem arises when this grief slides into deep depression. That is when the doctors reach for what in general terms is called "happy pills" - anti-depressive drugs. These pills are intended to lighten daily life for the depressed person but only serve to sweep problems under the carpet. The problems will always be there, though perhaps easier to bear later on. The use of anti-depressives underlines the patient´s need for psychiatric help.

Why isn´t psychiatry linked to the rehabilitation work? The use of anti-depressive drugs demonstrates the need. The answer lies in the swelling hospital budgets and strained municipal economy. It would quite simply be too expensive. The question is whether pills can substitute for a good conversation or a shoulder to cry on. The problems are there in any case; it is just that the pills are cheaper as an acute problem-solver.

Regardless of how one looks at it, there are many psychological problems that have to be contended with. Grief, loss of dignity and many other difficulties will always accompany a stroke victim, and the problems are not going to be solved with magical formulas.

## Individual Plan

The lovely summer was soon over. Daily life hit us with full impact. In step with the leaves falling from the trees, I needed to face reality. It was clear that I would be nursing-dependent for the foreseeable future. Astrid would also be older in time and would get problems taking care of a man in a wheelchair.

I was determined to avoid whimpering, fully conscious of how easily I could come to wear Astrid out. Dependent on nursing as I was, I needed help with everything. From her side, Astrid made clear that she wanted me home. A nursing home or other type of institution was not in the cards for me.

Looking back I can see that we were both optimistic and naïve. My progress in therapy at the hospital had been significant, but it did not continue at the same tempo. The dizziness, which I got from the second hemorrhage, spoiled a lot for me. Not only did it set me back physically, it took from me the motivation for training. It wore on both of us. Astrid was soon tired of my continual call for the urinal bottle and I came to feel depressed and sorry for my pathetic situation.

It became clear that we needed to organize our lives differently, and I asked myself how I could muster the motivation to go on.

The answer seems to lie in part in the goals that you set for yourself. It could be a kind of superior objective, such as living at home for the rest of your life. But just as important are the partial goals you set, for instance drinking a cup of coffee without spilling. Such partial goals are set to be achieved, and each one achieved is a victory. It is important that the stroke victim is engaged in setting up these goals, allowing him or her a feeling of progress and continually achieving new partial goals.

This is what a so-called Individual Plan is aimed to assist. This "Plan" is a right established by law, an obligatory aid for all functionally disabled, and is to be set up by the hospital, or the municipality when it has assumed responsibility for rehabilitation. An Individual Plan is to contain a principal goal (main objective), or a vision if you will. And under this vision follows a list of partial goals, which should lie within the potential of the stroke victim. This plan is to be revised periodically, and it is important that the patient takes part in the planning and definition of all aspects. Used properly, this is a good aid and tool for the disabled. It is cross-disciplinary and could usefully include a section on psychiatric help. It should be emphasized that the plan needs to contain partial goals which are realistic so that it is experienced as a relevant aid for each individual. To achieve this it must be straightforward and easy to navigate.

Everyone needs to be reminded that the world does not stand still.

## The municipal administration – helper or opponent?

A short while after I had returned home, we were visited by a person from our municipal administration. She explained the types of assistance we could claim and gave us a form where we could cross off for things for which we wanted to apply. She didn´t say a word about the Individual Plan or (BPA) "user-directed personal assistance". That gave us a small warning that we could not expect the necessary support and help from the municipality to simply materialize, we would have to fight for it.

Astrid began to receive, fairly soon, a caregiver wage, based on a calculation of one hour a day extra work. One hour a day! It is true that we had home nursing care morning and evening to help me in and out of bed and clothes, but it was otherwise Astrid who served around the clock. Her extra work because of my disability ran closer to five hours a day, conservatively estimated. Astrid cried a tear over this under-evaluation of her effort but accepted it in time.

