

## Loretta's Days

### The Alzheimer Chronicles

A loving and devoted husband's recounting of his experiences in loving and living through

"The Long Goodbye"

### Harl Barnett

Copyright 2017 Harl Gilbert Barnett

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever including Internet usage, without written permission of the author.

### Contents

Foreword

About the Author

1 The Nightmare

2 The mystery of our brain

3 The Spring of 1940

4 Sky-blue eyes and an infectious smile

5 Obedience grew!

6 West to Arizona

7 I almost lost Loretta in Globe

8 "You're the wind beneath my wings..."

9 Before Alzheimer's – Always a smile

10 The 'Early Signs' – We just didn't recognize them!

11 Soon after, things began to fall apart!

12 December 2000 – The Chronicles begin

13 2001 – How much longer am I going to stay before I can go home?

14 2002 – Soon "normal' days become entirely different

15 2002 – And things go really bad! But the Lord makes the way...

16 2003 – I've learned to not try to understand these moments...

17 2004 – One day it's encouragement, the next it's total depression!

18 2005 The 'Long Goodbye' comes to an end or does it?

19 I believe Loretta is still very near!

20 The dream

Epilogue

Foreword

I came to know Harl and Loretta Barnett in the 1970s as a young just graduated Murray State University, journalism student. The Barnett's ran the Tribune-Courier in Benton, KY and along with Jeanna Houser, the editor they gave this young reporter a job.

I learned a great deal from all of them during my tenure yet the most important thing I learned was not about journalism it was about the lessons associated with understanding human nature, compassion, loyalty, and duty.

This story of Harl Barnett's devotion and care for his beloved wife speaks to my belief and probably many of our beliefs that there are certain people destined to be with one another throughout all eternity.

Ann Landers aptly explained that _"Love is a friendship that has caught fire. It is quiet understanding, mutual confidence, sharing and forgiving. It is loyalty through good and bad times. It settles for less than perfection and makes allowances for human weaknesses._

Love is content with the present, it hopes for the future and it doesn't brood over the past. It's the day-in and day-out chronicles of irritations, problems, compromises, small disappointments, big victories and common goals.

If you have love in your life, it can make up for a great many things you lack. If you don't have it, no matter what else there is, it not enough."

This is a love story, yet it is also a story of heartbreak and an enigma wrapped in a mystery told in the words of a man smitten and devoted to truly the "love of his life." Even after all these years, there is a paranormal aspect to this relationship that defies conventional explanations.

Harl and I both hope the reader of these chronicles will help a caregiver understand what lies ahead in the hell associated with Alzheimer's and the challenges to be faced. Look for the italicized _To Caregivers:_ throughout for tips and explanations.

These chronicles are not for the faint of heart rather they are for the Caregiver faced with what is about to be a journey into the depths of the unknown with each day revealing a new behavior that challenges them, their family and the hopeless victim of this terrible disease.

Intentionally, I have edited little of this material. I came to believe as I read this work that Harl needs to describe and tell his story in his way. I have let him do so as much as possible.

In these pages, you will find the wisdom and experiences of a man so devoted and loyal that he came to personally understand what President Ronald Reagan called "The Long Goodbye."

L. Darryl Armstrong PhD

(www.ldarrylarmstrong.com)

June 2017

Harl Gilbert Barnett

Harl Gilbert Barnett was a product of the 'Great Depression' of the 1920's and 1930's that proved human survival is possible in the direst of circumstances. He was born on January 6th, 1922 in an abandoned corn storage building belonging to the farmer by whom his dad was employed as a farm laborer from sunrise to sunset at fifty cents a day.

Harl graduated high school and briefly attended Murray State Teachers College (now Murray State University). Hitler had invaded Poland beginning what was to become the worldwide conflict known as World War Two.

Harl, at nineteen, left school at the end of the first semester to seek employment hoping to earn enough to return better financially able to continue. Then Japan bombed Pearl Harbor and our country too was now at war. And Harl's future was now well defined. He served in the Pacific theatre, was returned to the States in March 1946, became interested in broadcasting and employed as writer/announcer first in Mesa, Arizona. He worked for several Arizona broadcasters, returned to Kentucky in 1962 and employed at WCBL in Benton, purchased a floundering weekly newspaper and growing it from 1100 subscribers (some paid) to almost 7,000 (all paid), revenue from an annual gross of under $5,000 to several hundred thousand dollars.

Now at 95 Harl is spending his days on his sons' farm in northwest Arkansas.

Chapter 1

### The Nightmare

_The ring –_ _The search for the ring brings mysterious, hair-raising, heart-pounding surprises and revelations, the most important and endearing are notes of love found at exactly the most appropriate times, leading all to believe, though unseen, she has not gone! (Read on for some shocking absolute truths.)_

The 13th of April in the year of Nineteen ninety-six was our 50th wedding anniversary. We would have celebrated our 60th in barely 4 months when she died. And there was a promise made on our 50th which now cannot be fulfilled. Or can it? Another promise, made several years later, will no doubt be kept and this promise brought a smile as she remarked, "That's the sweetest thing you ever said to me." More on that later.

First, let us delve into the paranormal in the hope that some of the events to come can perhaps be explained.

I, without an ounce of training in psychiatry or psychology, with nothing more than curiosity and an abundance of time to think, have concluded that our 'mind' is much, much more than we have concluded.

Since my Loretta's demise, and in a few instances before, there have been mysterious occurrences that rational thought cannot understand.

One night, quite some time after the hell of Alzheimer's attacked Loretta and shortly after we had retired, I was nearly asleep when I heard her say, almost in a panic, "Oh God, what's happening to me!?"

How much later I don't know, I sprang out of bed also in a panic. I can't begin to explain, but my mind had become Loretta's mind! I was terrified!

I seemed to be in total darkness, totally disconnected from everything I ever knew. Nothing remained which I remembered. No friends, no familiar surroundings, nothing!

I could not determine where I was or how to find my way and no one to help. I seemed to be a lost soul floating around in horrifying darkness when I suddenly sprang from bed with heart pounding and ready to scream.

It was then I began to realize it was a nightmare and that I had, seemingly, been transposed into her psyche.

Later I considered trying to write her story from her Alzheimer tormented mind but concluded, even if I could, it would have driven me insane.

But, before we examine any of the other irrational events let us explore some possible 'mind' explanations.

Chapter 2

### The mystery of our brain

First, it may be concluded that the organ which we call a 'brain' is similar to a computer. It is programmed to operate our physical apparatus (lungs, heart, etc.) while we are totally unaware and unconscious.

While we sleep, the computer/brain sustains life by maintaining the necessary functions. But, how is the computer/brain programmed? Who or what programs it? We do not consciously do it. We do not think about winding it before we sleep. Our body naturally grows tired, we are sleepy, and without giving it thought we become unconscious of all surroundings, and the brain/computer assumes control. If not, our body dies!

The preceding has been in my thoughts for years, but only after watching my Loretta suffer the torments of Alzheimer's hell has it become more interesting and possibly, just possibly, more provable.

If the brain/computer is programmed/operated by the mind, who, but the Universal Intelligence, our Creator could control our mind?

Is our mind the direct open connection to our Creator? Does this explain how our Creator/God knows our every move and thought? It has been said He not only knows when the sparrow falls, but He is also there when it falls.

More importantly, is sleep the perfect parallel of death? We die/fall asleep and does that Universal Intelligence/Creator/God sustain us in spirit until He awakens us?

As we continue with Loretta's story we shall see evidence the preceding could, without a doubt, be true. Like computers often do Loretta's brain malfunctioned and her mind continually tried to repair it. In failing to correct the problem her frustration often brought tears.

(Throughout this chronicle I will leave notes for all caregivers to consider.) To Caregivers: Be aware that the victim of Alzheimer's may completely understand what you are doing or saying, but is unable to respond. Never talk around them without including them. Don't talk about them thinking they do not understand.

This story, like that of Homer's Odysseus, the King of Ithaca and Greek leader of the Trojan wars who wandered ten years before reaching home, is the story of Loretta's years of wandering before reaching home. Some, including myself, thought her day of joy and celebration came and she went to her heavenly home on the 9th of December, in the year 2005.

However, following revelations suggest otherwise. There are several instances to suggest she may have had unfinished business to care for before the journey, and the search for 'the ring' had some amazing and, more than once, terrifying results, as will be seen later.

Could a promise I made to her, only a few years before, be the cause of coming events? The promise will be kept even though yet unfulfilled.

Chapter 3

### The Spring of 1940

I first saw her when she was fifteen in the spring of 1940. She had wings on her feet and fire in her sky-blue eyes, her head tossing the honey blond hair in the wind. She was prancing down the path home from band practice with several young girls, whom I didn't see. I saw her only. No chance to speak. On following weekends, with friends, we drove around Princeton, KY hoping to see her, but failed. Had I seen a mirage? Was she only a dream?

I didn't see her again until the Christmas basketball tournament of 1940-41 at the old Kuttawa, KY High School Gym. I was home from Murray State Teacher's College for Christmas break, when I saw that honey blond hair directly in front of me. The lights reflected from her hair almost as if it were about to catch fire. I learned it was Loretta. At first, it was the natural animal attraction. I did not learn I wanted to spend my life with her until 5 years later, after the war. That's when I saw the real Loretta. I saw her spirit, her heart, her love for life and her compassion and love for others. Her true soul and spirit was so obvious one could not help but love her.

Now she has been my life for over 59 years (almost 65 if counting the chance meeting at the basketball tournament).

But my heart has been ripped from my chest in her final 5 years, watching her suffer the torments of Alzheimer hell, on a feeding tube because of a stroke, which rendered her unable to say more than "I love you," which she would repeat over and over.

She once asked, "Please help me," which ripped out my gut and caused indescribable pain. She always thought I could fix anything, could overcome any difficulty. This time I couldn't help her.

But the comment she made, earlier, when she first realized something was wrong, will haunt me until I die. She turned her distraught face to me and said, "I wish you could make it like it used to be."

There is no possibility this wound will ever heal!

I don't know a reasonable place in her story to insert this, but it must be a big part of her story because it makes me wonder if she is truly gone. On January 11, 2006, exactly one month after we interred Loretta I was up at 4 a.m. at the computer rewriting, editing, and recomposing the events of January 2002. When, without any reason, the door to the computer room gently opened approximately 2-3 inches and then slowly closed. It was so unusual, I opened the door to determine who was in the hall. Of course, I 'saw' no one. Throughout the writing of her story, I frequently feel her spirit watching my every move, but to 'see' a door open and close is not merely a 'feeling.' In her story, which follows we'll see other mystical indications that she is still near.

Chapter 4

### Sky-blue eyes and an infectious smile

April 13, 1996 was not the beginning. Nor was it the end. The end was December 9, 2005 a little more than four months before I will express my devotion again and play our special song.

So, since April 13, 1996 was not the beginning let's look back to the real beginning.

Even though I was soon to be 19 my life began that Christmas Holiday in 1940. She was 5'7", skinny as a beanpole and weighed only (as I later learned) 109 pounds and, also I later learned, she was only 15. But I saw something in those sky-blue eyes and the infectious smile that was unmistakably unpretentious honesty. Though I did not then know, I was hooked.

I somehow learned her telephone number (yes, there were telephones in 1940) and asked if I could see her. We dated very few times but a minor event called World War II soon divided us, and I was involved in other parts of the world for almost five years.

I was on the island of Okinawa when Japan surrendered. I was returned to the States and had convinced myself the smart thing to do would be to take the time to readjust. Don't rush into marriage. Take time to adjust! Because marriage, to me then and now, is a solemn and holy union that is "till death do us part." Take lots of time I told myself. Adjust! Be sure. Use due caution. Don't jump into a lifelong situation from which there is no retreat. These suggestions I made to myself, but...

I received my discharge on March 11, 1946. Thought it over, took all the time between March 11 and April 13, the same year. Quickly adjusted and in a month was married.

I paid the preacher $20 from my $300 mustering out pay and we embarked on life's journey with no job, no money, and no place to live. Only love.

To this day I don't understand what she saw in me. No security. No future. No job.

Chapter 5

### Obedience grew!

She blessed many in the years before she stood in the gates of Alzheimer's hell. There was the time, soon after marriage, we were in my father's backyard demonstrating our dexterity with a small rifle. Since I had medals (not hero medals but 'expert marksman') from the war, my father being of the "old school" squirrel shooting class, wanted to show off to my new bride.

He placed a copper penny on a fence post, retreated about 20 paces and handed me the gun. I insisted he shoot first. He did. He missed. He gave me the gun. I missed. Loretta laughed until there were tears. So, I handed her the gun. You've already guessed. She aimed, fired and the penny disappeared into the tall grass. My respect and obedience grew considerably and never diminished.

Since there was no available employment in our area, none which paid enough to raise a family, I decided we would try the factories in Detroit. My brother, already in Detroit, found us a small apartment, we moved, I applied and went to work on the assembly line of Chrysler. Payday came, and my brother suggested we join the other factory gang at the nearby bar, cash our meager check and have a beer. I did.

Loretta was waiting alone for me at the apartment. I could see a spark of fire in her eyes as she calmly announced that if I wanted to go to a bar and leave her alone again, it would be alright, but she explained she could play the game and could likely play it better than I. I got the point. Remember the 'obedience' thing above? It quickly grew.

Loretta also began to grow. We returned to Princeton, KY where Marsha, our first born, came into the world.

To make the trip my brother and I put together a hundred dollars to buy a worn out 1936 Dodge sedan with treadless tires so smooth you could almost see through them. We followed the Wabash River south through Indiana pouring quarts of oil in the top of the engine as it leaked out the bottom. When a tire became flat, we would change to the spare, drive to the first service station; have the flat fixed, drive a few miles, another flat, another service station. Loretta, pregnant in the back seat, wasn't bothered. In fact, she laughed with us, at us, and about us. She said it had been fun! I was pleased she enjoyed it.

In looking back, I now believe our Universal Intelligence, the God/Creator who does not make mistakes, who holds the entire universe and all creatures in His hand, took over our lives. I believe He has a plan for each of us. He knows our destiny from our beginning. And there is a purpose in everything He does or causes to occur.

Chapter 6

### West to Arizona

I saw no future in the area. I did not like factory work, much less the city life of Detroit. I tried farming my dad's farm near Kuttawa, KY and one hundred acres rented land on the banks or the Cumberland River where my brother and I produced a miserable corn crop (mostly cockleburs and weeds).

Loretta and I lived in a tiny and timeworn abandoned farm house, on my dad's farm, in which we fastened newspapers and cardboard boxes to the walls to prevent the snow from blowing through the cracks. There was no indoor plumbing, only a cistern of rainwater caught running from the roof.

Of course, no indoor plumbing meant an old-fashioned outdoor toilet. Loretta never once grumbled or complained. She was happy with our new daughter and a scruffy little dog my dad brought her, which she named Tippy because of the bright white tipped tail. She adored the little pup.

I don't remember what we did for food. We had no money, no car, nothing.

So, now that unseen power that rules our lives seemed to take over.

My mother was diagnosed with a lung disease for which the doctor prescribed a move to Arizona. My dad chose to head west and I, with certainly no future in farming, decided to head west with them.

However, I knew I was venturing into the unknown and persuaded Loretta to stay with her mother until I found employment in Arizona or returned. We left her crying. And, in over 59 years, that was the last time I left her behind.

It was in 1948 I found work as a writer with a small radio station, KARV, in Mesa, Arizona. My duties were, among other things, to write a script for a Sunday classical music program, which I also later presented on air. Only a few months after I began doing the classical music show the owner came in, turned off the power, locked the doors and quit. Said he couldn't endure anymore! I never was real big on classical music!

My Dad and mother returned to Kentucky, retrieved Loretta and our baby daughter Marsha brought them to Arizona and, for 15 years, we enjoyed climbing Arizona mountains, exploring every inch of the southwest, including the impressive Grand Canyon, parenting two more children.

Our daughter Brenda was born in Safford, AZ where I was an announcer/salesman at $55 a week, and our son Geoff born in Globe, AZ where I had been named station manager at KWJB.

Chapter 7

### I almost lost Loretta in Globe

I almost lost my love in Globe, AZ but God had other plans.

As manager of the local radio station, I was entirely responsible for its performance, including keeping it on the air. The night before our son, Geoff was born, the equipment failed, the station went silent, and Loretta rode with me to check the problem.

I foolishly opened the transmitter door, received what was estimated to be about 20,000 volts, was thrown across a 15-foot room against the wall and was temporarily paralyzed with the shock.

Loretta witnessed the event, immediately went into premature labor, was rushed to the hospital, discovered to have a ruptured appendix which was removed and then gave premature natural birth to our son the following day.

Her path 'home' was almost ended that very day, instead of December 9, 2005.

After wandering around Arizona for 15 years with her vagabond mate, and now with three youngsters, we returned to Kentucky in 1961.

Over the years, she walked by my side into the radio business, a restaurant, ten years as newspaper editor and publisher, sixteen years living on the rivers as operators of a sternwheeler passenger boats while living on boats (even though she never learned to swim and was very much afraid of water).

We cruised by paddleboat the Mississippi River from Dubuque, IA, the Ohio River to Cincinnati, the Tennessee River from end to end and a considerable stretch of the Cumberland River.

We experienced several near-tragic situations on the rivers. We were caught in a tornado at Pickwick Lock and Dam in Alabama. Winds bearing six-foot waves on Kentucky Lake scared us. Our steering failed while coming down the Ohio River at flood stage, and an engine failure below Barkley Dam occurred with the water running wild. Loretta took it all in stride because I like to believe, she trusted in me.

After giving up the excitement of life on the rivers, I returned to radio at WCBL radio in Benton in 1994 to remain until her passing.

As I write her story, I wonder when the train will actually depart for as her story reveals there are indications the train has not and will not leave the station until she gives the signal.

Chapter 8

"You're the wind beneath my wings..."

How many women would follow a mate into such craziness? Does anyone wonder why I worship her?

Even now I feel her presence, looking over my shoulder, as I write these words. I know she knows.

But, there's much, much more to be told about this amazing woman before she reaches home. And, I firmly believe, as we read in Proverbs 3:6, "In all thy ways acknowledge God, and He shall direct thy paths." Because she was a strong believer, I believe He directed her way, as well as leading mine.

April 13, 1996 was not her day even though it was our 50th anniversary. She was deeply involved in her endeavors around the house as I performed my regular morning radio program on WCBL.

As a part of my program, I salute and congratulate those couples reaching another milestone in marital bliss. I wrote and recited on the air a special note of love especially to her and played the song by Gary Morris "You're The Wind Beneath My Wings."

The lyrics, in part, suggest that "I am nothing without you, but with you, I can soar higher than an eagle because you are the wind beneath my wings." The message I laboriously wrote and recited on my program read:

" _God grants His blessing to each of us in different ways. To some, His blessings are riches of monetary wealth—money, property or things. To others, He gives extraordinary ability to sing or make music or with beauty or superior intelligence. But there is no greater blessing than to be given a friend. No money or wealth, absolutely nothing can equal having just one true and loyal friend. And I have such a friend, but much more than a friend. She is a partner, a confidant, a defender, a helper, a supporter, a shield. And she accepts me as I am, overlooking my weaknesses and flaws in character or behavior._

At approximately 2 p.m. tomorrow afternoon that friend, that buddy, that wonderful person has been a part of my life for 50 years.

It's a far greater blessing than fame, fortune or glory and I thank God for that blessing. So to a wife who has shared my life, in memory of 50 great years, I play the following song in everlasting love."

The song, as mentioned above, "You're The Wind Beneath My Wings", was the best I could do.

She did not hear it.

She did hear from others who had been listening and when I returned to her, afterward, she was almost in tears. So I promised I would do it again for her on our 60th anniversary, which would have been April 13, 2006. The preceding promise I kept. This time her spirit will hear.

There's another promise which I must someday keep and it is impossible to forget, but more on it later.

Our life was a game. We enjoyed each other. We did everything together. Even after a half-century of marriage we often spent hour after hour playing gin rummy or some other silly game.

I almost broke down when, a few days after the final services, I found the yellow pad on which we kept score of the last gin rummy game.

I could never wait to return to her after work. I never accumulated any monetary wealth because money was never a motivator for me. She was my wealth. And, even though we always seemed to be 'broke,' never once did she ever appear to be worried about the future. Never once did she complain that we had less than our neighbors.

When she needed a new dress, suit, coat or whatever, in most instances she made it, always explaining to me she could never find a proper fit in a store. I never fully believed her story.

Loretta was unlike any other person I've ever known. That simple honesty I saw in her eyes at the Christmas break in 1940 never left her.

Chapter 9

### Before Alzheimer's – Always a smile

In 1976 I acquired an old rusted-out 110-foot sternwheeler boat licensed to carry 150 passengers which I thought, since none existed on Kentucky/Barkley Lakes, would be a break-even venture even perhaps profitable.

I was wrong.

We worked hard simply keeping it afloat and the two 4-cylinder diesel engines (held in place with baling wire) running. We lost money daily, but we had a ton of fun. Loretta had the assignment of popping corn and smiling at the customer/passengers. I had a license which delegated me as captain, but that meant nothing because the corn-popper was also the Admiral.

The Admiral was also First Mate and Chief Engineer. There were times when she was indispensable. I steered in the bow, and she popped corn at the stern, just in front of the engine room, approximately 60 feet apart.

So, since I could not leave the wheel when something in the engine room malfunctioned, she quickly became an the engineer. Once, when the forward/reverse shifting mechanism failed, we agreed on a signal from me to suggest 'forward' or 'reverse.' She was to stand in the engine room, with hand on the shifter, I would hold up one finger for forward, two fingers for reverse and a clenched fist for neutral.

She never uttered a word to suggest disagreement. The only problem arising from such an arrangement came from the observant passengers when I held up one finger.

She also would put on quite a show if danger appeared on the horizon. Remember, she is 60 feet from the pilot's wheel, and I'm at the wheel. If a situation arose, that seemed to pose a danger (and she, not able to swim, watched carefully for such) she would be at my side in three seconds, sometimes in a life jacket.

Of course, the passengers were hardly calmed by such actions, but I could never persuade her to remain at her Admiral post!

After several misadventures, we sold the boat for its indebtedness to a couple in Jeffersonville, In. who generously allowed us to help run their boats for the first real money we could spend since buying the boat in 1976.

I helped with the boats while Loretta answered phone calls, made charter bookings and acted as hostess beginning in 1986.

We didn't like apartment living, so I purchased a mahogany wood 41-foot diesel-powered floating antique and Loretta moved aboard. In the winter of 1988, with the Ohio River flooding and running wild, we decided to dare and risk coming home. Not a very wise decision, but Loretta never doubted I could do it. Our daughter, Marsha, made the trip with us, but has vowed: "never again."

Chapter 10

### The 'Early Signs' – We just didn't recognize them!

I painfully regret not recognizing the early onslaught, not that I could have changed God's plan, but perhaps, just maybe, I could have hugged her more or even could have been more attentive to her needs. I continually look into those days and wonder if I should have done more.

We made anchorage near Murray, Ky. with nothing to do, so daughter Marsha and Loretta began a business in Murray constructing canvas products for area boaters. Marsha recalled how Loretta began to exhibit confusion with sewing, even though she had been proficient at the art for many years. The simple task of threading a needle became overwhelming, even bringing forth tears. I thought she simply needed glasses to help her see.

I was wrong.

I began to recall how, three or four years ago (in the late 90's), she would repeatedly ask me to verify numbers, amounts, prices, dates and times when she attempted to relate an incident to others. She always seemed to misquote prices paid or exaggerate in some way, then turn and ask me to verify. I initially assumed she was just employing the art of embellishment for effect.

Again, I was wrong.

To caregivers: Pray early, pray often and pray fervently for patience. I lost mine occasionally and could not face myself. Self-hate comes easily when you lose patience with one so helpless and lost, someone so desperately in need of love and hope.