I dreamed one night that there stood one hundred women behind every disabled person. This was said to me in a strong and authoritative voice. When I awoke, I remembered this dream and began to think the matter over. There were probably fewer than one hundred women, but the number was high. I could only remember a few male doctors, and a physical therapist that was a summer substitute, but he was educating himself out of that profession. The rest were women. There were doctors, nurses and assistant nurses, speech therapists, occupational therapists, and physical therapists. When we then came into the municipal health services, it was also populated with women. At the top, there was, admittedly, a man, but he was as distant as a cosmic cloud.

Those whom I primarily was in contact with were the home nursing staff. I have earlier mentioned that the quality here was variable, but overall, I must say I was impressed by their services. Not only did they see to it that I got into my clothes and out of them again, but if they saw any sign of a sore, it was registered and treated. If I needed to go to the toilet, they were there in an instant, ready to help me. Two of them were so extraordinary that I soon baptized them "the star team". When the daughter of one of them began to practice nursing, it was natural to call her "the comet". She was clever like her mother. I also had less flattering nicknames for some, though not to be mean. It would have been hard to remember the names of all those who were involved, so it was useful to have nicknames to characterize them. They were many as time went by, so many that Astrid felt herself invaded.

Just the business of getting from the chair to the bed raised certain problems. Two of the older ones might have needed hearing aids, because they did not hear what I said. If we were to count to three, they had gotten to three before I was finished with one. So they heaved me up as though I were a sack of potatoes. The result followed suit. The young ones were better at it technically speaking, though their motivation was not always as strong.

## Reorganization

Just as we had begun to get used to the home care teams and even begun to think of them as family members, we got another cold shower. In our local newspaper, we read that the home nursing program was to be reorganized. The home service teams, those who had helped with housekeeping chores, were now to be reassigned to home nursing care. What about us users? No one had thought to inform us.

The newspaper gave us a full and lifelike accounts of what the many experienced home nurses had to go through after the reorganization of the unit. I heard of a user who had had the same home nurse for thirteen years, and suddenly found a new person standing in the doorway. The new home help person was the first in a series invading the house. Not to speak negatively of these home helpers, but something had gone terribly wrong with the unit´s reorganization.

We the users of the home nursing services all experienced the same problems. Evening and morning each day of the week there passed a quiet train of home nurses through our house. While earlier it had been the same people coming again and again, becoming our friends and confidants, after the reorganization, it was always new faces to see. Not all of them presented themselves by name when they arrived, and some were clearly unmotivated for the job. I understood them well, as it must have been tough to be removed from the job they had worked themselves into and reassigned to something completely new. They were never asked whether that worked for them. But it is not right to allow that dissatisfaction to affect the quality of services we receive. Think what we experience! Streams of strangers invade our private sphere. As there are so many part-time positions in the home help and home nursing services, I get the feeling that half of Farsund´s adult female population has been through our house. Since I am one hundred percent nursing-dependent, all of these have stripped me naked, literally. Neither is it easy to use the toilet when strangers are standing by, fidgeting to be on their way. Everyone should understand that they are pressed for time. I understand that also, but it doesn´t make it easier to perform.

We read that the home help staff would have to take shifts as home nurses on weekends. They don´t hide that they are obviously not qualified for the job. We users have to spend time "teaching" the stream of new helpers, and that even applies to women with training as assistant nurses and nurses. They had not had time to get accustomed to the situation in my home before they are sent here alone on the evening shift. Where, for example, is the foot lotion, the eye drops and so forth?

These abrupt changes in working conditions can be seen as an infringement of employee rights. Agreed that the municipality stands free to organize its operations, yet an important condition must be that the personnel are consulted. There have to be alternatives to sending a major part of the community´s female population out into the unknown.

I believe that I speak for many patients when I ask that the number of home nurses serving any single user be reduced. It must be possible to quality check reforms that are to be initiated. The objective is certainly not only saving money? Then instead of home help, the program becomes help for the municipality, was that its purpose?

Why are our health and care professions so full of women? Is there a biological explanation, or does it have to do with salaries? Maybe it is more natural for women to provide care? To begin with, I believed, in my foggy consciousness, that I had become more attractive to women after my stroke, and joked about this more than once! But as time passed this became a source of wonder.

After I had returned home and to some degree reestablished earlier social contacts, I found it remarkable that the women were more interested in what I had been through than the men were. This seemed to suggest that they were more concerned with their fellow beings than males. It is striking anyway that the disabled meet so many women. In short, we are enveloped by them.

Care and nursing is one thing, but rehabilitation is something else. That does not mean that the one excludes the other, because a successful rehabilitation also requires good nursing.

Rehabilitation is defined this way in the Parliamentary white paper nr.21 1998-99, page 10: Rehabilitation is time-limited, planned processes with clear goals and means, where several actors cooperate to provide necessary assistance to the service user´s own efforts to achieve the best possible functioning and mastering capacities, independence, and participation socially and in the society.

In other words, rehabilitation is about much more than learning to walk again after a stroke. In recent years the psychological aspect has been given more weight. It has been pointed out that rehabilitation is an interior process. The goal for rehabilitation should be to give the person an experience of worthiness and dignity, to quote nurse Siri Vegge.

She has been the leader of the rehabilitation unit of Flekkefjord hospital for a number of years. In her dissertation she writes: The word rehabilitation means to reinsert dignity (...) This is a word that most of us understand, and that works well in practice. The different actors may focus differently as long as what they do has a positive effect on the service user´s sense of dignity.

It can´t be denied that she has strong reservations regarding the use of nursing homes as arenas for rehabilitation. In her dissertation she sums up the disadvantages as follows: In the first place the rooms are too easily used for other purposes, resulting in a mixture of various activities, and there can develop a tendency that staff are not recruited for their relevance to rehabilitation (....) Employees find it problematic to work with patients in nursing and patients in rehabilitation at the same time.

## User-directed assistance (BPA)

I applied for "User-directed personal assistance" (PA in English), but this was rejected by our municipal authorities. We appealed the case, and the County Governor of West Agder County gave us full approval. I eventually got a user-directed personal assistant for ten hours per week. It took eight months before I got Jorun S. Tveit for as much as fifteen hours per week, though five of those hours were temporary. This meant a great deal for Astrid who could have a few hours for herself. Once she was able to take off a whole long-weekend, as Jorun could stay with me. I also took great satisfaction in these developments, because now Jorun could help me with what I wanted most of all, namely to write.

In periods I could be gripped by pessimism and would sink into the deepest darkness. The awareness of what I had lost and could never regain triggered a grief process. I would never be able to play with my grandchildren in the woods and fields, and never visit my aged mother in Trøndelag. There was no end to the ways I painted everything black. At times I just wanted to die as soon as possible. When I expressed these thoughts, Astrid would go into a rage. It was more out of helplessness and desperation than anger, she said afterwards. She would, of course, have liked for everything to be as it had been, but the situation was something quite different. We both had to reconcile ourselves to the fact that things would never be like they once were.

Anyway, we did have moments that reminded, however weakly, of the old days. For example, I managed to move myself from the wheelchair to a corner of the sofa in our TV-room, and Astrid could then sit in the other corner and rest her feet on my lap. We had sat this way so many times before I got sick. Gone was the wheelchair, and everything, to all appearances, was like before.

## Hard training

At the Farsund Geriatric Day Hospital, where I had begun training right after coming home, everything went according to schedule, three days a week. I did what was asked of me, though I did not feel that I was really making headway. But this could not be the case, because I was continually being reminded that I was doing things that I could not manage earlier. At any rate, I saw the necessity for keeping my body in condition so as not to collapse physically.