God's hand came into play, again. I have never been real big on insurance, but there was a knock on my door in the summer of '98 by a representative of a Life Insurance Co. who suggested he wanted to talk about insurance. I would never have asked a salesman to sell me anything, but I felt 'driven' to ask about Long Term Care Insurance.

He conceded the company he represented just happened to offer that type, also. He entered, gave his speech and I bought the package which came into effect November 18, 1998, approximately one year before Loretta developed Alzheimer's.

Our God works in mysterious ways.

I think it was in the spring of '99 I remembered Loretta had not seen her sister, in Durant, Miss. for quite some time and suggested we visit. (Her sister suffered from Parkinson's and Alzheimer's and was in a nursing home.)

Very soon after the visit, I began to notice significant changes in Loretta although she had not been diagnosed as suffering from Alzheimer's at the time.

In the summer of '99 we, with Marsha, drove to Florida to visit Todd (Marsha's son/our grandson). Loretta became very sick when coming home. She complained of pains in her neck and right side. Upon arrival home, we made an appointment and met with a woman specialist in Murray who performed an ultrasound and found a benign growth in her uterus. It was removed.

We saw a heart specialist who found a 90% blocked artery and they installed a stint.

We saw a neurologist who did a brain scan and found no problem.

The ophthalmologist found cataracts in both eyes and removed them, and he thought she was having problems with vision and fitted her with glasses only to learn that vision was not the problem. Recognition of what she was seeing was the problem!

And she was fitted with hearing aids. However, nothing really improved.

We visited a Family Practitioner at Murray Hospital, who, among other things, asked Loretta to draw a circle and pretend it was a clock, then put in the numbers and bring the hands to 11 o'clock. She drew the circle, putting numbers from 1 to 5 properly inside the circle and the numbers from 6 to 12 outside the circle.

He asked her again to draw the clock's hands indicating 11 o'clock. Loretta looked totally confused, gave me the pencil and paper, and asked me to do it for her.

Our family doctor, in Benton, KY had been regularly giving B-12 and hormone shots. After the revelation of the physician in Murray, we made a regular visit to our Benton doctor's office in November '99.

When I related our recent experiences with the doctor in Murray, our Benton doctor announced (in the range of her hearing) that she had "early Alzheimer's." She put her hands to her head and cried. I held her and also cried.

She has just embarked in the final stretch on her way 'home.' And the journey is to be hazardous, lonely and heartbreaking.

Chapter 11

### Soon after, things began to fall apart!

Soon after our local doctor's announcement, things began to fall apart.

Hardly ever can she put on her clothes properly. A blouse or shirt is backward or inside out, or both. Frequently she will try to put on several layers. Two pairs of pants, two shirts and never can she properly hang anything in her closet. She has mistakenly found a piece of my clothing and put it on over her own. She can seldom find what she wore last. It just disappears to be found later in some unbelievably strange place.

Her diamond solitaire ring was appraised in the 1970's at $5,000, just vanished and the search for this ring produced some unbelievable revelations about my beloved's ability to still communicate with me. That part of her story will be revealed later.

When I leave each morning at 5:30, to do my radio program, she is terrified. If she wishes, I take her with me. At the station, she sits in the corner and silently watches. I look at her and wonder if she is really behind the blank expression.

One morning she decided to stay at home, and as I was in a stretch of open-mike programming she called the station and left a message for me "not to forget to hurry and take her home."

Since I knew I had left her home and that we had no appointments or scheduled places to go I was bewildered. I called as quickly as possible and asked, "What do you need, mom?"

She, quite irritated, informed me, "I'm tired sitting here in this place all day. Come take me home!"

I informed her, "You are home, mom."

"Oh, I am?" "Well hurry home."

It has been quite some time since she has been able to do anything in the kitchen. Turning on the proper stove eye or manipulating the oven controls is completely beyond her comprehension. Consequently, I do all the cooking. I do the laundry. I iron my shirts.

Once upon a time, and I never realized how wonderful it was then, I would hear her singing in the kitchen. She sang beautifully in a Patsy Cline style. But she doesn't sing anymore, anywhere. The fact is she can't turn on the radio. I must turn it on before I leave each morning or she is devastated.

She seems to feel that while she can hear my voice (on the radio), she is not entirely alone.

Marsha found her a toy poodle. It occupies her every thought. Loretta is like a little child; she cuddles the dog constantly, and doesn't want it, or me, out of her sight. If I go into another room and I'm absent for a few minutes, she looks for me.

Chapter 12

### December 2000 – The Chronicles begin

I regret I did not begin to keep a daily journal until December 5, 2000; I suppose because I felt compelled to devote all my time to her and, too, I was in a state of disbelief. Below is the recounting of many of those days. In these words, you will see and hear the agony and pain of what becomes truly a long goodbye.

5 DECEMBER, 2000

Loretta stayed home with Mandy (the poodle) today. When I returned I found every door locked, every light on, blinds closed and she's terrified. I also thought she was losing the ability to hear. I must repeat everything. Later, much later after fitting her with aids, I learned she was hearing but didn't know how to answer.

10 DECEMBER, 2000

5:30 p.m. and Loretta is in bed having suffered a severe headache throughout the day. At least 6 aspirin, Ibuprofen or Benadryl taken and nothing helped. She ate a bowl of Cream of Celery soup, nothing more all day.

11 DECEMBER, 2000

Loretta was in the bathroom last night, so I crawled into bed. I was falling asleep when I realized several minutes had elapsed since I had heard any movement. The clock indicated it had been about 20 minutes with not a sound from her. I approached the bathroom door and asked if she had a problem. She answered no, through the door, so I returned and sat on the bed trying to collect my thoughts. As I began to go back to the bathroom, she emerged excitedly, carrying the bottom half of her pajamas. I asked again if I could help and she sat on the bedside crying and explained that she had been trying to get the legs of her pajamas straightened out. I discovered the legs were opposite (one turned inside, the other outside) and she was, each time, reversing both. She was utterly bewildered.

12 DECEMBER, 2000

1:30 p.m. and Loretta is asleep in her chair with the dog in her lap. Loretta elected not to go with me to the station today. I think she's embarrassed to be seen by the staff. I did my program, and came home to find her nervously pacing with the dog in her arms. I reassured her that all was O.K. and she seemed to relax. Later, as I was preparing lunch, she asked if she could help. I suggested she get water. She took a few steps, picked up a cloth and began to wipe off the counter. I asked about the water, and she answered that she had forgotten. I've doubled her anti-depressant thinking that perhaps depression is causing the headaches. She now cannot read or understand anything on TV and frequently asks me to explain what was said or done. Consequently, she simply gives up trying and falls asleep. It's impossible to imagine that one who was so alert only a year or so ago could suddenly become so confused.

13 DECEMBER, 2000

This morning my car wouldn't start, and I called a wrecker to tow it to the Ford dealer. When I returned home, Loretta informed me the phone had rung, and she couldn't find it. I checked the caller-ID and discovered that our neighbor, Debbie, across the street had called after witnessing the wrecker taking my car away. Now things began to become strange. Loretta asked me what Debbie wanted. I explained that Debbie saw the wrecker pulling away my car and Loretta asked, "What wrecker"? She had witnessed the entire event just 30 minutes earlier and had forgotten. Then I noticed the kitchen was in total disarray. She explained that she was trying to devise a box for the dog to relieve herself without going out in the cold. Loretta had found a little basket into which she was attempting to insert a pan which, Loretta explained, could be emptied into the toilet. This endeavor has been on her mind for a day or so.

20 DECEMBER, 2000

Each day brings slight deviations. She continues to find it harder to dress. Things go on backward, inside out, half on-half off. I need to remind her to bathe. I came home yesterday, pulled into the garage and found the door into the kitchen locked. I knocked which caused the dog to bark and Loretta unlocked the door.

Later I took Loretta and the dog to the store and upon returning she asked: "How are we going to get in since Mandy (the dog) is not inside to open the door?" Apparently, she thought the dog's bark was opening the door when, in fact, Loretta had unlocked the door. I never know what to expect when I come home.

Recently, upon returning home, I found her in a panic because somehow all the burners on the kitchen range had mysteriously been turned on high. She was frantically filling every available pan with water to extinguish the fire. (Imagine the chaos if I had NOT come it at that moment!) I asked why the burners were on and she answered that she didn't know. Then I noticed the house seemed cold and found the furnace thermostat turned off. I asked 'why' and she said she didn't remember touching it.

I am continually bewildered by her questions. Furthermore, she seems to understand a suggestion, but does precisely the opposite. She is becoming more like a little child and doesn't want me out of her sight. She follows me wherever I go and repeatedly asks if she can help.

21 DECEMBER, 2000

Loretta went to the station with me at 5:30 this morning. We came home at 10, sat down to relax and she asked, "Is this where we slept last night?" She asked the same question again a few minutes later.

After the noon hour, I told her I needed to get a haircut. She began to become very agitated and said she felt sick, asking, "Can I go with you and sit in the car?" I explained it was too cold to sit in the car.

She looked as if she were going to cry and told me she didn't want me to leave her because she was afraid. She asked if she could ride to the barbershop, wait with me and then go home. She didn't realize that she is home. (The haircut was postponed.)

I feel so badly for her. She's so terribly confused, can't finish a thought and concludes every attempted statement with, "Oh never mind. I forgot what I was going to say." I doubled her Aricept today. It's heartbreaking to see a bright and always cheerful person only fade out and leave the body. I keep wondering if, in fact, she is still in there.

22 DECEMBER, 2000

Loretta chose to go to the station with me this morning. Sitting in the corner soon after we arrived she became sick. Fortunately, the program schedule, while the news was on in simulcast, allowed me to take her home. I left her at home, returned to the station and finished my shift, and when I returned home at 10, I found her still on the couch. I prepared some chicken soup at 2 p.m. which she seemed to enjoy. It's very strange that she still does not recognize this as our home.

She regularly comments that something has changed; furniture rearranged or "Who owns all this?" After I had come back, this morning, she looked around the room and asked, "Who's missing?" Then, "Who was here earlier and went to work?" I decided she was referring to me.

Later she was asleep on the couch, and I was half asleep in the chair when she suddenly sprang upright from the sofa with a wild and frantic expression, furtively looking in all directions then fixing her eyes near the base of my chair. She's so terrified she can hardly speak! Finally, pointing at the bottom of my chair she excitedly mumbles about something red and hot.

I nearly went through the ceiling. I couldn't imagine what was coming from beneath my chair.

Then she began to cry and asked, "What in the world is wrong with me?" I tried to console her by saying, "Everything is fine. You're just waking up confused." Then, she again asked where we were. "How long have we been here? Who changed the room around?" (It has been the same for years.) I gave her a couple of pain pills, and we went to bed.

23 DECEMBER, 2000

I must do my regular Saturday program, and she decided she doesn't want to be alone even though it's 7:30 a.m. and daylight. So, it's not the dark she fears. It's aloneness. So I helped her dress and took her. I'm scheduled for three hours on the air, and after the first hour she asked if I could call our daughter, Marsha, to take her home. I explained that Marsha lived 40 miles away in Tennessee.

Loretta said, "Oh I thought she lived just around the corner." I also pointed out that Marsha would not be visiting today, as she normally does, and Loretta asked, "Marsha who?"

26 DECEMBER, 2000

Yesterday, Christmas Day, we had a fantastic dinner with Marty and Brenda (our daughter) and a couple dozen of his clan. I felt so badly for Loretta. She was like a lost soul, seemingly unable to hear, unable to recognize old acquaintances and unable to communicate. She has decided I may be her brother. I awoke at 12:30 a.m. with a need to visit the bathroom. I noticed she was awake, and then unexpectedly she asked, "You're not my brother, are you?"

"What?" "You're not my brother, are you?"

"No, of course not, I'm your husband and have been for 55 years. You have no brothers, only a sister."

"I don't have a brother, how about Geoff?"

"Geoff is your son. You have, or rather we have two daughters and one son."

"Oh!"

I suggested she remain at home, this morning, as I had to work for a short time but would be back very soon. She seemed to accept the idea without becoming upset. I returned at 10 and, while fixing breakfast for both of us, she asked, "Now where is it you work?" (I've worked at WCBL for over 7 years), then, while in the living room after breakfast, she asked, "How long have you lived here?"

I explained, "You and I have lived in this house since 1976, except for the years we were living aboard our boat."

"You mean I live here, too?"

"Yes, it's your home. You and I live here together. I have been your husband for 55 years."

(She's not convinced I'm her husband and she wonders why we live here together.)

29 DECEMBER, 2000

She has her customary headache. I elected to take her to our Benton doctor to see if he could help. Her problems seem to emanate somewhere behind her left ear and progress to her forehead area.

Our doctor found as he put it, some tender spots, diagnosed her trouble as Fibromyalgia and gave her a shot of Cortisone and Novocain directly into the sore spots. Incidentally, she has lost 3 pounds since visiting the doctor in Murray 3 weeks past.

Sometime around midnight, this morning, I was awakened by her turning and tossing. I lay awake until 2:30, got up and was shaving when she walked near me, stared for a moment, then asked, "Doesn't your mom work here sometimes in the early morning? (No one has been working here, and my mom has been dead for many years).

I'm at the computer in the afternoon as she sat watching me. She asked, "Are you going to spend the night with us?"

"Of course," I answered, "just like all the other nights. And, too, I am a part of us."

30 DECEMBER, 2000

She has now begun bracing chairs against all doors when I'm away. This morning at 5:30 I heard her calling for me. She had gone to the bathroom and was lost in the hall unable to find her way back to the bedroom. She seems to have become very sensitive to cold. Even though the room temperature is very comfortable (72 degrees) she wraps herself in several layers of clothing, wraps herself in blankets and still complains of being cold.

31 DECEMBER, 2000

It's almost 4 p.m., and we were sitting in the living room, watching TV when she suddenly said, "I'll have to go home soon. It's not right for me to stay here with you."

"Why is it not right? I'm your husband."

There was a moment of silence, then "Do we have any papers or anything in writing?"

"Of course," I said, "They're in the other junk we've accumulated for 55 years."

"Are you sure?"

"Of course, and this is our home."

"O.K., if you say so. I hope it's that simple."

We have had variations of this conversation several times.

Chapter 13

### 2001 – How much longer am I going to stay before I can go home?

1 JANUARY, 2001

When mom woke this morning, I cooked some oatmeal with apricots and cinnamon plus toast. She ate a few bites and gave up. I put the laundry in the machine, put on some white beans with ham at about 10 a.m. then started the second load of laundry while beans cooked and I sat down beside her.

Then, for no reason, she asked, "How much longer am I going to stay here before going home?"

"Mom, you are home. This is our home."

"Well," she continued, "Is it paid for?" "Is all this," waving her arm around the room, "Is all this paid for?"

"Why do you ask?"

She replied, "I'm sorry I can't pay for it. I don't have any money. Do you suppose I could get a job?"

Later, as she was heading for the bathroom, Brenda (our daughter) called. I answered the phone and chatted with Brenda a moment as mom looked on wondering who was on the phone. I told her it was her daughter, Brenda, "Do you want to talk to her?" She took the phone, forgetting she was going to the bathroom and spoke a few minutes too long and soiled her clothes.

I put her soiled clothes in the washer while the previous load was in the dryer. When the dryer cycled and shut off, I went to remove the freshly dried clothes, and she had taken them out of the dryer and was stuffing them into the washer with the dirty clothes.

I asked, "What are you doing?"

"I'm doing the laundry."

I explained, "You're putting the clean, dry clothes back into the washer of dirty things."

Here's the heartbreaker; she said, "Well, I don't know how to use these. I've never had any of my own."

(She has used these same two machines for many, many years.)

2 JANUARY, 2001

I came home from the station, as usual, about 10 a.m. Mom was in the kitchen watching me fix breakfast and suddenly asked, "Have you met the kids?"

At first, I was confused. It dawned on me that she was referring to our children. She seemed to notice my shock, laughed and said, "I'm not going to tell you want I was thinking." And she didn't.

I talked today to a place in Paducah, KY Wellington Park, that specializes in caring for Alzheimer patients. Of course, I intend keeping her at home as long as possible. However, she seems to be progressing so rapidly that time may be short.

Today, these are the symptoms I have observed

1. Trouble dressing, putting her clothes on backward, inside out and once put her panties on outside her slacks.

2. Gets lost while looking for the bathroom.

3. Terrified to be left alone; especially if it is dark.

4. Has forgotten how to operate kitchen/laundry appliances.

5. Thinks I am her brother or some stranger taking care of her, in an unfamiliar place until time to take her home.

6. Soiled her clothes, while stopping to answer the telephone, forgetting she was on her way to the bathroom.

7. Has no idea where we are when I take her with me to once familiar places.

8. Totally confused by television and has ceased looking at the newspaper.

9. When looking for something to wear confuses my closet with hers and gets into my clothes, once putting a pair of my slacks over a pair of her own and frequently will put an arm in the sleeve of one shirt, then put another shirt over it with the first shirt dangling.

5 JANUARY, 2001

She spent the entire day on the couch with a a severe headache.

6 JANUARY, 2001

She seems to feel somewhat better. I convinced her to visit our family doctor. He gave her shots of cortisone/Novocain behind each ear (still treating her for fibromyalgia). Marsha reminded me that her mom once relied on Dramamine for headaches, so I bought a bottle.

8 JANUARY, 2001

This morning, about 5 minutes before I left to do my show, I woke her to tell her I'm going (the dog is asleep in a chair) and I asked, "Are you two going to sleep all day?"

When I returned after my shift, she wanted to know who, besides herself, was sleeping there. Then, "has he gone?" I thought I adequately explained I was including the dog in my inquiry. But, later in the day she asked again, "who was here?" She continues to feel somewhat better. She ate a healthy lunch of beans, ham, and cornbread and slept on the couch most of the afternoon.

9 JANUARY, 2001

As I was brushing my teeth, she came into the bedroom, sat on the bedside, with head partially in her hands and asked, "I know I'm confused and you don't have time to explain, but I don't understand about all this furniture, how it got here, who arranged it. I just don't understand."

I explained, "It's all yours, mom. You helped arrange it many years ago. This is your home."

Later, I had finished the morning paper and sat in one of the dining room chairs. She stood behind me and began to run her fingers through my hair. "Why do you have to go to work?"

I replied, "To pay bills, mom."

"Well, I wish you didn't have to go."

"I'll be back soon."

It's getting much harder to leave her. She's like a little girl. Someday, soon, I'll need to hire someone to sit with her or quit my job and stay.

19 JANUARY, 2001

Only two items deem worthy of entry since the last entry. Our son-in-law, Marty gave me an upgraded Compaq Presario computer he had replaced, and I mentioned it to Loretta.

Later she commented, "It was certainly nice of Marty to give you the computer." I agreed. Then she added, "Didn't he give Barney one, also?" A little taken aback I asked, "Who?" She answered, "You know; he gave one to Barney, too. You know, to Harl." ( _I am sometimes Barney and sometimes Harl.)_

She continues, at times, to think of me as someone new in her life, like I'm somehow not her husband of 55 years.

She continues to lose weight. She's down to 140 from nearly 170 not long ago. Dr. Gordon, yesterday, discovered her Cholesterol is very high and put her on Zocor.

22 JANUARY, 2001

Yesterday she was sitting with head in hands. (She had complained all day of a headache). She turned and asked me, "Do you ever wish you were dead?" I, of course, knew what she was thinking, but answered, "Of course not. Do you think I'm a nut?"

She again put her head in hands and fell back on the pillow as if asleep, but of course, she wasn't.

Today (Monday), she seems in better spirits. She's still complaining of a headache, but she ate a sizable lunch. While I was preparing lunch, she apologized for not having lunch prepared when I came home for work. She wants to help so badly I let her wash dishes because she so desperately needs a sense of purpose. Then I follow up to find each item she washed to put it in its proper place. She's so very confused I want to cry for her. Time and place mean nothing to her. I can't imagine a more horrible and hellish disease!

26 JANUARY, 2001

She has begun hallucinating, imagining someone is in the room, so I cut her Celexa (anti-depressant) in half, and she seems to sleep more soundly.

When I returned home from work this morning, she announced she needed to get dressed to go home. I reassured her that she is home.

5 FEBRUARY, 2001

Our son, Geoff, and granddaughter Sara came in from Florida Sunday. I took off a week to be with them. Loretta seems to have made some improvement since cutting the Celexa in half.

6 FEBRUARY, 2001

She appears to be somewhat stabilized but complains of being dizzy. The dizziness seems to occur when she suddenly moves her head. I remember one of the doctors once asked if that happened. There have been so many doctors, so many questions, and so few answers.

23 FEBRUARY, 2001

The expressed hope of improvement has faded. She has been getting noticeably worse each day. Confusion is much more evident. Frequently, during the night, she calls out, "Are you leaving now?"

"What was that noise?" and "Did you hear that noise?"

Had there been a noise the little dog would have been hysterical. The dog wasn't, so there was no noise.

I was at my computer at about 3 a.m. when she poked her head in and asked, "Has Barney come by yet?" I explained, "Hon, I am Barney." She began to cry and turned back to the bedroom. A few minutes passed, I peeked in to find her sitting on the bed totally confused holding the dog.

Then, at 5:30 a.m., as I was leaving for work, she asked if she could go. She was only partially dressed and I must leave if I'm to arrive on time. I tried to explain the time problem and she began to cry.

When I came home at 8:30 she was dressed, and ready to go. So, since I needed to make a call on a sponsor, we drove to Reidland and had lunch. I noticed she was having trouble selecting her food at the buffet, so I placed my food on our table and returned to help her. Then she couldn't find our table.

20 MARCH, 2001

There seems to be little, if any, change. Still confused, still unable to do the simple things she once did. She tried to iron a shirt with absolutely no success. Yesterday we were in the living room when she spoke, "I can't imagine why they haven't called. I told them to call when they........." and her voice trailed off into silence. I have no idea what she was thinking. Neither did she know. I asked her the time yesterday to activate her thinking process. The time was 11:20. She studied the clock for a moment and with an answer, more like a question, said, "15 until 9?"

28 MARCH, 2001

I needed to write an ad for one of my sponsors; she was seemingly asleep in her recliner. The television was on so I slipped quietly into the computer room and left the TV on. Within a few minutes, I heard Loretta talking and laughing with someone. I assumed she had managed to make a telephone call, she had answered a call, or I had failed to hear someone come into the room. Then suddenly she became louder and, ultimately, began to yell (I mean YELL) to me. COME HERE! COME HERE! WHAT DOES HE WANT?!

I rushed into the living room where I discovered she had awakened to think someone was in the TV talking to her. She asked me, "Is there anyway someone inside there can peck on the glass to get my attention?" She pointed toward the television, continuing to ask, "What does he want? What is he asking?"

I pretended to be as confused as she, as though looking and listening, and explained, "I can't understand him either, Hon, but let's leave him and go back to the computer room."

I turned off the television and assisted her to the chair behind mine at the computer.

To Caregivers: it gradually became apparent that I needed to humor her by not suggesting she has lost her sense of reason or understanding. To do otherwise simply seems to embarrass her and makes her cry.

2 APRIL, 2001

Marsha bought a new programmable auto dial telephone with very large numerals, thinking it would help her mom in calling out. We programmed it so she could call me, at the radio station, by just pressing the numeral #1; Marsha at home on #2, and Brenda's office at #3. It didn't help. We put directions in large print above the phone and explained how she could use it. It didn't help. The sadness is: she is totally isolated when left at home. She can't remember how to turn on-turn off the radio or TV. She can't remember how to call out by phone. It makes the few hours I'm gone seem like a day. The hours drag by so agonizingly slow she often asks, in the middle of the day, "Is it bedtime yet?"