When half a year had passed the question of an Individual Plan was brought up. I did not know then what this was but was informed eventually. The Plan is to contain the user´s explicit immediate objectives and principal goal, together with the user´s resources, which should be the central issue to focus on. Remedial measures and limitations are to be included, and finally an evaluation process, of course. It is to help the individual to structure his day and at the same time show the user where he stands at any given time. It is the hospital or, after his discharge his municipality, that is responsible for setting up his Individual Plan.

In my case, there was no forming of a plan while I was in the hospital. The Farsund Geriatric Day Hospital reminded our municipality that I was supposed to have a Plan, though nothing happened. In the end, the Day Hospital called for a meeting at my place. The meeting included representatives from the municipality, my physician, my family, the local social services office (NAV) and representatives from the Day Hospital. The main lines for my Individual were defined, and the municipality was given a target date for its framing. But nothing happened, so Jorun took matters into her own hands. Jorun has training in rehabilitation, and could therefore make an Individual Plan that was a useful tool for me. Farsund municipality approved it.

My training at the Day Hospital was eventually cut from three to two days per week, but I still felt that there was progress. This was because I had decided that the dizziness was not going to keep me from training. I had to get results despite it. It turned out when spring arrived and we had the end-of-term party, I managed to dance a waltz with occupational therapist Margrethe. I would not have gotten high points for the dance, but I still felt it was a big step forward.

## Lonesome at the Day Hospital

It is ten minutes to ten, the 12th of August, 2008. The taxi driver has just parked my wheelchair in the middle of the kitchen floor at The Farsund Geriatric Day Hospital and abandoned me with a cheery see you this afternoon. The last thing I see is the door being closed.

It did not surprise me that the kitchen was empty, as I figured that the person responsible for breakfast was out getting the sandwich spreads. But then I noticed that the places were not set for Jakob and me, we two disabled who usually ate breakfast together. That was really unusual, even if I was a bit early. Breakfast was to begin at ten o´clock.

After half an hour with no one showing up, I began to feel anxiety rising. There was no alarm button here that I could see, and not so much as a sheep bell to ring with. Each time I heard someone in the hallway, I would call for help, but no one reacted. With quite a bit of trouble I managed to turn my wheelchair around, and with my good right arm scrabbled over to the door. I grasped the handle and got it to release. With a kick, I opened the door wide. There were many people walking past, but most of them were regular civilians coming to visit their relatives in the nursing ward.

Finally, a nurse in a white uniform came along. I called to her and asked how long I would have to sit alone like this. But my call for help was apparently not heard. In any case, she hastened on her way as though nothing was amiss.

It was very unpleasant to be left sitting like that with no one checking to see what was going on. After nearly an hour, Margrethe came by to fetch more coffee from the kitchen. She took me to the Day Hospital´s office, where the management was engaged in planning activities for the autumn. They quickly looked into the matter, and it was discovered that those responsible for serving breakfast to outpatients were out sick. No substitutes had been put in their place.

There was no breakfast for me that day.

Some weeks later I was standing in the food line at the cafeteria together with physical therapist Therese. Ahead of us stood a substitute from the nursing ward. She turned and spoke to me, probably because we had once known each other years before.

"Have you gotten yourself someplace to live here at the nursing home, Per?" she asked.

I answered that I still lived at home.

"Right, so you are one of those that chooses to torment their wives to death," she answered.

Curtain drops.

Her remark gave me something to ponder. Harboring such a thought is one thing, but to say it out loud was a bit much. One could easily discount it as a lack of manners, but it may also be taken as an expression of attitudes that prevail among some of those who work in the care and nursing system. It is said that within the next five years we will need six thousand new caregivers here in Norway. Where are we to find these? Judging from that remark, we have already scraped the bottom of the barrel.

## "The elderly wave"

The wave of elderly is already rolling in over us. The number of pensioners will increase from fifteen to thirty percent of the workforce in the next thirty years. If we continue our current policy of building nursing home capacity for everyone, we will soon be faced with a crying need for caregivers. The answer has to be building lifelong residences so that the elderly can live at home as long as possible.

That reality was something we took into consideration when we built our retirement house eight years ago (in 2002). There are no sills in the doorways, and all the doors are one meter wide. Heating is based on sub-floor heated water circulation driven by a heat pump, and so on. The result is that the house is easily managed, and even young people find it a good living space. It is puzzling why architects today draw houses full of stairs and other hinders for physically disabled people.

Forward-looking municipalities that provide home nursing services save hospitals the expenses of corridor patients and patients who require beds for recovery after they have been treated. This reduces hospital expenses though it is more expensive for these municipalities. Others choose to save money by not providing services for dealing with those who have completed hospital treatment. This relieves pressure on the municipalities, piling the strain back onto the hospitals or on patients who are sent home to an empty apartment. This can lead to human suffering and huge practical problems for the individual. This dichotomy plagues the whole Norwegian health system and leads to corridor patients and waiting lines in the health system. For the individual patient it must feel demeaning to be driven home to an empty apartment, or in the best case to a house that is poorly adapted for the incapacitated.

Politicians have surely not thought through these problems. They play the "who´s got the joker" card game, without serious enough thought for either the socioeconomic or the personal consequences. If they have heard of the elderly wave, it is at best a theoretical problem for them. They cannot conceive of the human tsunami this will entail. In the coming years, the number of patients requiring rehabilitation and nursing will expand quickly. If society is to have a capacity for taking care of these elderly and those needing care, the municipalities will have to assume their share of responsibility. A rehabilitation option under municipal direction is grounded in national law, but this presupposes that the Government and Parliament follow up with the money required. Still, a huge amount can be accomplished with the resources the municipalities already have.

I am not against building nursing homes, but I believe that they should primarily serve for people with dementia and for those who have entered life´s very last phase. The other group for consideration here is those who have finished treatment in the large hospitals and need a bed and nursing care before they are sent home. That way we can avoid sending people home helpless.

It is with the municipalities that the responsibility lies for those who have completed treatment in the central hospitals. This battle of interests between the municipalities and the large hospitals is a senseless waste of society´s resources.

Those today who are charged with management of the municipalities´ resources are themselves part of the elder wave. They should not be weakening the very fundament they will soon stand on, without help, when their time comes.

Strange, also, that so few caregivers are able to picture themselves in the same situation as their own "patients". Everyone should instead be aware that this is the way it will be, it is here I will pass the years when I need help in my old age!

## A quiet mass murder

After a time in close contact with the health services, it began to dawn on me that this business of assisted death was not so uncommon after all. I remember a friend who was in good shape when he was hospitalized. But every time I visited him I found him paler and thinner. In the end, there was only skin and bones left of that strong fellow. Once he pointed at the food and explained that he was unable to eat it. The nurses carried it in and fetched it out again, almost untouched. At that point, I did not understand what was happening. But I was soon to experience it myself.

Sometime after I had been home, following the stroke, I became sick. First, I got a bladder infection, and then I was almost knocked out by pneumonia. I was admitted to the nearest hospital and was certain that I was going to die. The nurses brought food to me, but I could not ingest it. Every attempt to swallow ended in a coughing fit. My throat was still partially paralyzed by the stroke. Finally, I was able to explain that I had a stoma for tube feeding, but the nurses in the ward were not capable with that. They had to bring in a nurse from the rehabilitation ward who hooked me up to a bag of dinner. And so I gained strength again.

When I returned to The Farsund Geriatric Day Hospital, I had lost many kilos. The doctor was enraged and wanted to put me back in the hospital for fattening up. This my wife managed to avert. The solution in my case was that I was given seven or eight meals per day. Vegetables and fruit were puréed so I was able to swallow and digest them.

In this way, many elderly choose or don´t choose to end their lives. And in not focusing on the nutrition of the elderly, the health services contribute to the shortening of many lives. So one can say that there is a quiet mass murder underway in this country.