If only we could avoid the confusion we could live with the forgetfulness. But, it gets worse! Much worse! There is absolutely no way one can imagine the torment of being in such a condition! I, unintentionally, ventured into it once in my mind during a dream, as earlier mentioned, and for a moment, it was hell!

9 APRIL, 2001

Last night was a hair-raiser! Sometime around midnight, I was awakened by very hearty laughter. The laughter awakened me, of course, and I turned on a light. It was a really happy laugh and, talking to someone, I don't know to whom, she laughing, said, "Look at that hairdo, isn't it funny." She repeated it and kept laughing and pointing at some imaginary figure.

More than once she would call me out of my slumber saying I had called her and asking, "What do you want?" I never called. I was fast asleep.

Yes, it gets worse!!!

When I'm away from her even for a little while she just holds onto her small dog. It's the only touch of reality she has left. Nothing else makes any sense to her. She more frequently asks when we're going home and "How long we've been here?"

The summer of 2001 offered less hope each day as this disease progressed. Loretta became noticeably more confused and I, in error thought she had begun to lose her sense of hearing. I hoped hearing aids could help so made an appointment to have her fitted with hearing aids.

On May 24th I paid almost $1,000 for aids built into her glasses so they would be harder to lose. It was a useless expense. I decided, wrongly or rightly, that hearing was not her problem. I would later learn she seemed to hear but merely could not understand well enough to comprehend. So she couldn't respond.

The biggest problem with the aids was she could not understand how to adjust them and, without being able to hear the volume, no one else could adjust them for her.

Except our disappointment with the hearing aids, the summer drifted by with little further hope. I fed, dressed, bathed and humored her as best I could. My primary hope and prayer are to be able to afford her any small degree of happiness I can provide. Whatever it takes I will try. I cannot know how much more challenging it will become.

5 OCTOBER, 2001

I regret it has been so long since I found time to make this entry, but it's difficult when she insists on being at my side constantly.

I continue to do all the cooking and, I am actually enjoying it. I do what little housecleaning is done, I do laundry, I iron, and I take care of the yard and water flowers.

I recently stopped all drugs and put her on a Super Vitamin called "Focus Factor" which is advertised as a 'brain food.' Amazingly she seems to be holding her own. No longer does she hallucinate. Her memory seems to have improved (or is it a false hope?). She continues to be paranoid and is afraid to let me out of her sight. She continues to eat my cooking and seems to love it. And, she's no worse, perhaps better, off the drugs and on the vitamins. I've tried it all. I continue searching for some discovery – some new drug – any new potential remedy. And, occasionally, look half-heartedly for 'the ring.'

She remembers to shower each morning and does so without help. I did remove the shower enclosure and install a clear plastic curtain thinking it would be safer. I lay out her clothes, help her with the bra and, otherwise, she manages without additional help.

However, she still does not know where she is, how to get home or the time of day. But, thanks to the Lord, she seems to have improved. Or, here again, is it a false hope?

10 OCTOBER, 2001

I continue taking her with me each morning at 5:30. We're up at 2:30. I shave and shower, then dress her, prepare breakfast and feed her. She's entirely dependent on me for everything.

She, now, can't remember which side of the car is hers. Does she sit in the front or back seat?

This afternoon I wanted to remove some debris in the garden. She insisted that she help, but became confused, so I stopped what I was doing to assist her. I helped her pick up a small limb and suggested she carry it around front to the trash pick-up spot near the street. A minute or so later she returned empty handed and, ignoring me, started toward the rear door. She somehow fell and hit her head on the ground. I didn't see it happen, but when I noticed her heading for the back door as if to enter the house, I asked and learned she had fallen. Was she entering the house because she was hurt? Because she did not remember I was also outside? Why?

8 NOVEMBER, 2001

I decided to accept an offer of Four Rivers Clinic to enroll her for a pharmaceutical testing. She was administered an afternoon of "tests" barely passing the 'memory' portion by scoring a 12 with the requirement being that she scores between 10 and 30. I was told a score of 12 is borderline severe with 10 or below placing her in the 'too late to help' category. They took her blood pressure and found it, also, to be barely acceptable. An EKG indicated a secondary blockage.

I learned the 'testing' was done by groups, with some receiving placebos while some were given the real thing. So, I rejected the program, learned what the 'real thing' was to be, received a prescription and gave Loretta the drug myself.

We returned home and went for a two-mile walk. She wanted to stay a step behind, but I noticed she wandered dangerously from one side of the street to the other. She was walking behind me; she had wandered up a driveway. We returned home, turned into our driveway and she asked, "Whose home is this?" Once inside she asked, "Now, do we have to walk back?"

Our daughter, Brenda, picked up Loretta at the radio station recently and Loretta asked me to introduce her 'cousin' around the station.

She possibly knew Brenda is our daughter, but couldn't find the word 'daughter' and, instead, formulated the word 'cousin.' To be safe, I introduced our daughter as our daughter without any evident notice from Loretta.

12 DECEMBER, 2001

Days merge so quickly I can't believe it has been over a month since I made an entry. But the days have been tough since the last entry.

Each day brings new heartbreaks. She is completely lost from the moment she rises each morning. Today, she began crying and asked, "What's happening to me?" And, I'm sure I don't help her when I'm unable to answer.

For over 55 years I've led her to believe I could answer any question. Now I can't begin.

I took her with me to the radio station today. She didn't know where she was and repeatedly asked if I intended to leave her there alone. "Please don't leave me."

"Who is coming to pick me up?" She asked if 'Pop' is coming to pick her up. _(I'm Pop.)_

When we returned home at 8:30 she didn't recognize our house or that we were home. "Where are we? Who lives here?"

After lunch, she watched as I was putting dirty dishes in the dishwasher and she laughingly remarked that she did not have a machine like that. She said she always washed all dishes by hand. ( _This is the same dishwasher she has used for many years, however, a few months ago she DID begin washing the dirty dishes then in the sink for some reason.)_

Sadly she continues to think she's visiting me in MY home and that she doesn't have a home of her own.

Later, she sat beside me as I was making this entry, and she suddenly called out "Pop."

I took her hand and asked "What?" She explained that she "Just wanted to be sure I am in the right place."

What makes the situation doubly sad is that she realizes she is losing it. She frequently cries and, I admit, I also do. She follows me wherever I go. She seems to think I'm trying to desert her. I appear to be her entire world, and when I'm out of sight, she panics.

I noticed she keeps her purse nearby. I mentioned the fact and she said, "I just want to be sure not to forget it when you "take me home." I can't convince her we are not strangers and we 'are home.'

I now must completely dress her, put food on her plate, constantly look for something she has lost.

But, what mostly drives me crazy is that I have no one to talk to. Not only does Loretta not understand, but I must also repeat everything several times and, still, she does not understand.

It's like being alone. Except the person I love most of all is hurting and there's nothing, I can do. This house is not her home. She's only passing through.

22 DECEMBER, 2001

Marsha is coming for a visit, this morning. I told Loretta. Loretta asked, "Who?" I repeated, "Marsha, your daughter." She asked, "Have you met her?"

Loretta continues to think I am just taking care of her while her husband is gone. But I tried to explain that Marsha is my daughter, too.)

23 DECEMBER, 2001

We arose at 5 a.m. I showered, dressed, made coffee and brought in the morning paper while she showered. I helped her dress and went to the den to read the newspaper. I noticed she was gone an inordinate amount of time. I looked and found her trying to iron some shirts.

Encouraging, even though she has trouble, but it's very strange that she feels like trying anything. It's also very odd, that she irons one sleeve right side out and the other wrong side out.

It's 8 a.m., and she continues ironing shirts while I prepare breakfast.

28 DECEMBER, 2001

She is becoming more paranoid and doesn't want me out of sight. She follows me everywhere. I asked why. She, crying, said, "I'm afraid something will happen to you, and I'll have no one." She is terrified of being alone, not being able to find her way 'home.' I'll celebrate my 80th birthday on January 6, and if the Lord lets me live she will never be left alone!

Chapter 14

### 2002 – Soon "normal' days become entirely different

6 JANUARY, 2002

Days with Loretta which are "normal" now are just another ordinary day but they became entirely different. It was meant to be a happy birthday for me, but it was, in reality, a genuinely happy day for Loretta. And, as I remember, it may have been the last happiness of her life.

Our children, Marsha, Brenda, and Geoff, connived with Jim Freeland (WCBL boss) to do a 'Surprise' birthday party for me. Announcements were made on WCBL, the Paducah Sun ran a front page spread on Friday (4th), inviting ALL to the party. There was a huge turnout, including a former co-worker (Roger Dowdy) from Nashville, whom I had not seen in over 40 years.

I was pleased, to say the least, but Loretta relished it. She smiled continuously for over two hours. Each hugged her and in each instance she acted as if she knew them by smiling broadly and asking, "Well, how are you? I haven't seen you in......." then her voice would trail away, obviously trying to remember who and when. She appeared to know each one but she did not. And all knew it. But it was great to see her smile.

There was very little noticeable change through January, 2002. I had put her on the new Jannsen drug for Alzheimer's (Reminyl) for almost 2 months. She continues on Actos, Zocor, and Prozak since January 4. Plus Vitamins E, Focus Factor plus Ibuprofen.

Infrequently she shows an encouraging sign. On January 27, without any prodding, she began to do an exercise regimen which the family doctor had recommended.

On the minus side, I prepared to remove the bones from chicken I had cooked to make a casserole. She was watching every move so I asked if she wanted to do it. She almost jumped with joy, eager to do 'anything.' I cautiously handed her the knife and she made an effort, became confused and put down the knife. I finished with her watching.

In late January, 2002 the daughters, Marsha and Brenda, arranged for a lady to stay with Loretta while I did my morning program. Loretta would have no part of that! As I prepared to leave Loretta became belligerent, so the 'sitter' left and I took her with me. But soon, very soon a sitter will become necessary.

On January 30, 2002 I took Loretta to breakfast at a restaurant in town and left Mandy, the poodle, in the car. When we returned to the car Loretta properly went to the passenger side, opened the door, picked up the little dog and, while remaining outside, began to close the door. I called to her, "get in the car." As I repeatedly called, "get in the car, get in the car, and get in the car." She, almost in panic, looking in all directions and asking, "Where are you? Where are you?" I, beginning to lose my patience, a little more loudly, demanded, "Get in the car!" She continued looking around and asked, "Which car are you in?" I pushed her door open; she saw me and got in.

How did she get the dog out of our car without recognizing the car was ours? And it may be asked why I didn't open the door for her? Answer:I have come to think it is best to let her do whatever she can on her own. Little endeavors seem to promote thought and also give a sense of accomplishment.

Later I drove to Murray to buy a toner cartridge for my printer. I left Loretta, with the dog, in the car while I made the purchase, I returned in no more than 10-15 minutes to find her almost hysterical. She, in an elevated voice, demanded "Don't ever leave me alone again! I don't know what to do or to say to anyone." Just this morning I was so pleased that she seemed so much better.

11 FEBRUARY, 2002

Our daughter Brenda took Loretta to Murray. They ate at Loretta's favorite restaurant, Capt. D's, and she came home in a great mood. Said she had a big time.

14 FEBRUARY, 2002

Loretta went to the radio station with me today and, this morning, being Valentine's Day, I had an amazing number of wedding anniversaries to announce. During a commercial break I asked Loretta if she could remember her wedding date. She couldn't so I informed her, "It's April 13th.

She asked, "when is yours?" and I told her mine was on April 13th also.

She, with surprise, said, "Isn't that something! Ours is the same day!" (She honestly isn't aware I am her husband.)

I explained we were married on the same day because we are married to each other. She held her head in her hands and I thought she was going to cry.

26 FEBRUARY, 2002

She awoke from a nap on the couch, didn't know where she was. I explained we're home. She queried, "Are you going to stay here with me? Are we staying here tonight? Are you going to leave me alone?"

I again explained, "This is our home. We've lived here together for 30 years. We're married for 56 years and, no, I am never going to leave you alone." And Marsha and Brenda are our daughters.

Later we are having lunch and she began to cry. I asked, "What's wrong?" Then, through her tears she answered, "You're all I have. Don't leave me." I reassured her, "Sweetheart, I'll never, never leave you."

3 MARCH, 2002

Loretta seems noticeably worse. She's more confused. She follows me around the house like a little girl. She explains, "I'm afraid to be alone and that you'll leave me behind and I won't be able to explain to anyone who I am or where I live."

She becomes a little more helpless each day. I now must undress her for her shower, show her where to put those things removed, help her into the shower, adjust the water temperature, help her dry herself, help dress, put on makeup, put tooth paste on the brush, lead her to the kitchen where I prepare breakfast while she begs to help. I put the food on her plate where she immediately mixed it together.

She frequently will look at me and ask where 'Pop' has gone. I remind her that I AM POP.

She cries often (Prozac isn't working). She now thinks we're visiting in someone's apartment and "needs to go home." The old question where am I going to stay tonight haunts her. I joke by suggesting I hope she will let me stay here since this is also my home. This only makes her cry.

11 MARCH, 2002

I keep begging God to give me more patience. It's difficult to pretend all is normal while Loretta gets worse. She recognizes me less and asks often, "When is Pop coming back?"

I was in the toilet for about 15 minutes, when I heard her calling out, "Where are you?" I answered. She repeatedly asked, "Where are you?" Each time I answered. Finally she said, "Well, I couldn't find you. I wondered where you are." A few moments later she asked if it would be all right if she sat on the bed and waited for me.

In looking back, from 2006, I realize I should have been praying that God would show her mercy instead of giving me more patience. She was suffering the torments of hell! I was only suffering frustration.

28 MARCH, 2002

This has been a particularly difficult day. Loretta continues to go with me to the station each morning. This morning she became very upset as I was beginning my open mike commentary around 7:15. She was desperately trying to get my attention signaling that something was wrong, holding out her purse toward me. She became more agitated and, before I finished my shift, she was completely askew.

I stopped to pick up a couple of items at the grocer. I could not have been inside for more than 5-10 minutes but when I opened the car door to enter I noticed her face displayed absolute terror. I repeatedly asked what's wrong and received no answer. Upon reaching home (only 5 minutes later) she was in near panic. I asked again several times, "What's wrong, mom?" Her only answer was, "I don't know, I don't know!"

She continued to appear near panic until, around noon, I remembered a very strong pain pill the dentist prescribed for me called 'Lortab' and telling me one would make me sleepy. I gave her one and she went right to sleep. She awoke calm.

I don't believe I can continue taking her with me while I do my program. She is embarrassed to go to the bathroom because she can't find it on her own and she's ashamed to have the crew see me leading her to it and insisting that I wait outside the door for her.

God, please be merciful. I feel so badly for her. She knows her mind is going. She is completely unaware where she is at any time. She doesn't recognize our home when we enter the driveway. Always asks, 'Who lives here?" Once inside she looks furtively around and asks where we are and who else is here.

It is obvious the time is quickly approaching when I must employ a sitter or quit my radio program. Perhaps the Lord will show me the way.

4 APRIL, 2002

Loretta's condition seems worse. She sometimes seems to feel better, but is totally confused. I took her with me to call on a client today. I asked if she wanted to go with me and she answered that she would have to ask Pop. (I'm Pop!)

While out, she mentioned seeing trains. There are no trains through this area. When we arrived home and pulled into the garage she asked, "Where are we?" But, the strangest of all: I had business at Walmart, and returned to the car after no more than 10 minutes and found her pacing the parking area near our car and calling for me.

In another instance, again at Walmart, I returned to our car only to find she had disappeared. _SHE WAS NOT IN THE CAR!_ Almost in a panic I began a search and noticed a figure in another car. I walked to the other car with the intention of asking if Loretta had been seen by them only to find that person in the other car was Loretta.

I can't imagine what the owner of that car might have thought, returning and finding a strange woman in his/her car!

To Caregivers: This taught me to never, ever, leave her alone!

7 APRIL, 2002

A mild case of desperation has descended on me, so I talked to the insurance agent, with whom we have the Long Term Care Insurance. How much of the costs will the insurance cover if we need help? The policy was a modest one, but found it would cover all expenses, either at home or in a nursing home, up to $90.00 a day. What a lifesaver!

Marsha called today (April 7), talked to me for a minute and then to Loretta. (I don't think Loretta ever knew who was on the other end.) When the conversation seemed to be concluded I hung up the phone, started to turn off the TV and something caught my attention. I stood listening to the TV a moment when I realized Loretta was talking and laughing as if she were talking to someone. I turned and found her standing, holding her hand to her ear as if holding a telephone and talking/listening to someone. I didn't interrupt, just waited. Soon she said, "Well, if that's all anyone else has to say, I'll hang up."

Obviously she didn't remember the conversation with her daughter had concluded. Or had it? Did I take the phone from her before she finished the conversation?

It was a pretty day so I thought a drive around the area might raise her spirits. We weren't a half-block away from the house before she began to beg to return, saying, "This is not right. We should go back and be with the others. We shouldn't leave them there alone." THERE WERE NO OTHERS. Was she thinking the phone conversation meant there were others in the house?

13 APRIL, 2002

It's our 56th wedding anniversary. She never knew, even though we told her and the daughters brought flowers. She never understood. In fact, she stayed on the couch most of the day. She began to stir a little after the girls left and seemed to feel a little better. One can never be sure.

15 APRIL, 2002

Peggy Nolcox coming over to let Loretta become acquainted, with the idea she can care for Loretta mornings while I work. Loretta continues to speak to me as if she's visiting in my home and she needs to go home to her husband. Strange.

Chapter 15

### 2002 – And things go really bad! But the Lord makes the way...

25 APRIL, 2002

Loretta broke her left leg just below the knee. The orthopedic surgeon at Western Baptist Hospital, in Paducah, said, "It's a terrible break!" I say it was a heartbreaking tragedy. And it was my fault!

It was a beautifully sunny day and I thought she would enjoy walking around the yard with the dog. We walked around in back, playing with the dog, and started back to the front. She was walking a few steps behind. I neared the front, looked back to check on her progress and she had disappeared. I assumed she had reversed herself and had returned the way we had come. So, I walked around to meet her. She was nowhere to be found. I walked around again, and again. I looked throughout the house thinking she perhaps had entered while I was in the back. I walked the yard once more and was standing in the front, totally bewildered, when I heard a very faint voice, almost inaudibly calling, "Help me. Help me." It seemed to come from the next door neighbor and I, at first, thought their small children might be making the sounds. But I looked, walked over and found Loretta sprawled on their driveway where she had fallen off their porch, falling about 4 feet onto the pavement.

She loved the neighbor's little ones and often baked things for them. She would deliver them to the front door. She obviously managed to get to the front door again, but then walked off the porch in her confusion. I picked her up, put her in the car, delivered her to ER at Marshall County Hospital, where I was informed it was too serious for them and so we took her, by ambulance, to Western Baptist Hospital in Paducah.

The doctor described the break as "terrible," that the bone ends immediately below her left knee had mushroomed. He would not recommend surgery and said a cast and prayer might enable her to motivate with a walker or other device in six to eight weeks and then a Nursing Home. Oh Lord! Not a nursing home! But, to be discovered, the skilled care of a nursing home is far, far better than most alternatives.

So, there goes my plan for keeping her home. The Lord is taking over.

30 APRIL, 2002

I put "my heart" in a nursing home today. I pray we can endure. It's a terrible heartbreaker!

With her left leg in a cast, to be kept elevated without exception. Western Baptist Hospital was forced by the ridiculous Medicare law to dismiss her after four days, even though it's expected she will be immobile for 6 to 8 weeks. After hurriedly researching the situation I discovered I had just two options; I could put her in what is called a "swing bed" unit at Marshall County hospital for 20 days, then move her, or place her at Britthaven nursing home, where Medicare would pay 100% for 20 days, then 80% for up to 100 days. I felt I had no choice. My world seemed to have ended!

To Caregivers: I never understood the phrase "swing bed" and the revelation that she could only occupy one for 20 days then be forced to move. I later learned that a 'swing bed' simply is a temporary arrangement (at Marshall County Hospital, at least) until a bed is available in the Long Term Care Unit.

So, I found a bed at Britthaven Nursing Home south of Benton.

In her room, simply lying flat on her back staring at the ceilings, she exhibits no interest in anything. _(I'll later learn why the blank and forlorn expression.)_ Her face brightens into a wonderful smile when I enter, then she holds tightly to my hand to prevent me from leaving. She begs to "come home" with me. Lord, I wish she could. I'm miserable at home alone. I look for her everywhere; at the breakfast table, in her favorite chair. Damn, I miss her!

She's so unhappy and miserable. Alzheimer's has to be total hell! It's as if the entire world has disappeared and left nothing to hold onto except the immediate moment. She looked at me yesterday and said, "You look like my husband." Strange she remembered how I looked, but failed to know that I'm her husband, not just a stranger of the instant. Should I spend every spare minute with her simply watching her cry and beg to come home?

5 MAY, 2002

I sat at her bedside Saturday (yesterday) from 1 p.m. until 8, came home and retired until the nurses station called at a little past midnight to inform me Loretta was climbing out of her bed and calling for me. I returned and sat with her until she fell asleep and I came home. I returned at 8 this morning and stayed at her side until 3 p.m.

I've learned I would rather sit at the nursing home, with her holding my hand, than to be in our empty home alone. I keep thinking of the many times, in the past few months, when she would beg me to sit beside her on the couch. She seemed content to simply touch me, to run her fingers through my hair or hold my hand. I think she was realizing that I was the last remaining thread of her life and she was trying desperately to hold on. Hold On. How sad. It hurts to think about it. Hold on to what? To me?

9 MAY, 2002

Because of the pain, the doctor has prescribed a drug which seems to have put her in a coma for the past 4 days. I stayed all day, today, and seemingly she is coming out of the coma, however, now she has a urinary tract infection caused by 5 days on a catheter.

10 MAY, 2002

What to do? I'm bringing her home even though it means employing someone to sit with her. God bless her. She begs to come home. She's coming home!

She was up and in a wheelchair when I went by this morning at 8:30, slumping over a very, very cold breakfast tray, nothing eaten. I asked an aid to heat it. They did. She still would not eat.

I offered water. She gulped it down. Not one, but six small glasses of ice water! I suspect she went for at least 4 days without anyone suspecting she was thirsty because she couldn't ask. How sad.

12 MAY, 2002

Early, this morning, Loretta seemed more lucid and even sitting up in bed, smiling broadly, and verbalizing quite clearly. However, when I returned at about 1:30 she had become very confused, making half statements, asking questions that made no sense whatsoever and, by 3 p.m. she was talking to herself about unrecognizable subjects, asking what church we're in, where are the children, how many are here, etc., etc.

To Caregivers: I've been told about what is called, 'Sundowner Syndrome." If I understand, patients become worse later in the day.

13 MAY, 2002

Loretta is heavily sedated with morphine because of the pain and chattering in unknown tongues. Hopefully, the doctor will reduce the dosage soon. The cast is to be removed June 11.

Perhaps, just perhaps, she can regain a small amount of normalcy, she can return home and I can sit on the couch beside her. She seemed to want me there beside her constantly and I, on occasion, would. She seemed driven to sit very close to me or hold my hand.

If not sitting on the couch with her I would catch her eyes fixed on me and smiling as if she were trying to memorize my face so as not to forget. I keep thinking about how she always wanted to tousle my hair, always brushing it opposite to the way is lay normally. I believe she is aware of losing her mind and is trying to capture and store as many memories as possible.

I feel guilty. If only I had hugged her more. If only I had sat close more. She has always been so full of love and affection.

To Caregivers: Mark the foregoing for its importance. The hug and the closeness are of paramount importance to these poor victims of Alzheimer's hell!

15 MAY, 2002

This morning Loretta uttered the first complete sentence I've heard in weeks. The physical therapist came into the room and asked Loretta, "How are you today, Loretta?" Loretta replied, "Well, I'm here by being careful."