Hardly a day goes by that I do not play with the thought of death. If there had been a switch labeled "off" and "on", it could be that I would have turned it off. At any rate, I can well understand those who would open the access to compassionate murder. But the law and the medical ethics forbid this in Norway.

Nevertheless, I am not certain that I would use the switch if I had the opportunity. It is one thing to play with the thought, another to execute it in reality.

Life is a curious thing. We cling to it because we always find assurances that we are indispensable. It could be a spouse or a grandchild would miss us, but how long would that loss last?

Others, perhaps, may have such pain that they want to turn the switch off for that reason, but it is amazing how much pain one can endure. As a rule, we just have to live on.

In order to continue life, one has to master it. To master is a multiple concept. Regarding mastering, the geriatrician professor Peter F. Hjort writes: Mastering involves finding one´s way through adversity.

Often mastering will mean that one solves all the small day-to-day problems that follow from the big, unsolvable problem. It is important to see that there are gradations of mastering. One does not have to reach the top, because mastering is not a question of all or nothing, but of finding solutions that one can live with.

Mastering has clear physical aspects, as for example learning to walk again after a cerebral hemorrhage or managing all the daily practical challenges. Mastering also has crucial psychological aspects that relate to accepting life as it is and must be after everything has been done to improve it. The challenge is to be the boss of your own life and to not torment yourself or others with bitterness and complaint.

Further, Hjort says: In difficult situations, one needs good helpers, first and foremost from your own network. In mastering sorrow, receiving help, support and consolation from family and friends is often decisive.

But often there will be a need for help from society, and municipalities have both the people and the resources to assist. It is important that one does not hesitate too long in applying for help from doctors, home help services and social services when they are needed. The goal is to manage on one´s own, but many will need help getting there. And some, of course, will need continuing help.

## Good helpers

The social services office (NAV) and the technical aids center have been good helpers in my case. I have received the help that I have asked for. The municipality has however not always lived up to the responsibilities that the Norwegian Parliament and Government have assigned to it. We have had to fight for both the BPA (user-directed personal assistance) and the Individual Plan.

For my part, I had lived my former life in high gear, and have had trouble accepting the slowing down. Now I know that I can never get back to what I was earlier. It does not help to cry for what one has lost.

It happens that a stroke victim hits his wife or takes his desperation out on the furniture. As a part of the grief process, this may be an understandable reaction, but it is hardly helpful. Neither God nor your fellow beings are to blame for what has happened. Neither does it help to tell others how ill you are. That soon becomes whining. It does not relieve your suffering but adds to it.

"You are looking so good," people say to me.

"Yep, I have put on four kilos, and I´m tan from many hours outdoors. My blood pressure is like a kid´s; low, but stable. I sleep well at night and my appetite is good. I have made progress in getting around and in other skills that are significant for someone disabled."

There are many signs of encouraging progress, as many point out.

But then there is my spinning head, my dizziness! Sensory impressions from muscles and joints are to keep the mind oriented about the location of the different parts of our body and how these parts are behaving. In my case, this communication is broken, and it is likely that nerves are rejoining improperly. My body gives my brain wrong signals and an inner chaos. Strangely, this chaos - or the dizziness – is reduced when I train in a swimming pool. This, explains doctor Sigurd, is because when the body is submerged in water, the skin takes over as the primary sense organ. My skin is undamaged, and thus I experience a kind of "normalcy".

The chaos starts again the moment I am on dry land and gravity takes over. No one will listen to me when I say that the chaos is the cause of my continuing decline. My body doesn´t function any longer as it should. My left side is partially lame, while spasms and painful, involuntary movements plague the right side. Getting up in the morning is pure agony.

Could it be that I am playing with a death wish? A quick way out of my troubles. But it is also conceivable that the nerves are functioning more normally now, and are giving me messages about how poorly things really are with my body. And this is why I experience a decline.