I asked what had been changed, if anything and I learned the medication had been changed.

I helped her eat lunch and she ate quite well, but amazingly, drank almost 6 little glasses of water and one tea. She told me she was thirsty. I believed it.

Then, she began asking incomprehensible questions. I suspected she wanted to return to bed, I called the aides; they checked her clothes and returned her to bed at 2:30.

16 MAY, 2002

I was pleasantly surprised this morning, at 8:30, to discover Loretta in great spirits, laughing, talking very sensibly and seemed to feel very well. I sat, talking to her and holding her hand until 11 a.m., went to lunch and returned at 1 to be told she would not eat her lunch.

She wanted her husband to help. I took her lunch in, gave her a spoonful though she protested each bite then spitting it out. She asked for water, I gave it to her and she spat it on the bed, slapping at me. I'm sure she, again, did not recognize me. Was it 'Sundowner Syndrome' kicking in?

Today I heard about a new Alzheimer drug and called the doctor and asked if he could recommend it. If there is a remote chance it may help, even a little, I must try. We've tried all others until now.

17 MAY, 2002

Loretta was out of bed in a wheelchair at 8:45 and I was told she ate a very good breakfast. I sat with her until 10 a.m., left and called the doctor about Zyprexa, only to learn he was on vacation. So we must wait until next week to try the new drug.

I returned to her at noon and attempted to feed her lunch. She would not eat and finally told me to (and I had never, never heard her use the phrase) "shove it up your ass!" Then she began to fall asleep in the chair; the aides came in, changed her clothes and put her in bed.

19 MAY, 2002

Loretta was in a wheelchair in the 'community room,' where the aides help the 'feeders,' when I arrived this morning. She seemed very tired and agitated. I pushed her to the front lobby, but she didn't seem to appreciate that move so I rolled her back to her room and suggested the aides put her in the recliner, which I had brought from home. They sat her in the chair and she promptly fell asleep.

To Caregivers: It is very important to attempt to understand their wants/needs because rarely can they express them. In the above she was obviously tired of the wheelchair and quickly fell asleep in the recliner.

21 MAY, 2002

I hurried to the nursing home as quickly as I finished my morning radio thing (about 9). She was being fed breakfast which she seemed to enjoy. Later in the afternoon I thought she might enjoy the sunny day and rolled her outside only to notice that she seemed to want a sweater. I brought one to her, but when I attempted to put it on she went into a rage and slapped my face. So, I lay the sweater in her lap. In a few minutes she, with a little help, put on the sweater with no help.

To Caregivers: Never miss an opportunity to let them do what they can do for themselves.

Loretta's story begins to be one of the caregiver as well as the patient. In fact, only by being careful, can the caregiver avoid becoming the patient.

I try to believe that once the drugs, given for pain, leave her system she will be better, but I then remember she was much the same before breaking her leg. I am becoming accustomed to the empty house. However it's as though life, for me, is over. There's no longer any pleasure in doing new things, making plans or dreaming dreams. For, if she isn't a part of them, there's no pleasure. Could it change? No, it only becomes worse.

The horror has just begun. I pray for myself as well as for her. I can't know which is worse; not knowing or knowing the future.

23 MAY, 2002

Our family doctor ( _I omit his name for obvious reasons)_ has Loretta on Xanax and MS Contin (the morphine derivative). I have researched to learn that, number 1, Xanax should never be given to anyone over 60 years old (Loretta is 76), number 2, it should never be stopped abruptly but tapered off from 5% to 10% daily and, number 3, it is very addictive.

I called the doctor's office today and left a message on his answering machine to the effect that something must be done about her medication. She is getting too much of something! So, what does he do? He ordered everything stopped abruptly and Loretta went into hysterical fits!

25 MAY, 2002

A terrible day! First, the nurse told me Loretta fell out of the wheelchair twice, but only received a bruise. She cried most of the day and asked me to "kill her, saying she didn't want to "go on like this" and repeatedly begged me to bring her home. Really hurts. She is miserable. So is the caregiver. Lord show mercy on both.

26 MAY, 2002

I sat with her until she fell asleep at 3:30 today. She was somewhat upbeat, smiling and even wisecracking a little. I couldn't believe the mood swing. I enjoyed sitting with her all day.

28 MAY, 2002

I found her groggy-drunk in the wheelchair. I peeled an apple and fed it to her. She seemed to greatly enjoy every bite even though she seemed only half awake; I left her at 11:30 and returned at 2:00 to find her fast asleep in bed. The nurse informed me that Loretta was back on a reduced dosage of Xanax to prevent her from attempting to stand on the broken leg. Perhaps she will cease crying to come home.

Loretta is so very unhappy. She thinks I have abandoned her. She asked about the new girl I have at home to take her place. I tried to assure her there will never, ever be another girl to take her place.

She cried and said, "I thought I would never see you again."

I have trouble sleeping thinking how miserable she is. I will bring her home no matter the consequences!

30 MAY, 2002

I bought a small package of freshly cut melon w/grapes to determine if Loretta might like it. She loved it! At first she was a little hesitant but one bite brought the biggest smile I had seen in months along with the remark, "this is worth 50 cents." Not only did I see an unexpected smile, but the surprise of hearing a complete phrase. And she ate the entire bowl of fruit. I don't know how much better it made her feel, but it made me feel much better.

The medicine girl came in and gave Loretta the morning dose of Lortab and within 20 minutes she was nodding off to sleep. Since it was time for lunch I asked the nurse, "why isn't the Lortab given AFTER she eats since it seems to knock her out?" I think I'm beginning to get on their nerves. June 11 (the date to remove the cast) please hurry. I hope I can bring her home where I know she'll be happier.

31 MAY, 2002

I didn't get to the 'home' until a little past 10 and found Loretta sitting in her wheelchair, seemingly, in a good mood. I was told, however, she had been giving them a rough time. I left to run an errand and returned at 1:30 to find her in the dining room being fed or an aide was attempting to feed her. I suggested to her that if she would eat I would take her outside to get some air. It worked. She ate it all.

Our daughter, Brenda, called later to inform me that the 'home' had called to report Loretta was throwing her food, grabbing people sitting near her and trying to rip off her clothes. The nurse had called the doctor and he had added Ritalin in addition to the Lortab. I was told by the nurses that Loretta's behavior was caused by the Alzheimer's and the trauma of a broken leg combination and was not due to the drugs. I never quite accepted that premise.

To Caregivers: Question everything given the helpless loved one, even risk obtaining another opinion, another doctor, anyone with knowledge of such things. I don't intend to imply the above was in error, but I questioned the wisdom and never tried for another opinion. I later wished I had done so.

Then she broke my heart again.

I was sitting beside her when she leaned her head over on my shoulder and said, "I want to go home with you." I assured her that she certainly would go home with me just as soon as the leg healed.

She began to cry and said, "Nooo, you will have someone else by then." Gut-wrenching is the only way to describe my feeling. I hugged her and tried to assure her there would not be someone to take her place, ever. If my feeble attempt succeeded I couldn't be sure.

1 JUNE, 2002

I thought Loretta might enjoy a Chinese lunch so picked out some of her favorite items from a local Chinese buffet. She seemed to enjoy it very well, so I know to try it more often. This idea came to me when I was told she literally throws her lunches all over and refuses to eat it. (Is it her way of saying 'it's not good'?)

Marsha paid her regular Saturday visit and left around 3 p.m. Soon after Loretta became very agitated, first pulling up in bed to a sitting position. Then sticking her foot through the side bedrail, hanging her head over the side, lying down, sitting up, crying, talking gibberish, asking questions with no obvious answers, jerking the bed sheets off and throwing them in the floor. The aides placed her in the wheelchair, rolled her into the hall where they could keep an eye on her and I left.

2 JUNE, 2002

I visited in the early a.m. and found Loretta fast asleep. I returned in the afternoon and found her asleep again. I suspected she endured a very rough night, a continuation of yesterday afternoon's agitation.

3 JUNE, 2002

Loretta seemed somewhat better today. I checked in about 10 and was told she ate all her breakfast. The aides took her to therapy so I dashed home to get a bowl of fresh melons I had bought for her. She ate all the melons, then within a very few minutes, ate 99% of her lunch.

I sat with her until 4 this afternoon. As I prepared to leave she began to cry and beg to go with me. She held my hand and, crying, said, "Take me with you. I want to stay with you."

With a lump in my throat I wheeled her chair into the hall so the nurses could keep an eye on her and I left her crying.

I must bring her home as soon as she can walk. Anything is better than watching her cry and beg to come with me.

4 JUNE, 2002

I visited just before noon today with the idea of feeding her lunch. She was in the 'community' room where they take the 'feeders' (those who can't seem to feed themselves). She was rattling on in some foreign tongue, waving her hands around and, quite obviously, very upset.

I leaned over, kissed her and said, "Hi, mama." She began speaking loudly in a very angry voice without appearing to recognize me. Over protests I moved her into her room, sat beside her, took her hand and talked to her until she calmed down slightly. Her lunch came in, I fed her, and we sat with chairs pulled close until after 4 p.m. When I stood to leave I said, "Well mom, I have to go work for a little while, but I'll be back soon. She smiled and I left. No crying.

5 JUNE, 2002

I sat with my girl from 11:30 until 4:45 today. I fed her lunch which she ate well, plus she drank a 4 ounce carton of milk, some apple juice, what they call a Health Shake, plus two glasses of water.

I put Loretta in her recliner and she fell asleep.

I came home, opened my mail to find a circular including a note about Alzheimer's and a web site to check out. I logged on and read some horrible first person stories. I retired and suffered nightmares, and dreamed of seeing a casket falling out of the sky into the ocean, as a small very weak voice was calling out, "Help me. Save me. Save me." I could not sleep more. It was almost midnight. I arose, showered, ironed two shirts and went to the radio station.

7 JUNE, 2002

I have prayed in the past, but only casually talking with God. Many times, while driving, many times during the war, but last night I really prayed. I prayed on my knees. I cried for help.

I asked God to please allow my Loretta just a little more happiness. I don't understand why she deserves the torment she is now suffering.

She was not in her room when I arrived just prior to noon. She was not in the community room. I looked again in her room and heard her calling loudly from the room across the hall. No one could explain how she entered, but an empty wheelchair blocked her exit. I hurried in and asked what she needed and she, very upset, loudly explained that she needed to go to the toilet and "had been trying all morning to get help." It took four aides to handle her, but she really did have to 'go.'

After 'going' I asked the aides to place her in the recliner where she immediately relaxed and became calm. She chatted very sensibly, lunch came, I fed her, and she slept until 4 o'clock. But, amazingly, she put words together better than in weeks.

I prepared to leave around 5 and she began to cry.

I promised to bring her home as soon as possible. She's so alone and frightened at the nursing home and I'm miserable in an empty house without her. So, why not?

8 JUNE, 2002

It became obvious, today, why I should bring her home. Marsha paid her regular Saturday visit and left at 3. I intended to sit through Loretta's evening meal until 7 or so, but at 5 she proclaimed that she needed to 'pee.' The aides assisted her through the toilet process while I waited in the hall. They put her into the wheelchair and rolled her into the hall. She went wild!

I don't think she realized I was standing beside her. I leaned over and asked what she wanted and she began rolling in the direction of her room still complaining that she needed to 'pee.' She continued to fight toward her room, ripping off her blouse. The aides came to redress her and tried to calm her.

Later, as I attempted to understand the above, I supposed any one of several things could have upset her and she simply could not put them into words:

(1) The last time she saw me was in the room and she wanted to return and find me; (2) She knew the aides were taking her into the community room, with some who had hit her a time or two; or (3) She simply wanted to return to the recliner where she last was sitting holding my hand.

Whatever her reason I put her back into the recliner and stayed with her through the evening meal then stayed with her until she fell asleep.

9 JUNE, 2002

I arrived at 9:30 this morning. The charge nurse cautioned me not to awaken her because she did not sleep at all last night and she was fast asleep. The nurse was wrong! I cracked open the door to take a peek and was surprised to find Loretta awake in the recliner. Loretta had, without assistance, moved from the bed to the recliner. (The heavy cast is still in place.)

The nurse could not believe what had occurred and could not explain. I stayed and fed her lunch, which she ate very well. By 4 p.m. she was very incoherently asking half-phrased questions. Finally, exhausted, I informed her I needed to return to work but would return soon. She seemed to accept the idea and I left.

All are looking forward to the removal of her cast on June 11. We hope Loretta's disposition will improve.

11 JUNE, 2002 – I guess I expected a miracle. It never happened.

This is the BIG day when everything is to become better. The heavy cast to be removed and her mental attitude is to improve when she is able to become a little more mobile.

I guess I expected a miracle. It never happened. In fact, we had a terrifying trip home.

Help was required in transporting her to the hospital in Paducah so we hired a special 'transport service.' We decided to dismiss the transport system once the cast was removed, thinking she would be more at peace in Marsha's van, with me sitting beside her, a near tragic mistake.

Homeward bound on I-24 Loretta became extremely nervous and agitated and become gradually worse until she was screaming, slamming her head against the side window and screaming that she wanted to jump and 'end it all.' She fought 'something' all the way. I couldn't reason with her or even understand what exactly she wanted. Marsha and I were absolutely bewildered and thoroughly frightened.

12 JUNE, 2002

I arrived at Britthaven just before noon. The therapist was bringing Loretta out of therapy and said Loretta did really well, for whatever that's worth. The aides informed me they had showered her and powdered her, which must have felt extremely good after so long a time. I noticed she was so exhausted her head was falling over in sleep, so I rolled her into the room, picked her up, and put her in the recliner where she was asleep almost instantly. Lunch was brought in at noon, but I elected not to awaken Loretta. She stirred awake at 1:30. She said she was hungry so I fed her. She ate well then fell asleep and slept until 4.

When she awoke around 4 she attempted to stand and I attempted to explain she could not stand, yet, on the broken leg. She would nod as if she understood and continue in her attempt to stand. I explained again. She would nod as if understanding and again, attempt to stand. I would say no. The routine continued for ten or twelve times. Eventually I lifted her into the wheelchair, taking her to the veranda where we watched the rain for a while until she began to cry.

I returned her to the nurse's station, kissed her and turned to leave. She cried like a baby, begging to go with me. I can't resist reason much longer. I must take her with me soon, or lose my mind!

14 JUNE, 2002

At about 4 this afternoon the Nursing Home Director of Nursing informed me that all was set to admit Loretta into the "Behavioral Health Unit" at Lourdes Hospital in Paducah. As I understand, the foregoing is a psychiatric unit for mental patients, but the purpose for Loretta is to determine if anything can relieve her depression, hopefully restoring her to her condition prior to breaking her leg.

Since it is late on Friday I expected the nurse to tell me the admission would be someday next week. No. The ambulance is to be here in 'twenty minutes.'

The aides quickly bathed her, washed her hair, brushed her teeth and changed her clothing in fifteen minutes and Loretta was whisked off to Paducah.

15 JUNE, 2002

Marsha and I visited Loretta in the psychiatric ward today but she was so exhausted she never knew we were in the area. We were told she cried all night and fought them continuously. We were informed a nurse was required to sit with her all night.

We have an appointment with a neurologist in Murray. If one can't help, perhaps another can. But, I believe it's all in God's hands now.

While mowing my lawn, this afternoon, I began to think how she broke her leg when she walked next door to visit Lisa and the kids, whom Loretta adored. She loved those kids and frequently baked cookies for them. It torments me to remember that, had I held her hand during our walk as she wanted to do, perhaps she would not have needed to suffer the additional pain.

16 JUNE, 2002

I've visited Loretta in the psychiatric ward daily, but today was special.

I arrived while one of the aides was feeding Loretta and I could not believe what I saw and heard. Loretta was enjoying herself unbelievably. She was laughing, wise-cracking and smiling the happiest smile I had seen in months.

As I approached her, she turned and saw me, reached out for me and happily said, "Here's my husband!" The aide asked, "What's his name?" Loretta, with a huge grin, said, "Horace."

Of course, she was teasing, knowing my name is Harl. She was making a joke. It was wonderful seeing her in such a good mood.

Sadly, the next day, it's back to confusion.

To Caregivers: Enjoy the rare 'good' days. They are few.

20 JUNE, 2002

They brought my sweetheart back to the nursing home today, after 5 days in the 'ward' at Lourdes in Paducah. Each time I visit she insists she wants to go home with me. I keep promising that will come to pass. She cries. I can't imagine being able to endure much longer.

25 JUNE, 2002

Each day is different now. One day she's upbeat and somewhat happy, the next day depressed and crying.

I arrived at the nursing home this morning at 10:20 to find her in the wheelchair obviously very tired. She saw me approaching, looked up and gave me a big smile. I asked if she is tired. She nodded in the affirmative, so I asked if she would like to sit in the recliner and she, again, nodded yes. I lifted her into the recliner and she slept until after 3. When she awoke her expression was, again, very sad.

I asked "why so sad, hon." She thought about the question a moment, and then responded, almost in tears, "You must like that other girl very much." I asked, "What other girl" She continued, "The one you have at home."

I tried to reassure her there is, and never will be, another girl, yet she continued to cry and I again asked, "What's wrong?"

And then she broke my heart! She answered, "I'll never get to see you again!"

I've got to take her home. I can't stand more of this.

29 JUNE, 2002

Loretta seems to always be very tired, but falls asleep immediately when I place her in the recliner and sit beside her. The nurses tell me she hardly sleeps at night, but roams aimlessly around the hall and rearranges tables, etc. in the lounge.

Is it because she relaxes when I sit beside her or because she enjoys the recliner? Today I had the foregoing question answered! I decided on a desperation move. I am going to sit beside her all night or until she's asleep.

At approximately 7 p.m. she indicated she needed to use the toilet. I called the aides and suggested they prepare her for bed after the toilet. They put her to bed, I pulled the recliner against her bed, tilted the back to be on the same elevation, held her hand and the result was revealing.

For much of an hour I glanced over frequently to see those beautiful blue eyes wide open, looking a little bewildered as if she were trying to understand the new arrangement. I don't believe she was convinced I was really beside her. I suggested to her that she should sleep. She looked directly at me as if trying to be sure I was really there and promptly fell asleep.

I did likewise. I stayed throughout the night often hearing her, almost as if in her sleep, muttering, "Pop, are you still here?" I would squeeze her hand to reassure her and she would drift back into sleep. She awoke at 5:30 a.m.! One of the aides remarked that Loretta had not slept so well since being admitted.

Question settled! If/when I bring her home she's not likely to keep me up. So, as soon as the doctor clears her to put weight on the healed leg she's coming home. She deserves every moment of happiness possible. July 9 is the day she comes home!

It may be for only a little while: one year, one month, one week, one day, one moment. She deserves it.

4 JULY, 2002 – Imagine the joy to come when she reaches her permanent home with Him.

She was very depressed today. I attempted to explain she would go home in five days. She began to cry. I tried to console her and asked why she was crying.

"You're going home in a few days," I tried to make her understand. She continued to cry and said, "I thought I would never get to go home again."

That did it!

I called our daughters and informed them I was bringing their mom home Saturday, July 6th, not July 9th! They thought it was a good idea and came to the 'home' to help. When we made her understand what was happening I have never seen a bigger or happier smile. She literally beamed with joy!

Imagine the joy to come when she reaches her permanent home with Him.

Now, however, she seems to enjoy being in familiar places with me, after thinking she would "never see me again" or "come home again."

I feel thankful I can do for her as, I know, she would do for me. Of course, it's a small burden. I cook, clean house, bathe her, dress her, and wheel her to the toilet when needful. But she would do the same for me.

It's unclear but she seems a lot better. Her thoughts and speech are more understandable. She reasons more clearly. A doctor suggested it could result from the blood thinner, which is allowing better circulation to the brain. Another thinks it may be the new drug, Zyprexia, prescribed as an anti-psychotic by our doctor at Lourdes Hospital.

To Caregivers: It should be noted that, later, it was determined the drug, Zyprexia, has caused strokes in some and Loretta suffered at least one later.

She's home!

Home Health (through Murray-Calloway Co. Hospital) will start visitation soon.

11 JULY, 2002

The Home Health people swooped in yesterday. They checked her vitals, bathed her and inquired about her food intake: "Is her food proper for diabetics and does she get two meals daily?"

15 JULY, 2002

I have, to a small degree, kept my listeners on WCBL somewhat informed about Loretta's progress or lack thereof. This morning I mentioned Loretta's apparent and minute improvement and that prayer is a powerful tool. A sweet lady called in tears, saying she was so happy to talk to me – that I had given her hope because she, too, had recently been diagnosed with Alzheimer's. Oh Lord, if there could only be a small, small bit of hope in avoiding the hell they call Alzheimer's.

17 JULY, 2002

Loretta, amazingly, is showing considerable improvement, not only physically but mentally. She frequently surprises us. The Home Health lady asked Loretta to sign a paper and she did. She hasn't written anything since prior to the fall.

Todd (our grandson) called from his boat at Key Largo. I handed Loretta the phone and, unbelievably, she carried on a coherent conversation. When she handed me the phone Todd was ecstatic. He said, "Wow, she sounded better than before the accident!"

To Caregivers: The experts have warned that I should not be too hopeful because Alzheimer's patients can do nothing but get worse. I say 'so what?' I prayed to God for a few more days of happiness. A month? A year? Whatever. God is good!

30 JULY, 2002

Things have continued quite routinely for the past several days. Loretta seems to be doing much better. I've even been allowed to eliminate the use of the protective diaper because she has been very good about announcing when she needs to visit the toilet.

When possible I load her into the car and simply drive around the area. She does not know where we are at any point, but she does seem to enjoy getting out.

I needed to do some yard work so I maneuvered her wheel chair into a shady spot where she could sit and watch. She incessantly smiled.

I'm immeasurably glad I brought her home. She's obviously pleased. It's great to see her smile again.

3 AUGUST, 2002

I hired a part time sitter to be with Loretta while I am working. She has chosen not to work on Saturdays, so Marsha (daughter) arrived just in time for Loretta to have her first in-her-pants-accident.

I've had no luck finding anyone suitable to sit. So, I'll take her with me, while I do my morning radio program, afterward take her to Adult Day Care (operated by Murray Hospital), then take her home in the afternoon, after taking care of my client business.

4 AUGUST, 2002

I prepared breakfast, cleaned up the kitchen and did two loads of laundry. Loretta won't let me out of her sight. She frequently asks where we are and when I say, "home," she looks around trying to find something familiar. She also thinks there are others in the house and I've not been able to convince her otherwise. She, again, is totally confused. I watch TV and she stares off into space.

22 AUGUST, 2002

Since I lost the sitter in early August Loretta has been with me to the station each morning and, until this morning, has been no trouble. However, this morning, she didn't make it to the toilet in time and I had the chore of cleaning her. But love has no boundaries. She would do the same for me.

The Home Health people come Mon-Wed-Fri to bathe her and, in the last few days, she has begun to resist. It has begun to be almost a fight, but she can't possibly bathe without help. In fact, she can't wash her hands without supervision. She has forgotten the direction to the bathroom. She does not know she's home.

To Caregivers: I learned that Alzheimer victims all seem to be afraid of water. However, I think they, also, may be embarrassed to need someone to bathe them.

And, also strange, when I speak to her, even though we are within arm's reach, she seems to think my voice is coming from the opposite direction and looks away from me. The louder I speak the more confused she becomes. It's unbelievably frustrating.

She continues to lose weight even though she eats very well. Is this because she is aspirating a large amount of her intake? She is to later develop pneumonia as a result of aspiration.

She insists on being near me wherever I am, even when I take a shower, she insists of sitting in the bathroom.

I know the time is rapidly approaching when I will be forced to return her to the nursing home. Not until it is utterly impossible to care for her at home. Only then! It's not only for her sake, but I cannot bear to be alone in our house.

29 AUGUST, 2002

Loretta seemed almost totally insane, this morning. First though it should be noted that during the night, I awoke her at 11:30 and asked if she needed to 'pee.' She answered, "No." I called her again at 1. Same answer. I was up at 2 a.m. and found her fast asleep. I checked on her at 3:20 and she was lying quietly, with eyes open. I asked it was time to get up and 'pee.' She said, "Yes." Then I saw it was too late. She was soaking.

As I led her to the dining room I began to notice a difference. I powdered her pills, mixed them with applesauce fed it to her. Almost forcefully. Then fed her cereal one bite at a time and, after each action, whether pills or food, she would ask, "What next?"

One other observation; I'm beginning to wonder if she may have had a light stroke. I've wondered if a stroke could explain why she looks to her right when I speak from the left. And the more loudly I call from her left the more frantically she looks and moves to the right.

To Caregivers: One of my most regrettable mistakes came about at this time. Why I didn't get her to a professional I don't know. Could treatment at this time have prevented bigger problems later? I could not know if her actions were naturally a result of Alzheimer or something new. Don't guess. Let a professional do the guessing.

It was revealed in 2006, if a stroke is suspected the victim should see a neurologist within three hours so it may be reversed. Ask three questions of the victim. Ask: 1) the victim to smile 2) to raise arms above the head and 3) to repeat a simple sentence. If the victim is unable to perform any of these three acts, rush to ER immediately.

1 OCTOBER, 2002

I employed the services of Barbara Reed to begin the final week of September. Barbara agreed to be on duty at 5 a.m. Monday through Saturday and sit with Loretta until I finish my duties at the radio station. Barbara comes in at 5, dresses Loretta, feeds breakfast, brushes her hair, and helps Loretta brush her teeth. _(I learned the Long Term Care Insurance will pay these bills.)_ How fortunate and blessed to have acquired this policy just a few months before Loretta's diagnosis.

It has been a blessed two months and Loretta is able to remain at home. She sleeps well, eats well and seems to feel quite good. However, she rarely is able to make a coherent statement and sometimes has trouble eating without dribbling food down her front _(another sign of stroke?_ ). She still does not have trouble saying, "I love you" or, "Where are you going?" Even with Barbara present, Loretta does not want me out of sight.

No longer are we able to eat out. So Barbara prepares a simple meal at noon. Home Health Care visits three days a week, cleans house, bathes Loretta (which she detests) and checks her vitals.

3 NOVEMBER, 2002

Since I have no duties at the radio station Sundays, Barbara is off duty. So, this morning I had made coffee and had read the paper when she awoke at about 6. I helped her to the toilet and noticed she had slightly soiled her diaper. I removed her clothes, lifted her into the bath and cleaned her, redressed her in clean clothes and took her to the dining room where she ate a hearty breakfast and shortly announced she needed to "wee-wee." We were only halfway to the toilet when her bowels let go and she filled her clothes again. So, again I stripped her, put her in the shower and bathed her with soap and warm water and dressed her again in clean clothes. Back in the den in a few minutes she again told me she needed to return to the toilet. This time we made it, but she had a huge movement.

5 NOVEMBER, 2002

Her condition sometimes seems better, sometimes worse. Barbara has left for the day. Loretta and I were sitting side by side on the couch when she turned and asked, "What's your name?" then asked, "Where do you live?" My answer seemed to bewilder her. She appeared to recognize the name from somewhere in her memory, but didn't understand why I live here.

I took her to Adult Day Care Center after noon. She caused a considerable disturbance as I left. She did not like being left there and she made sure all knew it. She frantically attempted to follow me in her wheelchair.

27 NOVEMBER, 2002

Loretta is, again, noticeably worse. Her every utterance is, again, in fractured sentences, never understandable. She has a dry, hacking cough nightly. Is this cough a signal of problems to come? We assumed it to be simply a normal cough, but perhaps it was more. At the time it did not seem serious.

Today I received my first check ($2400) from Long Term Care insurance with a notice that premiums were waived, on both of us, while benefits are provided! Surprise!

5 DECEMBER, 2002

Winter came early. Snow and ice prevented Barbara (the sitter) from getting out of her driveway the 4th and again today so I took Loretta to the radio station with me both days. I certainly hope the sitter can be here tomorrow because I'm a nervous wreck by 8:30. Loretta sits in the corner very near and continually calls out to Pop (me) even though the microphone is open.

The Home Health aide came by at noon today (5th) to bathe Loretta and she fought us like a lioness. She slapped the wall, becoming very wild and suddenly turning, falling backwards without being injured. It was nerve wracking

16 DECEMBER, 2002

Interesting experiment: bathing Loretta is always a major battle. She absolutely detests having the home health girls remove her clothes. So, last night I suggested I shower with her! Voila! She consented without any objection whatsoever and stepped into the tub without a struggle. Heretofore, when the aides tried to put her into the tub Loretta would scream for me throughout the entire procedure.

17 DECEMBER, 2002

Weeks now seem like days and days like the blink of an eye!

I'm thinking of stopping all drugs except those treating diabetes and blood pressure. I wonder if this conglomeration of drugs is not hurting more than they help.

20 DECEMBER, 2002

I received a notice from Medicaid informing of the procedures to file for assistance. If I understand, Home Health will first file charges with the insurance company and that which the Insurance Company does not pay, Medicaid will.

As this is being written Loretta is sitting near chattering in fractured sentences which are totally unintelligible. It is not a pretty sight, a horrible hell!

Chapter 16

### 2003 – I've learned to not try to understand these moments...

4 JANUARY, 2003

I was offered another, almost unbelievable surprise, today. It's a beautiful sunny day and I asked Loretta if she would like to walk to the mailbox, on the street, with me. She seemed to agree and as we left I noticed the porch light was on. I suggested she remind me to turn it off when we returned. Never would I have imagined she would remember. Surprise of surprises! On our return (several minutes later) she said, "don't forget the light." I've learned to not try to understand these moments, but simply to enjoy them.

5 JANUARY, 2003

This being Sunday and I have unlimited time I elected to give her a shower and shampoo her hair. This usually brings on the fight but today the task was easy. No fuss. No argument. Another magic which cannot be explained, just accepted.

Loretta has acquired a very annoying habit. It seems to pacify her somewhat, but it drives others crazy. She sits and shuffles her feet and counts aloud continuously. Is it to burn off extra energy since she can do nothing else but sit all day? Whatever is the reason, we try to ignore it.

6 JANUARY, 2003

My 81st birthday, today, offers little happiness, but she's still with me and her presence is greatly appreciated and enjoyed, even in her condition. I continue to see the girl inside. The tormented exterior shell is that only. The beautiful blue eyed girl I married 56 years ago is still with me and it gives me enormous pleasure to simply hold her hand and look into those eyes.

I can't begin to imagine the time of her leaving! She continues to sit, shuffle her feet and count aloud. Why? If it pacifies her let it alone.

7 JANUARY, 2003

Today she ripped out my gut, again.

As this is the day I usually take her to the Day Care Center, I placed her in the car and began the short trip. Unbelievably she remembered, as we left home, where we were going. She began to cry and beg that I not leave her there again, and said, "I'd rather be dead." She definitely knew where we were going! I turned the car around and returned home.

She especially remembers anything that does not please her.

12 JANUARY, 2003

While sitting in the recliner counting aloud and shuffling her feet, I asked that she stop. She asked, "What am I doing?"

I explained and she replied, "I'm not doing anything."

So, concluding that it's built up energy from doing nothing, I helped her on the exercise bike, which she vigorously resisted while complaining that her knee hurt. Well, I only thought it may have been a good idea, but perhaps it was not.

The Long Term Care policy continues to pay Barbara to sit, but since the policy includes a 'cap' of $65,700.00, I'm afraid we will run out of coverage in approximately 5 years and I fear I'll need it more then than now.

Little did I guess I would not need it at all in five years, or even four.

16 JANUARY, 2003

Loretta has become more and more agitated, absolutely a bundle of nervous fidgets, and it's about the drive me crazy. I called the doctor's office for something to calm her and the office was closed, probably because of the heavy snow which moved in this morning. The sitter is not eager to drive in the snow, so she chose to sleep on the couch for the night. I'm very appreciative because I don't believe I could survive another morning at the radio station with Loretta.

23 JANUARY, 2003

Today has been one to remember! A two-inch snow fell during the night with a temperature of 3 degrees at 5 a.m. Loretta was awake at 3:45 wanting to get up, so, thinking perhaps she needed to visit the toilet, I helped her to that end. She did have a bowel movement, I dressed her, prepared oatmeal for her breakfast, gave her medicine and she began to complain of a headache and sick stomach.

Barbara, always on time, had not arrived at 5:03. I began to worry that Barbara may have slipped into a ditch and, with temperatures near zero; she could be in considerable danger. I called the Sheriff, described Barbara's car, and a car was dispatched but no sign of her was found. Then, I did what I should have done earlier, I called Barbara's home to discover she had not left and had tried to call me to say she could not get out in the weather. So, it's up to me.

Within a few minutes Loretta informed me she was going to be sick. She did. Then announced she needed to 'potty.' This time we almost made it. We made it to the bathroom, but hardly to the toilet! Her bowels let go when her clothes were only partially removed. I removed her clothing, put her in the shower, scrubbed her with warm water and soap, redressed her, cleaned and disinfected the floor, toilet seat and myself. I certainly pray Barbara can come tomorrow!

Around 3 p.m., Loretta is sitting in her recliner, shuffling her feet and counting. Once she turned to me and asked, "Am I doing it right?" I supposed she was referring to the counting because I have concluded she does not know she is shuffling her feet. She continues to complain of a headache.

4 FEBRUARY, 2003

Loretta spends her entire time counting and complaining of a headache. She refused to eat lunch so I gave her an 'Ensure.'

At about 10:30 last night she indicated she needed to 'pee.' I helped her to the bathroom, gave a shot of Nyquil, put her back in bed and she slept soundly until Barbara arrive at 5 a.m. to find Loretta in a pond of urine. Barbara now must launder the bedding on a daily basis.

25 FEBRUARY, 2003

Loretta is having some difficulty walking. I came home from the radio station at 8:30 a.m. to find her in one of the dining room chairs, which Barbara had moved into the living room. Barbara explained Loretta had slipped from her recliner onto the floor and could not get up. So, Barbara brought in the oak chair on which Loretta could pull herself up.

I don't take her to the Adult Day Care since she cried and begged for me not to leave her there. The new problem, of course now, is her increasing inability to walk. What next? Is it time for a wheelchair?

5 MARCH, 2003

Is it hopefulness or is Loretta more alert and coherent since we, again, are giving her Zyprexa, the crap we are later to learn possibly causes strokes? Since, we think she has not yet suffered her stroke and she seems to appear somewhat improved we will continue while the money lasts. A month's supply of Zyprexa is $240.

16 APRIL, 2003

I assisted Loretta into the room where I have my computer. As I helped her sit in the chair I failed to notice her left foot was underneath the chair and caught on the chair leg as I turned her to sit. As she turned (with the ankle caught) there was a cracking sound as if a stick were being broken. I detected nothing broken and she did not complain. God be praised I did not break her leg! However, it later was learned to be badly sprained.

20 APRIL, 2003 (Easter Sunday)

Loretta can't stand on the injured ankle, collapsed while I was doing my radio program and remained on the floor (since Barbara can't lift her) until I returned. I lifted her, even though I've been forbidden to lift anything because of cataract surgery. She collapsed again this afternoon, but you do what you got to do, as they say.

I worried how to get her in bed, but fortunately it occurred to me to rent a wheelchair.

22 APRIL, 2003

The bottom fell out last night.

Depression descended on me big time. I was channel surfing and happened upon an old John Wayne movie just as the Sons Of The Pioneers (I think) were singing the old song entitled, "I'll Take You Home Again, Kathleen." I realized for the first time that the pattern of my life, now, was pretty well irreversibly fixed. No more would I be free to do those things others do, or even those things she and I enjoy. No more simply going out to a restaurant together. No more simply driving through the countryside enjoying nature and chatting. I cannot enjoy what she cannot. My life has become routine and monotonous. No more future if she's not included. No fun if she can't share. My only pleasure, in the foreseeable future, is attempting to provide any small joy for her. She deserves no less! She continues reciting numbers, not in any sequence now, just numbers, and shuffling her feet.

But, the sadness of that song "I'll take you home again, Kathleen" hit hard.

23 APRIL, 2003

I awoke this morning at 12:30 a.m. I arose, sat down and began to reminisce.

I thought about her laughter, her smile. About how carefree and happy she was. I don't see the smile or hear her laughter anymore. Now it's only sadness. I sit and watch her sad expression with eyes staring blankly into space.

I'm so lonely. She is not here. I don't know where she is, certainly not here. Yes, I see the miserable shell, but where is the happy full-of-love person I've loved for so many, many years?

Then I hate myself because I become frustrated and angry when she does not cooperate as I'm attempting to feed her, brush her teeth, bathing her, etc. I yell at her, mostly because I'm never sure she hears, and her expression displays hurt, because I yell, and I hate myself for yelling. I quickly hug and say, "I'm sorry. I love you." And the expression changes from hurt to confusion. Once she replied, "I was beginning to wonder."

I frequently kiss and hug her and everything seems better for a little while, then the sadness returns and she becomes bored in her narrow little world. And the recitation of numbers will start again. Just numbers, in no proper sequence, just numbers.

Barbara, the sitter, suggested I again take her to the Adult Day Care and I get out and socialize. Socialize? What does one do to 'socialize?' Loretta and I have always done everything together. I'm lonely when we are not together. Being out and away from her is much worse than being at home, holding her hand and listening to her recite numbers. I can't imagine the time when she's gone. Surely she won't leave me lonely!

30 APRIL, 2003

The horror she must suffer not being able to communicate! She has a need and can't express it. I try to interpret her wants by the tone of voice. It's impossible and it must frustrate her beyond description.

I found information about a new drug, developed in Germany, for late stage Alzheimer's. Its name is "Memantine," not yet available in the USA, but found it can be ordered on the internet from a pharmacy in London, UK. Marsha emailed the pharmacist, Leon Unger. Brenda (our other daughter) faxed the required prescription and we ordered a month's supply. It's very expensive, but reports claim it brings back memory and relaxes Alzheimer patients. I'm praying that it works and is not a scam.

20 MAY, 2003

The Memantine (called Ebixa in USA) came by mail on May 7th. We started it immediately as directed; ½ tablet each morning for seven days, then ½ tablet each morning and another ½ at night for seven days. The fourteenth morning she vomited it up. She vomited it back on the fifteenth day. Now she is also incoherent, unable to stand, blood pressure through the ceiling and, obviously, in considerable discomfort. On Friday Christy, the Home Health Care Nurse, strongly advised a doctor see her.

I checked her in at the Marshall County Hospital, where doctors performed routine checks and pronounced her physically O.K. except for a urinary tract infection. The doctor decided to keep her on observation for 2-3 days. When I told him about the Memantine he said he was aware of some who had a bad adverse reaction to it. So another effort fails, but I tried.

The next day, at the hospital, I found her sitting up on the side of her bed and quite verbal. As I entered she called out, "There's my husband, my beautiful husband!" I sat beside her bed, she seemed to be falling asleep when suddenly, as plain as could be, "I've gotta pee!" Amazing!

I returned home and called Marsha with the seemingly good news. Marsha had, moments before, called Four Rivers Clinic about Memantine. The nurse at Four Rivers Clinic said their experience with Memantine had not been good. She suggested starting Loretta again on Aricept. It's encouraging that it's not 'nursing home' yet.

23 MAY, 2003

I brought her HOME! She walked up our front steps (two) with little help, and I wheeled her to the recliner. A little later I attempted to assist her in walking to the bathroom. I helped her to her feet and she promptly collapsed. After several attempts I managed to lift her into the wheelchair and put her in bed. The following morning she walked as well as before the bad reaction.

26 MAY, 2003

Loretta slept until after 7 (after sleeping very little during the night). I changed her, bathed her bottom in warm soapy water, dressed the bedsore of the tail of her spine and prepared breakfast. She ate some, but drank two glasses of water and a glass of prune juice. The doctor suggested I check her blood sugar once a day (at a different time each day). I checked it this morning to find it to be 138.

3 JUNE, 2003

Loretta was awake most of the night. So was I. However, I tried to ignore the talking, muttering and reciting numbers.

She seems to be physically some better since I took her off those crazy anti-Alzheimer drugs (Aricept and Memantine). She isn't continuing to cry and complain of a headache, however she is resisting food.

I visited the doctor with my back, yesterday. He suggested I had some torn muscles as well as arthritis. Perhaps lifting Loretta off the floor, out and in the wheelchair, onto the toilet, etc. is the cause. She frequently will stand on her own until I attempt to help and, suddenly, she will go limp as a rag. Of course I grab her and that must be good for my back!

8 JUNE, 2003

A pharmacist suggested Benadryl would help Loretta sleep so I gave her 4 teaspoons of it last night and she is still asleep at 7:30 a.m.

Barbara has notified me that when Loretta fails to stand and walk I will need to find a sitter who is stronger. Barbara is in her 70's and is unable to do any lifting. Barbara is terrified Loretta will fall and she will be unable to lift her.

So, I advertised for a sitter and received several calls but most are unsatisfactory. If unable to find someone qualified I'll give up my radio program and be available to do the lifting, if needed. Of course, we have no way of knowing the problem will be removed from our hands in the near future.

Sometime around 6 p.m. I gave Loretta 3 teaspoons of Benadryl in some apple juice and, within minutes, she began to inform me she was tired. I put her in bed and she was asleep within minutes.

6 JULY, 2003

Little has changed in over a month. Loretta seems a little more confused and is showing considerable trouble eating. She sleeps very little at night, and fails to recognize me.

Last night she continued to shuffle her feet (very annoyingly preventing me from sleeping) and muttering. After approximately 3 hours I moved to the adjoining bedroom from which I could still hear her. I, only half asleep, checked on her at about 2 hour intervals until 7 a.m. when I chose to get her up, thinking she needed to be changed. She either refused to stand or could not and when I put her on her feet she collapsed. I returned her to the bed, changed her clothes, put her in the wheelchair, turned around to turn off the closet light, heard a sound like a truck had hit the house, turned to see her sprawled in the floor with a terrible bruise on her left cheek beneath the eye.

How am I going to explain to Barbara and the Home Health nurse I did not hit her? In any event, I picked her up, placed her again in the wheelchair (this time strapping her in). I tried to feed her breakfast and she fell asleep. I moved her to the recliner where she slept most of the day.

27 JULY, 2003

This has been a very discouraging month. Loretta is now beginning to reject food. She seems to chew a while, anything with texture and pocket it in her cheek. If we continue to inject more food she holds it until she chokes. In looking back it now is becoming obvious that the muscles in her throat have been affected. A Stroke?

Another newly acquired act is, when on the toilet, even during a bowel movement, she will stand. It's needless to describe the problems this causes! Once she stood, falling in the floor and did not seem to know what she had done.

Our new doctor (had to change when our old family doctor retired) insisted that I am not doing Loretta any favor by keeping her home. He pointed out "that in her condition" she needs better care than I can give her at home, even with help from Home Health Care and full time sitter. Nursing Home? Is it unavoidable?

Her refusal to eat solid food seems to be causing a noticeable loss of weight and those pressure sores simply won't heal.

6 AUGUST, 2003

I'm seriously thinking about attempting a trip to visit Geoff (our son) and his brood in Florida. Loretta won't appreciate the visit but, perhaps I can. Marsha (daughter) will travel with us.

Loretta seems a little more alert in the few days past. She even talked more sensibly a few times so that we are trying to think of anything we may have changed that brought about an improvement.

She gave me a very interesting response today while feeding her. I asked if she would like a drink of water. She seemed not to hear me so I raised my voice and repeated the question. There was still no response so I spoke quite loudly. Still no response but I noticed a change of expression so I lowered my voice to somewhat below normal and asked, "Can you hear me?"

She answered, "Yes, I hear you."

Bewildered I asked, again in a very low voice, "If you hear me why don't you answer?" Then, again, in a low voice I asked, "Do you want a drink of water" and "All you need to say is "yes" or "no." Again, "Do you want a drink of water?"

I almost fell out of the chair when I heard her answer, "Yes, I'd like a drink."

What a revelation? She hears but simply does not know how to answer!

I remembered that, a few days ago, I read that experiments had indicated Ibuprofen and Vitamin E seemed to have a positive effect. As a result I began giving her two 200 mg Ibuprofen, 400 I.U. Vitamin E, 400 mcg of Folic Acid and 6mcg of Vitamin B12. Did it help? I shall continue the formula and pray for the best.

The Home Health Nurse checked her blood pressure today and found it to be 80/60. I was concerned that it seemed low but the nurse said it's good.

10 AUGUST, 2003

Loretta is sleeping late. She's on her back, mouth open and snoring quite healthfully.

I bandaged the long-lasting pressure sore last night and, for the first time she complained. She clearly said, "That hurts." So, she can still express herself when in pain.

14 AUGUST, 2003

My sweetheart took a very nasty fall tonight. I was dressing her for bed when I left her sitting on the edge of the bed while I turned to the closet for a piece of sleepwear. Seconds, only seconds, passed when I heard a movement and turned to see her diving, face down, into the carpet. She split her lip and badly sprained her left hand. I lifted her again onto the bed at which time she asked, "Why can't I go over there?" while pointing at nothing in particular. The hand rapidly swelled so badly it was necessary to remove her wedding band by cutting it off.

The swollen hand led to a huge misunderstanding, later. She began to pull the left arm into her side and clench the fist causing me to think it a result of the fall. Later I concluded it was the stroke, unrecognized at the time.

17 AUGUST, 2003

Loretta continues sleeping at 6:30 a.m. I think she slept very little last night. I checked on her at 8:30, 10:30, 12:30, 2 and 4 a.m. At 4 I noticed she had kicked off her cover and seemed to be partially awake. As I attempted to pull the covers over her she mumbled, "I love you."

20 AUGUST, 2003

Can the following be associated with the fall, the swollen left hand? Yesterday she began leaning to the left (later it's to the right). If sitting, she will almost fall out to the left. When on her feet, she needs to be braced against falling to the left. I wonder if blood pressure is affecting her. But I checked and it was 80/50 and the Home Health Care nurse thinks that is no problem. I wonder.

3 SEPTEMBER, 2003

Okay, we're going to Florida and leaving today! It is 4:30 a.m. Loretta and Marsha are asleep, Marsha on the couch. Our plan is to leave at 8 a.m. I'm really apprehensive about such a long trip with Loretta as she is totally unpredictable. I wouldn't dare without help.

7 SEPTEMBER, 2003 IN DELEON SPRINGS, FL

We survived the trip in fine fettle. Loretta slept throughout the trip. But, she is awake now. Is she ever awake! These grandchildren, ranging in age from 3 to 12, are smothering grandma with love and affection and she loves it! But she still doesn't want me out of sight. I'm uncertain she knows what is happening, where she is, or who these little people are. It doesn't matter, though, because she is smiling from ear to ear. It's wonderful to see that smile again!

The next morning – the excitement of being with these youngsters kept Loretta so excited she could not fall asleep until very late last night. However, she is making up what she lost, today. It is 11 a.m. and she's still asleep.

8 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

The entire family, including Loretta, watched Little League baseball practice in Deland then on to Dubarry for softball practice. Loretta seemed much more alert, even ate a burger and drank a milkshake with the kids.

I was preparing her for bed around 10 when she looked at the smallest (3) and said, "Goodnight, sweetheart." What is happening?

9 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

To Caregiver: Sage oil extract, touted to stimulate blood circulation, may be a 'magic elixir' worth trying.

Something new has entered the mix. I heard that sage oil extract may help. We found some and started it this morning. She also ate an egg, a slice of bacon, a piece of toast and drank a small glass of milk. This experiment may help Loretta. She beams when these little ones are around.