At any rate, the situation feels unendurable. I am fit as a fiddle. Too healthy to die, but too ill to live a normal life.

## Missing the hospital

Can anyone really miss the hospital? The question seems absurd. A hospital is a place where you are admitted when you are severely ill and discharged from as soon as you are well enough. So this need, this longing if you will, should be a thing of the past. But I did feel a longing after l was discharged from Flekkefjord Hospital. I missed the happy voices from the corridors, the friends I had made \- yes, I longed even for the sterile walls and ceilings.

This must mean, of course, that I received more than mere nursing there. I was just a bundle of organs, meat, and bones when I was admitted. Nothing functioned normally any longer. Everything that had made me a person with character and personality was destroyed. But my life was saved, and gradually that weak flame that could be called my dignity was shielded and tended to. In this way, the hospital saw to it that I not only survived but that a bit of my personality was also saved from obliteration.

I have a plea to everyone involved with the Norwegian health system: Do not make the hospitals so large and streamlined that their human quality is lost. What I experienced at Flekkefjord Hospital can surely be experienced elsewhere, but if the patient becomes simply a piece in a huge machine, pleasure and dignity may easily be lost.

I did not learn to walk, and every day I experience what one doctor called "chaos in the head" only getting worse. But perhaps my awareness of my condition is just getting clearer with time? It feels painful and like a regression each day. Nonetheless, it could be progress. A lot has been lost, but at the hospital, I gained tools to manage my new existence the day I am ready for it. I just have to accept that everything takes a long time, that is to say, learn to make haste slowly. As time passes, I experience that I am being "socialized" back to life. And as this process gains pace, I find that life is worth living. This acknowledgment came to me at the hospital. Is it strange that I miss it?

## Look up and onward!

" _Now is the time to look up and onward, pal!"_

_I can still picture the nine-year-old, my oldest grandchild Peter, who with a quivering finger pointed to an imaginary goal over the foot of my bed. He visits me in his vacations, and always climbs in beside me when I have gone to bed. In the absence of that supple boy´s_ body, _I keep a picture on my nightstand. There he stands on the top of a mountain in Jotunheimen, pointing into the distance._

Now is the time to look up and onward, pal!

###

## Epilogue

This book deals in large part with dreams. Many people seem to be afraid of their dreams, that dreams represent something outside of our control. On the contrary, we should get acquainted with them. Dreams are unused thoughts, and even if they come from a worn-out brain they may be of value. Dreams give us new insight and new ways in which to grasp life. We should be grateful for the dreams and fantasies we have. A dream is much more than a castle in the air, built of brain cells. The dream gathers and transmutes our thoughts and experiences, so that something new and significant may come out of it.

Imagine that you find a stump of driftwood on the beach. It is battered by time in the powers of the sea. You bring it home to work on it. Maybe it suits to house a clock for the mantelpiece. For weeks you work on the stump, filing and sanding to make it as beautiful as it can be.

Could you then imagine throwing away such a piece, that you have put so much of your soul into? Of course not. That would be madness. It is the same with dreams and fantasies. They are reworked in our subconscious until they bear the stamp of our personality. A place where we find messages that lay forgotten.

What about boredom, you might ask. Even that is not insurmountable. Write down the hour each time that food is served, and you will have in the end a log longer than Nansen`s log from his last polar expedition. If you lack something better to do, write a crime novel.

This book is dedicated to my children, grandchildren, and children-in-law with gratitude for their support in a difficult time.

## A note on the author

In spite of being the heir as the only son, it was in the cards that I was not to take over the family farm when I was born in Frol in Trøndelag in 1937. The farm was small and not easy to cultivate, so in addition, my father drew and built houses for others in order to feed our family. Both he and my mother saw higher education as a way out of the yoke of drudgery. It was twelve kilometers from home to the nearest secondary school, and I bicycled back and forth the whole first year. It happened that I had to carry my bicycle the first three kilometers to where the snowplowed road began. The road was often slushy and icy all the way from home to school.