Marsha caught her plane home this morning out of Daytona. She cried, saying, she will miss coming to see her mom each Saturday. Well, I suppose I'm here until October 25 or the first of November when Marsha's return reservation is booked. I would not dare try making the trip home without help.

11 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Loretta is certainly responding to these little people. She seems to better express herself to them and they seem to better understand what she says. Austin (9) hugged her today and asked, "How are you doing?" She answered very clearly, "I'm fine, how are you doing?" Austin came running to tell me.

On several occasions Loretta has spoken to the little girls, Hannah and Sophia, calling them 'sweetheart' or 'darling.' It's tremendously refreshing to hear her make even small statements. Her problem still seems to be when she tries to put together a longer thought. She often will start a sentence very clearly then trail off in unintelligible gibberish. She is now on the highly touted sage oil extract, with vitamin E and Ibuprofen, in addition to the prescriptions including an anti-biotic. The doctor stopped the Neo-sporin saying some are allergic to it.

12 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Loretta slept well last night and awoke at 9:30. Geoff and Sheri had left very early to take Sophia to a doctor. Since Loretta missed yesterday's bath I elected to give it a try (Sheri has been performing the feat). I walked her into the downstairs shower, washed her hair and bathed her thoroughly. Then I fixed a half banana in a bowl of dry cereal, gave the morning dose of medicinal stuff.

She amazed me while I prepared her breakfast. Andrew walked to her, put his arm around her and said, "Good morning, Nanna." She turned to Andrew and said, "Well, hi there little young man. How're you doing?" Andrew called out excitedly to me, "Did you hear that, papoo?"

Sadly, the foregoing was only a momentary experience, because in a few moments, she reverted to the gibberish. It took the better part of half an hour to persuade her to eat about half the bowl of cereal and drink the small glass orange juice.

13 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

In many ways Loretta seems to communicate better with the little ones. Could it be their language is more the same? I, sometimes, can't understand what they are saying, either.

Loretta has been sleeping sometimes until 10 or 11 a.m. However, this morning she was awake and squirming at 5. I got up, walked around to check on her and found her uncovered with her pillow in the floor. I replaced the covers and the pillow and, since I was on my feet, I decided to visit the bathroom. When I returned she was in the floor on her knees beside the bed trying to get to her feet. I helped her return to bed thinking she may fall asleep. I went to the kitchen to put on coffee, returned to her bed and found her, again, on the floor saying in an excited tone, "Get me out of here!" So, I took her to the bathroom, dressed her, and unbelievably, she walked almost unsupported to the living area!

She ate an egg, one slice of bacon, one slice of toast and drank a glass of orange juice. (Last night, it should be noted, Sheri had fixed a great dinner and Loretta would not eat.)

14 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

We (everyone) went to another baseball game last night. Loretta seemed to enjoy it even though the boys lost 13-2. Once, as she sat between Geoff and Sheri, she leaned around Sheri, looked at me on the other side and asked, "How are you doing, professor?" Then, the next morning, as she sat on the side of her bed, I asked, "do you need to go to the bathroom?" She answered, "That sounds like a good idea." (No one will ever know how wonderful it is when she can express herself, even a little.)

16 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

She slept until 10. I helped her to the toilet, changed her, prepared cereal and banana for breakfast, then the daily medicine in applesauce. (She has not had a bowel movement in 5 days even with a stool softener so, today, it's prune juice.)

I released the wheelchair brakes while I washed breakfast dishes. She moved around a little until Sheri came downstairs and took Loretta, with the kids, into the classroom for schooling (Sheri home-schools). Loretta sat and listened for several hours and, seemingly, enjoyed every minute.

Sometime about 3 p.m. I supposed she may be becoming tired in the wheelchair so rolled her into the living area and helped her into the recliner thinking she might sleep for a while. Almost instantly it occurred to me she may want to visit the toilet. With a little help she walked to the bathroom and I manipulated her to the stool just in the nick-of-time. Thirty seconds later and I would have had a big problem! It seems the 5 days of stool softener and two days of prune juice had their effect.

Sheri suggested I take Hannah (the second youngest) to her ballgame while Sheri sat with Loretta. When we returned Sheri had bathed her, washed her hair, and brushed her teeth and when I came in Loretta was watching TV. I sat beside her, kissed her and asked, "How are you doing, mom?"

Now came another wonderful surprise; she answered, "Fine, but I could use a big hug!"

To Caregivers: Frequent hugs are very important. Do it often.

18 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Sheri, again, took Loretta to the classroom and left her with the three little ones. I looked in on her around 10:30 and she was fast asleep with her head tilted in a neck breaking position. I rolled her into the living area, lifted her from the wheelchair and placed her in a recliner. I don't believe she awakened.

Geoff and Sheri had previously insisted that we move in with them and I wished to know how they felt now they had witnessed mom's condition, so I asked each, separately, the same question, 'Is mom better or worse than you expected?" Without hesitation they each answered, 'much worse.'

Geoff went on to suggest, what I already know, that, in his opinion, mom was going to need much more intensive care very soon.

There's no question now, in my mind, I need to return her to Benton, Ky. I have help already established at home that would be necessary to arrange, here, from scratch. And there's a lot of doubt it would be as convenient, as economical or as good.

19 SEPTEMBER 19, 2003 FROM DELEON SPRINGS, FL

Geoff suggested yesterday that I could return to Kentucky without Loretta. No one seems to understand; I promised her many years ago that 'where I go, she goes.'

Loretta had a very bad night. I had moved our single beds side by side so I reach over and hold her hand. (She always relaxed and fell asleep more quickly.) But, last night it didn't work. I kept hearing her stomach rumble and churn causing me to think perhaps she needed to go to the toilet. I listened for a while, got out of bed and took her to the toilet (with some very angry protests) and as I sat her on the toilet she, very angrily said, "You bastard! I never expected anything like this! Who are you?" Then she began to call for her mama, "Mama,Mama." The truth was that she didn't need to toilet and, very much resented being forced. That was last night. This morning she awoke with both feet dangling off the bed near the floor.

20 SEPTEMBER 20, 2002 FROM DELEON SPRINGS, FL

To Caregivers: Loretta seems more aware of conversations than we realize.

Geoff and Sheri continue to insist that I return to Kentucky alone and leave Loretta. I continue to explain why I can't. And, often, when I walk near Loretta she reaches out, takes my hand and says, "Please don't leave me." Has she understood the talk? Also, she can seem very upset and I can sit beside her, take her hand and she will put her head on my shoulder and immediately relax.

There is absolutely no way I could bear leaving her behind. I seem to be her only connection to the world she remembers. She, since the beginning of the Alzheimer hell, seems to panic if she thinks of being left alone and unable to find her way home. Friday night, at a ballgame, she leaned over to me and pleaded, "Please don't leave me."

21 SEPTEMBER 21, 2003 FROM DELEON SPRINGS, FL

Last night, again, another ballgame, Loretta asked, "You're not going to leave without me, are you?" There's no way I could! Imagine the further hell she would suffer if she felt the last connection to her world had abandoned her! Never will I let that happen. I will stay with her until the end. And I did!

Now, obviously not convinced that I will not leave her, she is totally upset and when I attempted to put her to bed she began to fight me and angrily said, "Get out of here and don't come back!"

So, I cannot bear her thinking that I might abandon her. There now is no choice. Where I go, she goes, whatever tomorrow brings.

_To Caregivers: The following has very little to do with Loretta, but everything to do with my indecision about what I should do. The 20_ th _was Andrew's birthday and a very strange day._

First, I awoke to discover Geoff and Sheri had left at daybreak for a softball tournament with no mention of it to me. Andrew, Austin, Hannah and Sophia were left with us. Around 3 in the afternoon I thought all would be hungry so I prepared a lunch. I helped Loretta eat while she called out to some imaginary someone in the kitchen area named 'Polly.' She repeatedly called Polly to exclaim that 'they don't have any eggs.' Meanwhile, the food I prepared for the kids sat untouched until 3:30 when I asked why they didn't eat. I heard for the first time about a "cookout."

At 4 p .m. a strange man and little boy came in without knocking and, without a word, sat on the couch. I am absolutely stupefied! I asked if I could help them and received no answer. I began to get nervous when Geoff, Sheri and Sara came in and, without a word to me, went upstairs. Now I am mystified as well as stupefied!

Within a few minutes Geoff came downstairs and, as though I'm not there, asked the strange man if he would like to ride to the store to pick up some things. I particularly noticed he did not ask me to go. Was I suddenly invisible?

_Later, other strange people began to come in, Geoff came back and began cooking burgers, dogs, etc. and I'm still totally uninformed and bewildered. It began to look like a party with Loretta and me only as observers. Then I saw the giant birthday cake! It was Andrew's 12_ th _birthday!_

When the crowd gathered the kids congregated in their group and do what kids always do. The women assembled in the kitchen area chattered like magpies and the men gathered outside with Geoff while he cooked. Loretta and I were left alone as I sat and held her hand to keep her calm and, I might add, to calm myself also.

When food was ready Geoff finally noticed I was present and told me to help myself. I explained I didn't know about the party and had eaten just prior to their arrival. He looked surprised I didn't know about the cookout/party.

Now, here's the point of this entry. It cleared my mind about leaving Loretta behind without me to care for her. Had I not been present who would have looked after Loretta?

I had been told in earlier discussions that if I left her behind they planned to move her upstairs into her own room. So, on this occasion what would the arrangement have been? Would she have been locked in her room upstairs while the party progressed downstairs? If brought downstairs to the party, who would have looked after her needs?

I was there, in this instance, to sit with her, hold her hand while all others were doing the party things. The two of us sat together, alone and mostly ignored, wondering what was happening, seemingly invisible.

Geoff came by once and explained he was upset that I hadn't been told about the party. I was upset, too. And to think that only a few hours earlier we discussed the possibility of my returning to Kentucky without her!

_Loretta and I went to bed at 8:30 but couldn't fall asleep because of the noise. (Fun was everywhere_!)

The birthday party made it very, very obvious that Geoff and Sheri absolutely have their hands full without taking on the additional burden they would endure with Loretta. No fault of theirs. Their love and affection is obvious, but they certainly do not need another two kids to look after. So, for Loretta and me, it's back to Kentucky.

23 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Loretta went another 5 days without a BM. Very soon after I fed Loretta breakfast of 1 egg, 1 slice of bacon, 1 slice of toast, Sheri suggested she bathe her, which she did.

24 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Loretta enjoyed a moderately good day yesterday. She ate well and seemed more relaxed. But last night was a hair raiser! Loretta seemed tired so we were in bed at 8. Meanwhile one of the children was playing a computer game down the hall which made weird noises.

I placed Loretta on her left side facing a chest pulled against her bed. I climbed into my bed. Later I heard a scratching noise like a dog scratching on a door. Was it the computer? I fell asleep. Again I heard the scratching sound and realized lights were off in the computer room so it was not the computer.

I listened a minute and heard the sound, got out of my bed and walked around to her bed to discover she was partially in the floor, not under any cover, hanging onto the side of her bed and scratching on the chest. I lifted her into her bed.

When she realized I was helping her she weakly murmured, "Oh, you're here." (Not with surprise. Not as a question. Simply pleased.) I looked at the clock and it was 1:45 a.m.

How long had she been in that, what must have been a terribly uncomfortable position? She immediately fell asleep when back in bed.

It was reported on Fox News tonight that Memantine, the Alzheimer drug from Germany, is to be approved by the FDA for sale in the USA. The announcement reported it to be very effective in 'late stage' Alzheimer's and we have a two month supply we ordered from the pharmacist in London, England. With prayer, could it help, or are we in for another disappointment?

26 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Loretta continues to surprise me. Perhaps a word more fitting than surprise is the word confuse. Often she seems to understand very well what is said and done in her presence. Example: Located between the big couch and the television there's a huge coffee table on which there are numerous items, mostly left by the kids. Last evening she was in her wheelchair, I was in a chair pulled alongside and Geoff was sitting on the couch. Loretta rolled to the coffee table and picked up a little coloring book then rolled back to her starting position. She briefly looked at the book and made a move as if to drop the book on the floor. I said to her, "No mom, not on the floor. Why not put it back where you found it?" Without hesitation, she did! She clearly understood as Geoff looked at me and I looked at him. We were both confused and surprised.

Also, in the preceding few days she has said to me, "I'm ready to go home," or, "let's go home." Once I answered that 'we are home' and she looked around the room as if she definitely knew the difference.

And, almost unbelievably, she is walking better. One of us is beside her if she chances to stagger, but she's walking with more confidence.

Is it the sage oil extract? Is it the activity around her?

Sheri and Geoff continue to insist I leave her with them while I return to Kentucky to take care of needful business. How can I leave her, when she looks for me each time someone else attempts to help her? If Sheri tries to assist her to the bathroom and she sees me, she walks to me instead. When she becomes agitated I sit on the couch beside her, hold her hand she calms down and usually falls asleep.

So, how could I leave her? She pleads with me 'not to leave me.' She deliberately looks to me for reassurance and comfort and she is noticeably more aware and understanding of her surroundings. The conclusion is very simple. If there is only one second of pleasure left for her in this life, I will not be guilty in depriving her of it. Each second of pleasure now is a blessing I don't want her to miss.

26 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

She slept until almost 11. She, with very little help from me, walked to the bathroom, I dressed her, washed her face and hands, walked with her to the dining table where she ate a double pack of instant oatmeal. I released the brakes on the wheelchair and she explored the huge basement area for almost two hours.

Loretta seems to put words together more coherently with each passing day. In the afternoon I sat with her on the couch. When I arose to stretch she pleaded, "Please sit with me. I don't have anyone to talk to." I sat down and said, "O.K., talk to me." Again, is it the sage oil extract? Something has brought obvious improvement in several ways.

27 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Last night was not so good. For some reason she failed to recognize me and frequently asked, "Who are you?" Last night, Friday, I helped her in bed at 10. She fought to get up, throwing off the covers, swinging her feet off the bed. This continued until 1 a.m. before she fell asleep. Surprisingly she was up at 8, then at approximately 11 a.m. I was near her chair when she said, "I wish I could go," and fortunately I interpreted her remark correctly and took her to the toilet arriving in the nick of time. She now must feel better!

Aside from often being asked, "Don't leave me," the foregoing is enough reason not to leave her in someone else's care.

Later, a happy smile; Loretta relishes Chinese cuisine and she is about to enjoy another little pleasure. After work, Geoff came home with an enormous amount (it takes one for this crowd) and we gathered around to enjoy. Sheri thought that since I had just fed Loretta, she would not be interested in eating again so soon. Wrong. Also, knowing how she loves Chinese, I could not eat without offering some to her. She ate like she had not eaten in days. She loves Chinese food!

The small fries are becoming less and less attentive. They are returning to the normal kid things and they are having less influence on Loretta's behavior. It must be expected that kids will be kids. It must be.

29 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Last night we witnessed a rockin' birthday party. There were approximately 30 laughing, joking, singing guests and I attended Loretta. She whispered once, "I'm ready to go." I enjoyed a laugh, because I understood why she was ready to go.

Loretta slept late this morning after a very rough night. After the party ruckus we retired. She tossed, turned and muttered most of the early hours. She would reach over to my bed, slap it and pull off my cover so, needless to say, I did not sleep well either.

30 SEPTEMBER, 2003 FROM DELEON SPRINGS, FL

Sheri cared for Loretta today while I was with Geoff. Sheri bathed her at noon and found an unusual blister on Loretta's thigh which looked like an insect bite. We observed it for the day and the following day it was gone. Sheri put Loretta in bed on her back with a pillow under her knees. This helps in some ways and causes problems in other ways. On her back she seemed to be choking several times during the night so I removed the pillows, rolled her over on her side and she slept through the night. The small glass of prune juice each morning has relieved the B.M. problem, in one instance a little too well. She has 'gone' 4 days regularly. Once I failed to take her soon enough. She ate very little today. She managed a small bowl of oatmeal about 10 a.m. and half of a roast beef sandwich at 3 p.m. Sheri prepared spaghetti tonight, gave Loretta a taste, she spat it out and would take no more. So I gave her a can of 'Ensure.'

1 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Loretta's Day was seemingly pretty good. Sheri bathed and rubbed her in lotion. I fed her oatmeal for breakfast, then a cheese sandwich at 1. Sheri didn't know about the cheese sandwich and fed Loretta another lunch at 2:30. Then Sheri prepared grilled pork loin, creamed potatoes, turnip greens and fresh corn-on-the-cob. I cut off the corn and Loretta ate again.

This afternoon, Geoff and I entered and as we approached Loretta, she asked, "How are you doing?" Then, as she sat in the wheelchair later, she turned to me and asked, "Can you give me a hug, please?"

To Caregivers: A hug, a touch, the holding of a hand, any kind of physical contact seems to be enormously important. It seems to offer some reassurance. In the nursing home, later, Loretta held out her hand to every passerby simply needing to touch anyone.

2 OCTOBER, 2003 FROM DELEON SPRINGS, FL

I'm heading home to Kentucky, I hope. Sheri and Geoff could not be kinder or more attentive and generous, but, as the old song goes, 'There's no place like home.' I'm tempted to head north, with my sweetheart of course, even if I have to dare it alone.

Perhaps I can hold out for another three weeks when daughter Marsha can come to help. Hope so.

Loretta severely injured her left hand today. She entrapped her hand in some exercise equipment. I freed her hand and found a nasty, but not dangerous, cut.

She also has begun the severe leaning stature again. She can't walk or sit straight.

In looking backward, even without any medical knowledge, I'm guessing she continues to suffer, at least, some mild strokes. Future problems suggest the conclusion. It's important for caregivers to be alert to these possibilities.

3 OCTOBER, 2003 FROM DELEON SPRINGS, FL

It was a very bad night. Loretta in bed at 9 and slept until 10:30 and, from 10:30 until 3 a.m. there was no sleep for either of us.

She talked aloud, slapped and scratched on a chest of drawers near her bed, reached and pulled a box of medicine onto her head. Meanwhile, I was up several times returning her feet under the covers as she slapped at me and commanded me, "Get out of here! Leave me alone! I mean it! Get out and stay out!"

Finally, I simply sat on the side of the bed and held her hand for an hour until she fell asleep.

I think yesterday, including last night, was the roughest until now. If and when she's into the "leaning" it's almost impossible to keep her on her feet or in the chair. When in the wheelchair, she likes to roll around and pull things off tables, overturn chairs or, believe it or not, rearrange furniture.

And the swollen left hand has begun to hang limply at her side. We thought the hand problem was due to the injury. _I now think we were wrong!_

4 OCTOBER, 2003 FROM DELEON SPRINGS, FL

After such a rough night Thursday, Loretta slept until 2 p.m. yesterday. It now seems logical to allow her to sleep when sleepy whether day or night. I've tried leaving a light on at night when she's restless. It seems to calm her down somewhat. She seems sleepy about 9 p.m. last night (Friday), so to bed and she slept through the night, but she is less alert and continues leaning to her left.

5 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Loretta is awake at 8 a.m. so I maneuvered her to the toilet, changed her, took her to the kitchen and gave her a glass of prune juice and another of water. Interesting note, as I'm typing this, Loretta is sitting close, patting my shoulder, rubbing my right arm as I try to type, and kissing my neck.

6 OCTOBER, 2003 FROM DELEON SPRINGS, FL

If I needed a reason to think I should take Loretta home (rather than leave her in Florida) I had it handed to me yesterday in a major way. There were several, including Sheri's mom and dad, over for dinner. All are milling around, visiting, etc. and Loretta is completely confused. As she sits in the wheelchair bewildered I walk nearby. She reached out, took my hand and asked almost in a whisper, "Can I sit by you for a few minutes?" I sat beside her and she became calm and relaxed. There's no way I leave her alone again, anywhere. Never! So, if I go she goes!

7 OCTOBER, 2003 FROM DELEON SPRINGS, FL

I've started to count the days until we return to Kentucky. Today +19.

8 OCTOBER, 2003 FROM DELEON SPRINGS, FL

I was with Geoff, at work, a big part of yesterday (Tuesday). I returned with Geoff to learn that Loretta had spent most of the day upstairs. Sheri said Loretta ate a big lunch and then Sheri, with Sara's help, walked Loretta around the huge wrap-around porch. Then last night was a tough one.

We retired around 8. Loretta tossed and turned and fussed, pulling the covers off, scratching on my pillow and dangling her feet off the bedside until 4 a.m. At about 4 I heard her say, "I need to go to the bathroom." I took her. Nothing happened.

Back in bed I had a rare laugh. She repeatedly slapped on my bed, as I'm try to sleep, until I was thoroughly irritated. I slapped her hand whereupon she excitedly said, "Gosh darn! We've got to do something about that, whatever it was!" Obviously she did not know it was I who slapped her hand, and perhaps just as well she didn't.

I don't think I'll report, word for word, what she said yesterday when she accidentally knocked a glass of ice water off the table in her lap! Yep, she has become amazingly feisty in the preceding few days and it's delightful to see.

It's fortunate I don't know how much worse and more heartbreaking things are to become in the very near future. The times for laughter are soon to be no more. The left hand and arm are becoming more withdrawn and unused. Loretta keeps the left hand tightly against her waist and the hand is becoming more tightly clenched. Certainly, if must be resultant of at least one stroke, perhaps more.

9 OCTOBER, 2003 FROM DELEON SPRINGS, FL

At about 7:30 this morning I heard sounds like laughter from the bedroom area so I checked and yes, she was awake. I took her to the bathroom, changed her, put on a dress, shoes, etc. and helped walk her into the living area. I gave her a glass of water and some juice. I then ask if she would like some bacon and eggs.

And her answer amazed me!

She told me, "I think I've had enough." I was sure I had misunderstood so I proceeded to fix breakfast. I placed breakfast on the table, rolled her chair over and attempted to put a bite in her mouth. She accepted, chewed and swallowed it and then, as plainly as could be, "I don't think I want any now, maybe later."

I almost fell out of my chair! I even ask her to repeat it so I asked, "You don't want to eat now?" And she answered, "Yes, I don't want to eat now."

To Caregivers: Be patient. Give the victim of this unbelievable disease time to understand what is happening so they can formulate an answer.

I am somewhat dumbfounded and wonder 'is the effect of the stroke wearing off?' Something seems to be happening!

Needless to say I was amazed.

Sheri is absolutely great with Loretta. Loretta has a mild infection of the edge of her ear which simply does not heal. Sheri has tried multiple remedies. Nothing seems to help. Sheri bandages the ear repeatedly and Loretta repeatedly removes the bandage. Sheri replaces the bandage and scolds Loretta, like she's a child, if she reaches for it. When Sheri scolds, Loretta drops her hand. Eventually Loretta forgets the ear and the bandage remains in place.

10 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Today +16 and homeward bound!

Bewilderment and disappointment from exhilaration and happiness seems to be the pattern. Yesterday morning Loretta was smiling and appeared to feel much better. By nightfall she was slumping in the chair, mumbling incoherently and appeared afraid of something. I expected to have another sleepless night but, surprisingly, she was asleep almost be the time her head hit the pillow.

11 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Loretta has provided me with several 'spooky' moments. (And you will later learn, continues to do so for months after death.) In this instance, on this day, it's 3 a.m. and I had to make a trip to the bathroom. The area we occupy in this huge house is configured in a way that I can never determine the exact direction of a sound. A sound seems to come from all directions and, at the same time, seems to emanate at your side.

I was in the bathroom when I heard, "Hello" (pause) then again, "Hello." Now, almost in a shout I hear, "HELLO, JUST A MINUTE." It did not sound like Loretta's voice and it sounded as if it were originating from the corner of the bathroom. Needless to say I was a little uncomfortable. Perhaps scared is the more fitting word.

I returned to the bedroom and she seemed to be talking, but asleep. I crawled back into my bed and in a few seconds she called, "Mother. Mother." Then later it's "Papa, Papa?"

It was completely dark so I could not see, but I noticed considerable squirming so I arose and turned on the lights. She was sitting on the side of her bed. I walked around and when she saw me she smiled and seemed to relax. I placed her on her pillow, pulled the covers over her and she said, "Thank you. Thank you."

Again I held her hand as she counted herself asleep.

13 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Yesterday Sheri kept Loretta while Geoff took all the rest of us 'kids' out for a special kid's meal at a local burger place. We were treated to a $1.50 burger and received a free plastic spider for Halloween. The burger bun was the size of a dollar and the burger the size of a half dollar. The boy's eyes, when they opened the buns, were bigger than the burgers.

We came home hungry to find Loretta in the big recliner after Sheri had given her a shampoo and bath. Sheri excitedly told us that Loretta had said, "You gave me a bath. I like visiting you." I also noticed the ear has healed, thanks to Sheri's attention and the swelling in her limp left hand appeared to have gotten better. A very rough day followed.

14 OCTOBER, 2003 FROM DELEON SPRINGS, FL

We are making plans to go home!

15 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Loretta slept until 11 a.m. yesterday. When she awoke I took her to the toilet for the first B.M. in five days, dressed her, fixed breakfast of 2 eggs, 2 bacons and toast. She seemed to enjoy every bite. After about two hours motoring in the wheelchair I surmised she would be ready for a change so I sat her in the recliner thinking she would sleep. No sleep, so back in the wheelchair for the afternoon.

Yesterday I cooked a big pot of white beans, ham and Tex-Mex corn bread. Loretta seemed to greatly enjoy it for I noticed how quickly her mouth came open when a spoonful started toward her. Geoff ate 3 platters full. The boys did as well. However, the girls simply would not taste it and the smallest took a small bite of the cornbread and spat it out. Sheri took a plate full upstairs, to probably flush it down the toilet. What do city women know about country living?

The importance of the event was that Loretta ate well and enjoyed it.

16 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Our trip home delayed by another ball tournament in Claremont. To Geoff and Sheri nothing can interfere with the kid's ballgames so, again it's "play the cards you're dealt."

Loretta slept until 2 p.m. yesterday (Wednesday) and for the balance of the day, Sheri cared for her needs and had maneuvered her upstairs into a big leather recliner where she sat, half asleep, until 9:30. I helped her downstairs, tucked her in and she looked at me and said, "Please stay with me." I assured her I was not going to leave her so she closed her eyes and fell asleep.

I believe she has lost more weight. I suspect she's down to 120. No scales on the premises, but her ribs are showing. I also note the swelling in the left hand is gone, but the hand remains limp and, as we'll see later, she begins to draw it against her waistline a little more each day.

17 OCTOBER, 2003 FROM DELEON SPRINGS, FL

"Thank you for doing this."

Lord, I love this lady! She slept until 11 a.m. yesterday. I helped her to the bathroom, dressed and fed her some oatmeal. After a few bites she turned to face me and made my day. She very plainly said, "Thank you for doing this." Then later, as I offered another bite, instead of opening her mouth she closed it and I almost spilled the food. She apologized, "I'm sorry."

Beyond causing me to smile with pleasure, when she is able to speak her thoughts, it seems to give her even greater pleasure.

What a miserable hell it must be otherwise.

I experienced real sadness last night. I helped her with the evening meal, freed the brakes on her wheelchair and let her roll around this 3,000 square foot area. I ignored her and became interested in something on television. I noticed she had become very quiet. I saw she had rolled the chair against one of the steel support posts (we're in the basement) and she was hugging and caressing the steel post as if it were someone.

She was being neglected and needed to be touching, or being touched by, anyone. Even a steel post was better that being completely alone! I retrieved her, sat her on the couch beside me, held her hand and she immediately relaxed, leaned over to me and almost whispered, "Please don't leave me." I again attempted to reassure her that "where I go you go." Then, "Please take me with you."

"O.K. don't worry, soon we're going back home."

18 OCTOBER, 2003 FROM DELEON SPRINGS, FL

The parties. I never knew from whence they came! Out of the woodwork like termites? Out of the sky like locusts?

Suddenly, without warning yesterday, the house was full of screaming, running, yelling, jumping, and laughing kids. Since Loretta and I occupy the basement/recreation area we were in the center of all the hilarity, like it or not. At one time I tried to count them, but it was like trying to count a stampeding herd of cattle. At least twelve, ranging from 18 months to 14 years, would suddenly disappear for 15-20 minutes and then reappear like buffalo gone mad. They once raided the refrigerator eating everything except the metal shelves, then stormed to the game tables, yell, laugh, and argue for 10 minutes and again disappear, leaving me with jangled nerves. When the nerves somewhat settled, the cycle would be repeated over and over. Loretta unbelievably slept through it all.

20 OCTOBER, 2003 FROM DELEON SPRING, FL

Yesterday was interesting. Sheri's family came with several party-type trays of food at 2 p.m. Loretta and I had satisfied ourselves, around noon, with my left-over ham and beans along with fresh cornbread. Loretta ate like it was her last meal.

When the crowd arrived Loretta became confused and seemed afraid of the sudden crowd of humanity. I sat beside her on the couch and held her hand until calm.

Whereas, earlier Loretta leaned off balance to the right, now she leans to the left and has become increasingly more pronounced. If I try to help her walk she falls to the left. When sitting in the wheelchair, she hangs over the left rail like a rag doll. I place a pillow between the rail and her ribs, but she removes it.

Sheri caused me to feel a little inadequate (if not a little stupid) yesterday. Since it became necessary to powder Loretta's pills and feed them to her in apple sauce, I've laboriously crushed them in a no good little plastic contraption made for that purpose and sold at your pharmacy. _Sheri crushed them in her coffee grinder._ How very simple, and I have one at home, never used!

23 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Loretta's was a normal day yesterday. I can't help but notice the improvement in her color, in her alertness and in her eyes. Is the sage oil extract helping? Information suggests its primary purpose is to improve blood circulation. It should be given 3 times daily at the rate of 28 drops each time.

To Caregivers: The sage oil extract was continued until Loretta was admitted to the Nursing Home where they prohibit anything not prescribed by a doctor. I wish we could have continued.

Well, daughter Marsha is due Saturday to help me take her mom home.

While I was feeding Loretta lunch Thursday (Oct 24) she suddenly put her hand to her chest and plainly said, "I don't feel well." I withheld the food for a few minutes and asked, "Feel better?

"Yes," she answered then ate a bit more and said, "I've had enough."

I suggested to my son last night that the sage oil seemed to be helping. Still trying to convince me to move in permanently, he said, "No, it's the stimulating activity around here."

Could it be? I don't think so.

Sage oil/stimulating activity or whatever, she is showing some very encouraging signs. Last evening, as we were sitting side-by-side watching a ballgame (at least I was) she appeared to be ready to retire so I asked, "Are you ready for bed?" She clearly understood and nodded in the affirmative.

24 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Loretta remained in bed this morning until noon. I looked in each 20-30 minutes. At noon I found she had thrown off the covers and was attempting to get out of bed. I leaned over to joke about her sleeping so long and noticed she was crying. I asked why and she answered, " _I'm so afraid."_ As I helped her to her feet I asked, "Afraid of what, mom?"

As we walked toward the bathroom she said, " _I don't know... Lord."_

Later, as I offered her some water she said, " _I wish you could put it back."_ I asked, "Put WHAT back, Hon?" She said, " _I don't know. I just wish it was back the way it was!"_

Sheri then told me that Loretta, yesterday, had said, "I wish I could get well again."

While feeding her I put my arm around her shoulder and told her, "I really love you, mom." She leaned toward me and said, "I love you so much. I love the way you treat me."

What is happening? I can hardly believe what I am seeing and hearing! It has to be the Hand of God! It must be more than sage oil or Vitamins. It MUST be more!

Historically, I know she can't totally recover, but something is happening and I can't understand. Within a few minutes I asked her if she knew 'who' is coming to see her tomorrow. She looked for an answer so I told her, "Marsha is coming tomorrow. Remember Marsha?" She pondered the question a moment and answered, "I guess I forgot."

Sometime around 4 in the afternoon Loretta was in the wheelchair and each time I walked near she would hold her hand out to me and ask, "Come here." Thinking she may want to be taken to the bathroom I asked, "Do you want to go to the toilet?" "NO," was the quick response, "I want to go with you!"

Put her in a nursing home? Abandon her to someone else's care? NEVER unless it becomes absolutely necessary or I become totally incapable. Lord willing, it will never happen! But, the Lord also has a plan.

25 OCTOBER, 2003 FROM DELEON SPRINGS, FL

Sheri came downstairs and Loretta was sitting in wheelchair beside me. Sheri asked Loretta, "How are you doing?"

Loretta, with a big smile, "I'm here, but I don't know what I'm doing."

Sheri took her to the bath, later informing me that Loretta had "bathed herself."

Sheri's Dad and Mom surprised us with an old fashioned southern style fish fry as a 'going home' dinner. Loretta had real difficulty eating, becoming badly choked. And, as usual, the ruckus made her nervous. She called repeatedly to me, "Don't leave me."

It seems that when asked a question or she wishes to convey a message, she can express herself quite well. Yesterday, after I helped her to the bathroom I turned her back to the bedroom to help her dress. She, thinking we should go to the living area, informed me, " _This is the wrong way!"_

Last evening Marsha was helping her with dinner when she informed Marsha, "I've had enough, thank you." Also, unassisted, she lifted and drank from her glass of tea. Previously she often picked up the glass and emptied it on the table.

Her skin color has returned. Her blue eyes are bright and alert. She seems much stronger and walks very well. And she repeats dozens of times daily, when I'm near, " _Don't leave me."_ She is totally aware of previous conversations and knows we have discussed this very act!

28 OCTOBER, 2003 LEAVING DELEON SPRINGS, FL

May we, by chance, find the 'ring'? Finding it would certainly help pay some bills.

29 OCTOBER, 2003 HOME IN BENTON, KY

I wondered if Loretta would like a simple, old fashioned vegetable soup and was I surprised. She ate, without help, two bowls of soup. But the real surprise came with crackers.

Previously, when anyone attempted to feed her, she often would choke or strangle. However, as we sat eating our soup I placed a few crackers within my reach, which I intended to eat. Surprise. She reached over, picked up a cracker and ate it, without assistance, and never choked or strangled. The second, then the third and the fourth cracker followed by a glass of milk!

I realized I had upset her sometimes at feeding, because I would be outwardly frustrated and noticeably (to her) angry. Other observers were disturbed and criticized, but until one has experienced such unpredictable actions one cannot understand or better manage.

To Caregivers: Don't let others, who have never suffered the same experience, further frustrate you by giving uninformed advice.

31 OCTOBER, 2003

While preparing her for bed, last night, I noticed the special bandage on her bedsore was partially loose and wet. I removed it and found the area underneath very red and inflamed so I left off the bandage, bathed the inflammation with Bacitracin ointment and this morning it was much, much better.

I prepared breakfast (which, incidentally, she seemed to enjoy).

Meanwhile, one of the large glass patio doors, which are partially occupied by one of her 'pet' plants, a 6 foot tall ugly pine-like thing in a very large pot filled with potting soil, caught her attention. Loretta rolled her chair to the door and sat looking out, as I was busy but keeping an eye on her. I noticed her chair had become wedged and she was unable to move so I freed the chair and noticed potting soil on her shirt and hands. Without realizing the truth of the situation I returned to preparing our breakfast and she immediately rolled again to the patio door. I watched as she appeared to be spreading potting soil on the floor.

Since it was time to eat I rolled her to the table now, offered a spoon of food and noticed she _had a mouthful of potting soil._ How much had she swallowed?

I did ask later, "How do you feel today, mom?"

"I have felt better."

Also, was advised by the doctor to restart the Memantine and sage oil extract.

I let Loretta stay at Adult Day Care most of the day. They had a cook-out and reported that Loretta ate all of a medium size cheeseburger.

After retrieving Loretta from Day Care I drove by the doctor's office for flu shots. They weighed Loretta at 111 pounds and told me it's normal for Alzheimer patients to lose weight. (I _n December 2005 she had dropped to about 100)_. She continues to respond, in small ways, to the sage oil extract.

2 NOVEMBER, 2003

I have not looked for 'the ring.' It's just a thing. Loretta is #1 priority. I did find the appraisal, made on February 8, 1980 by M. Manas Jewelers of Paducah. I had forgotten, but its appraised value then was $4,995.00. Another, less valuable ring, which I have found, was appraised at $295.00, I also found her platinum wedding band, with 9 almost invisible diamonds, for which I remember paying $165.00 in 1946. It's the ring I was forced to cut from her swollen finger. But no ring, including 'the' ring, is worth any one of three other things she left me, which we'll see later.)

It's a beautiful sunny day for November. The sunshine is streaming through our windows.

Barbara Reed cared for Loretta yesterday while I did my Saturday program.

Loretta ate a good lunch of chicken, potato salad and green salad which Marsha brought.

I need to note how great it is to be home. You learn how much little things matter when you've done without them for a little while. Things like being able to leave doors open, hot showers, faces of old friends, the courtesies of a small town ( _like the nurse coming to the car to give Loretta her flu shot so I wouldn't need to tug her inside)._ It's nice to live less than 5 minutes from the market, or work, or driving on roads sparse with traffic instead of bumper-to-bumper with unlicensed illegal immigrants who rarely know how to drive. And I _really_ like the changing seasons of west Kentucky.

3 NOVEMBER, 2003

Last night? Rough. Loretta slept very little before midnight. She tossed and turned, talking about nothing, kicking off her covers and hanging her feet off the bed. I repeatedly re-covered and reassured her everything was alright. Once she fought me and scolded, "Don't do that!" "Get out of here whoever you are!" Eventually, since I would be up at 2 a.m. for my program, I removed myself to another bedroom.

This morning she is crosswise on the bed with feet from under the cover, but she's asleep.

4 NOVEMBER, 2003

Loretta slept well last night after a day at Shared Care, the Adult Day Care Center operated by Murray Hospital. The ladies said she ate a big lunch and had a very adequate bowel movement. Perhaps the foregoing explains why she slept better. She is to remain at home today as a healthcare nurse is to reevaluate her for home services.

7 NOVEMBER, 2003

I've left Loretta at the Adult Day Care Center each afternoon, except Tuesday, this week. She hasn't commented, but the sad expression says it all and causes me much grief. However, she seems to have become resigned to her condition and the 'sad' expression prevails most of the time now.

9 NOVEMBER, 2003

She slept quite well last night although I was awakened at 1:30 a.m. by her mumbling, kicking and rearranging the bed covers. I checked her blood sugar at 134. The nurse says that's very good. She became very constipated so this morning's breakfast menu is All Bran, prunes, prune juice and stool softener. It worked!

10 NOVEMBER, 2003

A beautiful day! I returned home from the station and Loretta was in her wheelchair, back to the door. I stood behind her, put my arms around her neck and hugged. Her head quickly turned with those beautiful blue eyes aglow and a beaming smile, as she said, "O-0-0-h, let me hold you!"

Later, after taking her to the Adult Day Care for the afternoon, as I drove away, I painfully remembered how the two of us once enjoyed driving and talking on days like this. We ENJOYED simply being together and chatting about nothing, just chatting. How I miss those days.

12 NOVEMBER, 2003

Last evenings meal was enjoyed by both. I prepared a meal of Garlic-Chicken with bow-tie noodles. She ate very well.

Afterward, I found a cookie, broke in half and asked, "Want a cookie?"

She seemed to not understand, so I raised my voice, stuck the cookie in her face and, again, asked, "WANT A COOKIE?"

She leaned back from my offering and said, "I don't want it."

I, jokingly, asked, "WHAT? YOU DON'T WANT A COOKIE?"

By now, she is obviously somewhat irritated and answered EMPHATICALLY, "I DON'T WANT A COOKIE!"

Finally I got her message.

Incidentally, I continue her on the sage oil extract and I'm convinced it helps. However, the nurse at Day Care informs me they are not allowed to give anything not prescribed by a doctor. So, I continue the dose mornings and evenings only.

13 NOVEMBER, 2003

Loretta still has a mind-of-her-own and likes to have her way at times.

Last evening she did not want to retire! She resisted, threw off the covers and tried repeatedly to get out of bed. After a few minutes of resistance I concluded she would be alright and I retired in the adjoining bedroom. After an hour I checked and found her hanging off the bed with feet on floor and in the process of taking the bed apart.

Without saying a word I rolled her onto the bed and pulled the covers over her. _SHE SLAPPED ME_ and I spanked her behind, through the heavily padded diaper. Of course, the padding prevented any pain, but the pop on the plastic could have been heard next door!

She grabbed the spot I spanked, those blue eyes flashing fire and angrily asked, "WHO ARE YOU?"

I had to laugh. Then I firmly said, "Go to sleep." She never moved again all night. Neither did she slap me again, _that night_.

To Caregivers: The foregoing incident displayed one of her traits I always admired and loved. She could display real spirit and fire. There was never an ounce of cowardice in her.

16 NOVEMBER, 2003

Saturday morning sometime around 2:45 I was awakened by her mumbling. I lay awake and listened for a few minutes until I began to realize this is very unusual and decided I should ascertain if she is out from under cover and cold. I found her half off/half on the bed, rolled her onto the bed, and pulled the covers over her.

I returned to the bed and lay thinking, since she seemed to be getting out of bed could there be something else wrong. So, I checked again and found that she was very, very wet.

I assisted her to the bathroom, changed her into dry underpants, walked her back and sat her on the edge of the bed while I crossed the room to her closet looking for a dry gown.

Now, it's almost heart attack time. As I'm rifling through her closet, her voice, _not from 15 feet, but immediately behind me, asking, "WHAT ARE YOU DOING?"_

She had stood up and walked, unassisted, almost 15 feet, to stand behind me!

I don't remember the last time she walked unassisted!

NOVEMBER THANKSGIVING DAY, 2003

I was up, as usual, and heard Loretta stirring about 4 a.m. I found her sitting on the side of her bed, with a big smile, and soaking wet. I asked, "Want to go the bathroom, mom?" She nodded in the affirmative. I assisted her, then sponged her in warm soapy water and dressed her in dry clothing.

Later, she ate a big breakfast and drank an 8-ounce glass of milk.

And, on this Thanksgiving Day, I'm reminded how thankful I am that a merciful God found a way for me to bring her home from Britthaven (the nursing home).

Days are now quite similar: restless nights, eating well, however constipation is the side effect of Memantine.

7 DECEMBER, 2003

I have arranged our recliners together as closely as possible, so as to be able to hold her hand. And last night she did the unusual. She, in her recliner and I in mine when she, as distinctly and anyone could asked, "Would you sit beside me over there on the couch?"

I said, "Sure would." So, I helped her to the couch.

Then, jokingly, I asked, "Lady, may I sit beside you?"

"Yes, you're welcome to sit beside me."

I was stunned! I looked and she was beaming! I had almost forgotten how her smile lights up a room.

I'm becoming more and more convinced in the sage oil extract!

Sadly however, nothing has helped the limp left hand.

8 DECEMBER, 2003

Loretta was up at 4 a.m.

I helped her to the toilet, bathed her, changed her clothes and walked her to the den and placed her in the wheelchair to await Barbara's arrival. I was reading the morning newspaper when she, in the wheelchair, rolled over directly in front of me and asked, "How are you feeling, this morning?"

Wow! I'm pleased! And I said, "I'm feeling great, mom. How're you feeling?"

"I feel great as long as you're here!" she answered.

What is happening? It's an amazing turn of events!

Later, same day: I am assisting her to the car, there are three steps down from kitchen to garage and, before, I remind her at each step, "one more." This morning I cautioned, "Step down," but before I could say 'one more' she said, "One More." Amazing! SHE REMEMBERED!

I notice, also, on our short drive to Day Care, she sat upright and seemed to observe everything we passed. Not so, previously. _Sage oil extract?_ God is great!

15 DECEMBER, 2003

Heretofore, if one tried to call Loretta's attention to anything, she continued to stare into space without acknowledgement.

Yesterday I called her attention to birds feeding on our back deck. She turned, looking toward the deck, smiled and said, "I see them." This welcomed development has come on so gradually I hardly noticed it was happening.

16 DECEMBER, 2003

Last night, I warmed over a left over pizza and bread sticks. Loretta ate a slice of pizza and when she began to hesitate I asked if she had enough. She answered, "Yes, I've had enough."

I helped her to the living room chair. When in the chair she looked up at me and said, "I want to go with you."

I explained, "I'm not going anywhere. I'm sitting here with you."

"Oh, that's fine." She smiled.

She seems to become a little more expressive each day. Is it the sage oil extract? Is it the Memantine? Is it God? Or is it all three?

Yesterday (Saturday, Dec. 21 2003) I prepared waffles, put some on her plate, cut them into small bites, fed her a bite and returned to the kitchen for mine. Looking back to check on her I had a BIG surprise! _She was feeding herself!_ I mentioned the episode to Barbara when she arrived and she informed me that Loretta had done the same the day before.

Also, last evening, after sitting all afternoon, she turned to me and asked, "What time is it?"

I asked, "Are you sleepy?"

She didn't answer, but smiled, and I assumed she was ready to retire so I helped her change into her gown and to bed. That was Saturday.

This morning (Sunday) I heard her stirring at about 4 a.m. so I checked on her and she asked, "May I get up?"

I assisted her to the toilet and changed her into dry clothes, returned her to the bed and informed her that, "It's Sunday morning, mom, we don't need to get up early."

She questioned, "It is?" and fell asleep.

Amazingly her mind seems to become a little sharper each day.

I believe the sage oil extract must now be taken seriously!

30 DECEMBER, 2003

Loretta responded yesterday in ways amusing/surprising/new. She argued. Once, when helping her to the table, she resisted and said, "I'm going to stay here" (I suspect she thought I was then taking her to Day Care.)

Later, when it was time for bed, I took her hand to lift her from the recliner and said to her, "Time for bed, mom." She again resisted and announced, "I'm not ready, yet!" Then, upon starting down the hall toward the bedroom, she turned to me and said, "I want to go the other way." WOW! _I DO BELIEVE SHE'S ALMOST NORMAL!_

I was awakened sometime around midnight by her excitedly talking and crying. I listened and heard her cry, "Lord, Lord, Lord, Oh God! Oh God! This is awful!"

I suspected she was either off the bed, from under the covers and cold, or wet. I checked and she was none of the above. This was very unusual. She seemed terrified. I couldn't imagine what horrible thing was disturbing her. But, I could imagine anything, and did. _In retrospect, I now can suspect another stroke._

Chapter 17

### 2004 – One day it's encouragement, the next it's total depression!

2 JANUARY, 2004

This hellish monster demon, Alzheimer's (or another stroke?), manipulates one like a yo-yo, up-down-up-down. One day it's encouragement, the next it's total depression. Who can understand?

Yesterday morning, dressed and in the den, she informed me, "I'm cold," so I wrapped another sweater around her shoulders and she said, "That feels good."

At approximately 5:30 p.m. last night, as we were sitting side by side, Loretta turned to me and asked, "Are you about ready for bed?"

"Almost, how about you, mom, are you ready?" I replied.

"Yes, I think I'm about ready."

10 JANUARY 10, 2004

For several days Loretta continues to show more alertness and ability to eat. This morning she was in the wheelchair when she asked me if it would be alright if she stood. I said, "Sure, what do you want to do?"

"I want to go to the living room" so I assisted (only stood near) and she hesitantly walked toward her recliner and sat. Unbelievable!

She also is more able to consume regular foods instead of it being necessary to grind/chop it to smaller pieces. No choking or strangling has been noted in quite some time.

To caregivers: I have been told repeatedly, by those experienced with Alzheimer's, there can be no improvement. So, are the yo-yo symptoms resulting from a stroke instead of from Alzheimer's?