The next year, when I was fourteen, I moved to lodgings in town. It was a pure luxury to go to a school only fifteen minutes away. It was naturally a liberation to move to a room in Levanger, though doubtful whether such abrupt maturity was good for me.

In the hope that I might become an architect or engineer, father entered me as a science major in high school. Mother, however, saw that I had a talent for writing, and got me to apply when the local newspaper was looking for correspondents. So it came about that I earned a poor high school record, but had completed my apprenticeship as a journalist in my final year of high school, in 1956. To continue on the farm, I demanded that we should take over the neighboring property, but that proved impossible at the time.

After completing military service, which in those years was eighteen months, I was employed by various newspapers until I ended up at _Fædrelandsvennen_ , in Kristiansand, where I was able to satisfy my urge to travel. As a foreign affairs correspondent, I visited the whole Middle East, among other regions.

In 1965 my wife, Astrid, and I travelled around Europe and the Middle East for some seven months. The situation changed, however, when we became parents. We were both deeply engaged in environmental questions and desired to live a simpler life with our two boys, Johannes and Sigurd.

By 1973 I had had enough of the daily press and broke away from it entirely. Armed with a short gardening course, we settled at Torp, near Farsund. Our oldest son, Johannes, was then six, and Sigurd was nearly three. Here we grew vegetables for sale at the market and specialized particularly in strawberries. We once delivered ripe strawberries to Vadsø in the far north by Midsummer´s Eve.

The houses at Torp were in poor condition and the barn falling down. Just when we were finally coming to understand that we needed a more profitable lifestyle, we used some of the last of our funds on a theater trip to Kristiansand. There we met an old acquaintance, Tor Fuglevik in NRK (Norway´s national broadcasting corporation), who offered me a job, and thereby I came to work the rest of my career as a radio and television journalist in NRK.

Along this path, I came to be involved in all the major forms of media. The first thing I learned, in _Levanger-Avisa_ , was how to use a typewriter. It was a Remington, which required that you depress each letter a whole inch downward before it touched the paper. At that time, we used lead type and high pressure to print the newspaper. Later I learned to use 16-millimeter film, and the heavy, but dependable Nagra tape recorders that NRK swore by.

In my car, I had one of the first mobile phones, which weighed a ton. At least it felt like that when I had to take it out of the car to carry around.

Later we began using Betacam and other brands of video equipment. And now I end up using the oldest form of transferring information, namely dictation. By this means, I am transmitting impressions after the cerebral stroke that struck me in March of 2007 when I was sixty-nine years old.

I hope that my story can provide useful reading for stroke patients, their relatives, and not least health service providers. At the same time, I hope that this little book can contribute to the debate regarding assisted death in Norway, giving a patient´s perspective to the proposal adopted by Fremskrittspartiet (The Progress Party) at their national meeting in the spring of 2009.

This book is also meant to give the insight to understand the current reports of an increased number of suicides among the elderly. To a small degree, I have opened the topic that in Norway there occurs forms of assisted suicide that are more active than we like to admit.

Professor emeritus Peter F. Hjort found it striking that the cause of death for so many old people was registered as heart failure. Hjort asked a colleague to investigate these cases more closely. He came to the conclusion that most of these people had died from undernourishment or malnourishment. I guess we all know old people who are institutionalized. At the time of their admittance they were in reasonably good health, but after some weeks – just skin and bones. The nurses carry the food in to them and take it back out again, more or less untouched. The employees do as good a job as they can, but time and resources fall short. The framework for the use of resources is set by others, who are often not in direct contact with the ward. It may be that many old people stop eating because they want to die, hence reducing the need for beds. But is it always like this, and do we want it to be like this? We need to have that discussion now, whether or not we call it active or passive assisted suicide.