12 JANUARY, 2004

We had finished breakfast, Loretta was in the wheelchair roving about and I was searching the spice rack with my back turned to her. I am totally engrossed in my search when suddenly, and without warning, there's this voice in my ear, and I mean _in my ear,_ asking, "What are you looking for?"

Loretta had lifted herself from the wheelchair in the den and walked several feet to stand directly behind me to determine what I was doing!

I almost bought the farm! I threw my arms around her, started laughing, and exclaimed, "Mom, you scared the hell out of me!" I'm laughing. She began laughing. What a great, great experience!

And, imagine: In the afternoon we were in the living room when I suggested, "Be sure to let me know if you want to go to the toilet"

She said, "O.K. but I don't want to go now."

Nearly an hour later, I was in the kitchen when she rolled the wheelchair to the door and announced, "I think I need to go to the bathroom." She remembered!

I assisted her to the bathroom and she was right. She needed to go!

8 FEBRUARY, 2004

I'm becoming confident that she will return to herself. Not so! I need to enjoy the moment because the gates of hell will reopen.

Loretta continues to show wonderful signs of improvement. She continues to be a little better at voicing her thoughts.

Yesterday, our first born, Marsha, was 57. Marsha was due to visit and, prior to her arrival I told Loretta to remember to wish her daughter a 'Happy Birthday.' I then asked her if she realized her daughter was 57 years old and I asked, "What do you think of that?"

"I think it makes me an old woman!"

( _And, the above only a few months before I'll lose her to a nursing home!)_

This morning (Sunday) she awoke at 5. I was already up and dressed when I heard her stirring. I went to the bedroom, helped her to her feet and walking her toward the bathroom as I asked, "How do you feel this morning?"

"I feel great, except 'that stuff is all over me.'

I knew the 'stuff' to which she referred because I already had caught its odor.

I sat her on the toilet, removed the soiled clothes, bathed her and put on fresh clothes.

She sighed, "Oh that feels better."

29 FEBRUARY, 2004

Remember the doctor at the psychiatric ward who prescribed Zyprexa for Loretta? I'll never forget!

It's now the end of February 2004 and she has been on Zypreza since about the first of June 2003.

It was just announced by Lilly pharmaceuticals that it has been learned that Zyprexa is causing "strokes, in some cases even death"! Now we know what is causing Loretta's strokes! How evil and unfortunate for poor Loretta! I'll have trouble ever trusting chemicals/drugs again! I may also have trouble trusting doctors!

2 MARCH, 2004

I called Cindy Ragsdale of the Alzheimer's support group in Murray. Cindy had not heard a bad word about Zyprexa.

I called the Alzheimer's Association in Louisville. They also had not heard the word on Zyprexa, but suggested the evidence seemed pretty strong since Lilly had notified doctors about its problem. Louisville suggested I talk to the pharmacist about the proper way to gradually release Loretta from this evil drug. I followed the pharmacists' plan.

13 MARCH, 2004

Loretta managed to eat satisfactorily yesterday (Friday) until a light meal at 4 p.m. After some trouble swallowing she began to cough as if her lungs were full of fluid and she sounded as if she were about to strangle. She tried desperately to cough up whatever was choking her with no success.

She coughed and choked for nearly three hours while I was, in panic mode, on the phone. I first called the doctor's office only to receive a message on his answering machine that he would be out of his office for three days. I then called the Murray Hospital, since we were with their Home Health service. I talked to the head nurse at Murray and she strongly advised I have Loretta x-rayed to determine where the fluid was emanating from.

Meanwhile, Loretta's coughing and choking had eased so I elected to wait until morning to take further action.

Next morning she is unable to swallow. I drove Loretta to ER at Marshall County Hospital where she was found to have pneumonia, very high blood sugar and 'something' blocking her throat. She was put on antibiotics and I.V. liquids. Her blood sugar read at 237!

To Caregivers: Highly elevated blood sugar, highly fluctuating glucose readings and blood pressure are acknowledged side effects of Zyprexa! Not to mention stroke and death!

**10 APRIL 10, 2004 (** _Three days before our 58_ th _Anniversary)_

The ER doctor caught me in the hall. "Mr. Barnett, I hate to tell you, but you have only two choices."

I wilted.

He continued, "Loretta has pneumonia as a result of aspiration."

I wondered, "What does this mean?" and he continued, "She will not get better. You may make either of two decisions, either let nature take control or install a feeding tube."

"A feeding tube?" I asked, "What is the other choice?"

"She will slowly die a painless death. She will not suffer." He then further crushed me when he said, "If you authorize a feeding tube I hope she returns and haunts you!"

I prayed. I cried. Lord what kind of a choice is this?

She helped me decide. I sat by her bedside as she leaned over, put her head on my shoulder and said, "I love you."

I approved the 'tube.' How could I do otherwise? For as long as there is breath there is hope. Furthermore, what about me? How could I survive without her?

And I continue thinking it wasn't long ago that I assumed our love and our life would continue forever! Also, don't forget the promise I made a few years ago: "If you leave before I do, I'll be in your footprints before they cool off, so don't run too fast." She laughed and said, "That's the sweetest thing you've ever said to me."

My Loretta is in a 'Nursing Home.' Oh, they don't call it a 'Nursing Home' but it is.

She is now in Long Term Care/Skilled nursing, room 209 at Marshall County Hospital, where she is to spend the balance of her life.

I made arrangements for side-by-side vaults in the mausoleum at Marshall County Memory Gardens. The vaults are on the East side overlooking a beautiful pool surrounded by willows. I think Loretta will like it and, soon, I will be beside her.

11 APRIL, 2004

I was with her twice today. At about 9, this morning, I took her to the Sunroom where we watched birds and squirrels frolic beneath the Bradford Pear tree until 11:30. I left her at the nurse's station and she watched my every step until I was through the exit door.

I returned to her at 1:30 to find Tony and Shirley Edwards (longtime friends) at her side. We chatted until 3, with Loretta silently observing and listening without saying anything. When Shirley stood to leave she took Loretta's hand and said, "I love you, Loretta." Loretta smiled and said, "I love you, too."

Then Tony said to her, "I love you," and Loretta's answer to him was, "That's nice."

Tony laughed and then to her, "You sure look nice." Loretta then, "Well, thank you."

For over two hour. not a word from her, then the foregoing exchange!

16 APRIL, 2004

How I pray that I can forget the guilt of April 27, 2002. Had I not pulled my hand away from hers – held on until she was safely in our house instead of wandering to the neighbor's front porch only to break her leg, perhaps maybe things would be better.

So, here she is. Being fed through a tube, can hardly speak as a result of a stroke(s) and nothing to do but stare blankly at a wall or at the ceiling. Face reality! Our lives are nearly finished.

18 APRIL, 2004

I visited her at noon today and what I saw almost broke my heart. All 'inmates,' except Loretta had been taken to the dining area for lunch. Loretta sat alone in the hall, I'm sure wondering why she was left behind.

I previously mentioned the Sunroom at the buildings south end. But, equally nice is the screened gazebo. Loretta and I found it to be very nicely equipped with an outdoor type love-seat. We enjoyed sitting and swinging for more than 3 hours. I watch her facial expressions, when talking to her, and I'm positive she understands all I say. Occasionally, she answers. So I talk, sometimes to closed eyes, but I know she's listening.

To Caregivers: Talk to them, talk as if you're expecting an answer. Sometime they surprise you and it keeps them from feeling alone.

22 APRIL, 2004

Loretta's sister in Durant, Miss died today. Mattie had (I think) been in a nursing home for about 10 years with Alzheimer's/Parkinson's and died of pneumonia.

I haven't mentioned that I continued to employ Barbara to sit and keep Loretta from being lonely when I'm not with her.

Today, when I visited at 10:30, Barbara with a bunch of kids was with Loretta. Loretta was beaming! I returned at 12:15, Barbara went home and I sat with Loretta on the sun porch until she 'seemed' to be sleepy, so I rolled her into the room, near her bed, and she announced, "Not now."

So, it's back to the sun room.

At 2:30 she was falling asleep in the chair so, back to her room, in bed, I leaned over and told her I was leaving. She smiled and said, "O.K."

I know she is to become miserable, but as long as she can experience even a small bit of pleasure and occasionally smile, I have to think I could not have lived with myself had I let her die of starvation.

25 APRIL, 2004

I sat with Loretta in the sun room, holding hands, until 11:30, then returned at 1 p.m. to discover she was asleep.

To Caregivers: I remembered the remark by the doctor that I was not doing Loretta a favor by trying to keep her home, instead of putting her in the hands of skilled people. When I compare today's situation to that of 3-4 years ago I realize that she is much more at ease now. I remember how she cried herself asleep saying, "Oh God, what's happening to me?" and how frustrated I was because I couldn't answer or help her.

I returned to her at 3 and she was yet in bed, but stirring. I sat down beside her for a few minutes but she didn't seem to notice I was present. I began to wonder _WHY_ I was here. There seems to be enough efficient people to care for her needs, so WHY am I here? Am I here to help her or perhaps to help ME! It's so very lonely at home alone, but it's also lonely here! At home I wander from room to room, somehow expecting to find her in her favorite chair or in the kitchen... or _somewhere,_ but, no, just loneliness. So, I drive again to the hospital and sit.

Fortunately the hospital is less than 3 miles from our home. I understand some are forced to place their loved ones in homes, even in faraway states. How lucky I am.

30 APRIL, 2004

I learned it's permissible to take Loretta out. It was a very nice day so we did it. I assisted Loretta and she walked to the car. We drove to Lighthouse Landing (our daughter Brenda's and husband Marty's Marina). Loretta seemed to thoroughly enjoy the visit. She gave her daughter a big smile and "Hi." We then drove to water's edge where she joined me in watching the waves, the blue herons and the seagulls.

When we returned to the hospital she turned to me and said, "Let's go, again." I assured her we would again tomorrow.

I'm thinking 'why not keep her at home? I can feed her every 4 hours and pay Barbara to sit when I'm absent. Why not?"

I even rearranged the spare bedroom, checked on renting/buying a hospital bed and made preparations to keep her home. Something continually hampered those endeavors.

1 MAY, 2004

Our daughter, Marsha, visited Loretta until 3 p.m. and I was with her from 10-5. So, Loretta had a busy day. She made it very painful when I prepared to leave at 5. I hear the heartbreaking phrase I'm to hear often in the coming days, "Please don't leave me." I promised I would be back, and tomorrow we'd drive to Marsha's in Tennessee and see her new dog. "Would you like that?" She nodded 'yes,'but as I left, she watched every step until I exited at the halls end.

The days of May and early June were quite ordinary. Barbara stayed with her during the hours I could not. I took her for drives on nice days and sat with her when the weather did not cooperate. There were no notable changes.

19 JUNE, 2004

Where has time gone? Now a noticeable change; the liquid formula has caused diarrhea so badly the doctor authorized an opiate to settle her stomach. It worked so well she sleeps constantly.

I now bring her home afternoons after her noon feeding. She walks (with assistance) to the car, into our house, to her big chair, sits and immediately falls asleep.

I can't be sure now that she recognizes me. She stared at me this afternoon as though she was uncertain.

22 JUNE, 2004

I was surprised at her alertness compared to yesterday's condition. The charge nurse informed me the opiate had been stopped.

She now weighs only about 100 pounds. Today, after driving to Calvert City I brought her home, walked her in and sat her in the chair before noticing her pants were around her ankles. I must find something smaller.

23 JUNE, 2004

She was more alert today. When I walked into her room she beamed from ear-to-ear, held out her hand and called, "Ooooooh, David!" Of course I was happy even though I have not changed my name to David.

After the 11 o'clock feeding I brought her home until 4:30. She was not happy about returning, hanging on to me and saying, "I want to stay with you."

Our daughter Marsha placed a recent portrait of the two of us made in happier times on the wall near her bed, and one of the nurses told me Loretta waves at the picture often.

It was difficult leaving her tonight!

25 JUNE, 2004

Loretta returned to some normalcy today. Since being taken off the opiate she is bright-eyed and very talkative. Today, in the wheelchair, she seemed to want to move in a direction which Barbara, the sitter, was prohibiting. Loretta looked at Barbara, with eyes flashing fire, and demanded, " _Leave me alone!"_

It was wonderful to see the old Loretta break out again!

I helped walk her to the car, staying home and in her favorite chair until 4:30. Tonight she did not object returning.

27 JUNE, 2004

I found her seemingly asleep in her wheelchair this morning when I arrived at 8. I stood near her chair wondering if I should disturb her or not, when an aide walked past. I asked the aide if Loretta had been fed, as I would like to take her home.

At the sound of my voice those blue eyes flashed open, she grabbed my arm and her face lit up like a sunrise.

She had been fed so I walked her to the car, drove to Grand Rivers, where we visited our daughter a few minutes, then to the lakeshore for about 2 hours and home until 1 p.m. At 1 o'clock I aroused her from half-asleep and told her, "It's time to go."

"Oh, No," she exclaimed, and appeared to want to cry.

2 JULY, 2004

Today, after the daughters had left, Loretta tugged at my shirt and pleaded, "Please. Pleas.e.

I asked, "What, mom" She couldn't put words together for a minute, then again, "Please. Please."

"Please what, Hon, what do you want?"

This time the words came, "I just want to hold you."

I helped her to the couch, sat beside her and she snuggled against me, put her head on my shoulder and I asked, "Is this what you want, mom?"

"Uh-huh," and she was content.

I returned her to Long Term Care at 5, walked her in, sat her in the wheelchair, kissed her and turned to leave. She grabbed my hand, almost in tears, and pleaded, " _I want to stay with you."_ I tried to console her by assuring her I would be back soon. She repeated, _"I want to stay with you."_

A nurse was standing near and I asked if she heard. The nurse was in tears and said, "I heard."

Days, weeks and months continue to be similar. Either Barbara (the sitter) or I am with her every day. I take her for drives, sit at home and hold her hand or, in some way, try to vary her routine as much as possible.

Chapter 18

### 2005 The 'Long Goodbye' comes to an end or does it?

9 JANUARY, 2005

Loretta now weighs 90 pounds. She is unable to control her bowels. Rarely is she able to say anything lucidly. They now feed her six times daily in an attempt to stabilize her weight.

I pay a sitter now Monday through Friday from 8 a.m. until 4:30 and one to sit Sundays. I keep her home Saturdays.

Returning her is the hardest thing I've ever done. She pleads and resists when it's time to return. She says repeatedly, "I want to stay with you," or "I want to stay at this place," or "I don't want to go back to that place." These utterances she is able to enunciate very clearly and continues so until the end.

27 JANUARY, 2005

The weather has prevented me from bringing her out, but sitters are with her and I'm in several times daily. She sleeps much of the time, but when awake, the sitter rolls her around the hospital corridors for some change of scenery.

I received via internet the following 'anonymous' poem.

An Old Lady's Poem

What do you see, nurses, what do you see?

What are you thinking when you're looking at me?

A crabby old woman, not very wise,

Uncertain of habit, with faraway eyes

Who dribbles her food and makes no reply

When you say in a loud voice, "I do wish you'd try!"

Who seems not to notice the things that you do

And forever is losing a stocking or shoe

Who, resisting or not, lets you do as you will

With bathing and feeding, the long day to fill.

Is that what you're thinking?

Is that what you see?

Then open your eyes, nurse, you're not looking at me.

I'll tell you who I am as I sit here so still,

As I do at your bidding, as I eat at your will.

I'm a small child of ten... with a father and mother

Brothers and sisters, who love one another.

A young girl of sixteen, with wings on her feet

Dreaming that soon now a lover she'll meet

A bride soon at twenty – my heart gives a leap

Remembering the vows that I promised to keep

At twenty-five now, I have young of my own,

Who need me to guide and a secure happy home

A woman of thirty, my young now grown fast,

Bound to each other with ties that should last

At forty, my young sons have grown and are gone,

But my man's beside me to see I don't mourn

At fifty once more, babies play round my knee

Again we know children, my loved one and me

Dark days are upon me, my husband is dead,

I look at the future, I shudder with dread

For my young are all rearing young of their own,

And I think of the years and the Love I have known

I'm now an old woman... and nature is cruel,

"Tis jest to make old age look like a fool"

The body, it crumbles, grace and vigor depart,

There is now a stone where I once had a heart

But inside this old carcass a young girl still dwells,

And now and again, my battered heart swells

I remember the joys, I remember the pain,

And I'm loving and living life over again

I think of the years... all too few, gone too fast

And accept the stark fact that nothing can last

So, open your eyes, people, open and see

Not a crabby old woman; Look closer, see ME!

–Author-unknown

I read the poem and was permitted to post it on the door of Loretta's Room for all to see.

More importantly, however, it caused me to _SEE_ the smiling, laughing, happy girl still inside that crumbling shell. I could easily remember her happy times and to treat her differently.

I think she was aware of the difference!

19 FEBRUARY, 2005

Something is going on in her head other than 'loss of memory.' She has begun to rub her forehead constantly on anything and everything within reach and continues to do so until all hair is gone in front.

I asked the doctor about getting an MRI. He approved and we made an appointment at Regional Medical Center in Draffenville. They failed because, as they explained, her blood pressure was too low to safely administer a knock-out drug which is to keep her immobilized.

She is very nervous and prattles constantly. I brought her home at 10 a.m. today but had to return to the nursing home at 2.

I pray God will soon take over and do what is best for her. It's killing me. I hope I never, never have to do anything as difficult as leaving her sitting in the hall and begging me, "Come back, come back."

2 MARCH, 2005

There're many more, but this made my heart stop for a moment.

First, I dreamed last night Loretta and I had planted a beautiful tree and someone had cut it to the ground. Now, Loretta and I are in a truck looking for a replacement when I awoke. Then, the same morning I'm up at 5 a.m. running warm water with which to shave when Loretta is standing beside me. I wheeled to look and she was gone!

3 MARCH, 3005

Loretta has developed an extreme hostility toward anyone attempting to brush her teeth. She will bite! Then, in addition, the nurse, this morning, attempted to siphon sinus drainage from her nose. She fought like a tigress. Next, two aides delivered her to the toilet and _pulled down her pants. That did it!_

She sent one to the emergency when she bit her on the upper arm and tried to bite the other! I think body armor was ordered.

Loretta soon will be here a year. Sitters are with her days. I dash by several times a day, hug and kiss her and sit when she's awake.

14 MARCH, 2005

Her helpless left hand, clinched into a fist, and arm are drawn tightly against her waist. The nurses have provided a padded gadget for Loretta to grip, to prevent the nails from cutting into the palm.

She sleeps more now.

The charge nurse informed me that Loretta had become inflamed when aides tried to brush her teeth and told them, in no uncertain terms, that her husband "would be here any minute and he'll be very mad!"

11 APRIL, 2005

I visited her at 9 a.m. and found her sitting nude in her room, turning blue with cold! (Loretta had removed her blouse.) I informed the charge nurse, she hurried in, redressed Loretta and Loretta said, "Ah that feels wonderful!"

She's now 94 pounds, up from 90, but seems to be getting weaker and continues to sleep much of the time.

18 APRIL, 2005

I noted the grass needed attention and a memory which I shall never forget overwhelmed me.

For years I had resisted acquiring a riding mower, but in 1999 I finally gave in and bought a used rider. The first time I used it I had made a turn or two and noticed Loretta watching, as a little kid would watch another with a new toy. I stopped near and asked, "Hey, would you like to take it a round or two?"

Her face lit up like a sunrise, those blue eyes sparkling and with a smile, she beamed, "Sure!"

I helped her get aboard, showed her the controls and off she went. She did figure 8's, Z's, X's, the most unimaginable mess, all the while, laughing with joy.

That's the last time I remember hearing her laugh! Lord I miss it! To hear her laugh again would be the most profound blessing I could imagine!

Is it the end of her story? No, there's mystically more!

9 DECEMBER, 2005

It's a Friday. It's 4:15 a.m. and I'm preparing to leave home for the radio station when my telephone rang. The voice informed me Loretta "had a very rough night, had a skin tear on her arm, was very restless, was vomiting and had _severe lung congestion,"_ but they were working to clear her lungs.

I sat down with head in hands and prayed. My prayer was simple; " _PLEASE LORD BE MERCIFUL."_

Thirty minutes later the nurse called again to say " _Loretta passed away."_

My love of almost 60 years left this morning! I know she is relieved of her misery, but mine continues. The word 'lonely' does not begin to describe my feeling. It's over! How can life be worth living now!

I called the station that I would not be coming in today, then drove to the hospital, walked into her room to see what I wish I had never seen: a face in absolute agony! The Death Certificate, later, explained more than I wanted to know.

It read _upper respiratory failure as a consequence of aspiration._ It meant Loretta had _drowned on her own vomit!_

Before concluding Loretta's story and her seemingly paranormal activities which followed her leaving, you the reader/caregiver will, no doubt, appreciate something that completely changed the way I looked at Loretta and, in fact, all the unfortunate elderly.

Chapter 19

### I believe Loretta is still very near!

I believe Loretta is still very near!

In addition to the aforementioned events: seeing her standing beside me, while I shave, even though she was not there and the strange opening/closing of a door (which can be reasonably explained) there are other events which cannot be attributed to imagination or normal.

Finding lights turned on, which I was certain I had turned off, can be assumed to have been accredited to my 'forgetfulness.'

But why would the house's security system begin screaming in the middle of the night convincing me someone or something was moving in my house? Not once, but twice?

Can it be that Loretta had an ability to mysteriously know my thoughts. First, the security system, since installation in 2002, has never before malfunctioned. Second, since my ability to hear has lately deteriorated, I have wondered if the system made a sound adequate to awaken me if someone entered. This has been a big part of my thoughts so _did she test it for me?_ _TWICE!_

Of course we will agree there was a mechanical malfunction, right? Why then, and why in such a terrifying way?

The way my heart was pounding while looking for an intruder I could have easily joined Loretta!

I now regret, to a small degree, that I never was real big on special occasion cards or flowers. I was big on a 'hug and a kiss' and it didn't cost anything. Now I'm not sure!

6 JANUARY 2006

On Thursday January 26 (Loretta had passed on December 9) I opened a book for no particular reason. I wasn't interested in the book. I simply reached, unconsciously, and opened it. _A GREETING CARD FELL OUT!_ It was a Father's Day Card signed by Loretta, proclaiming me a KING for that one day, but reminding me that after that day she goes back to being QUEEN!

On January 30 I opened a drawer in the china cabinet. Why? Who can answer? There's nothing in a drawer full of napkins, plate mats and old silverware in which I'm interested! There, a card _TO MY HUSBAND on our 50_ th _Wedding Anniversary._

It read: remember when we promised to love each other forever? We had no idea what we would encounter in the future, what difficulties or joys life would send our way. There have been wonderful times when our love was the most beautiful thing in the world... and there were difficult times when our love was the only thing that saw us through.

I'm glad we've kept that promise we made – because I never could have known this kind of happiness without you.

(Signed) Love you, Mom – _JUST WAIT 'TILL THE 100TH!_

Our granddaughter, Sara, was 16 on Friday January 27, 2006. The following Monday I unconsciously picked up a lavender envelope, opened it, and _inside was a birthday card addressed to Sara, with a HANDWRITTEN NOTE of apology for "BEING LATE, BUT I LOVE YOU AND I HOPE YOU HAD A HAPPY BIRTHDAY. I LOVE YOU. There was also in the card an undated check for $20 to Sara in Loretta's writing. (_ The check's serial number indicated it had been written in the 1990's.) WAS IT? _(I later determined it was written in January, 2000 – one year after being diagnosed with Alzheimer's._

More absolute truth, not fabricated or imagined!

14 FEBRUARY 2006

On Valentine's Day, February 14, 2006: I discovered a bag of photographs and found several recently made pix of Loretta. I thought, since nothing else seemed to interest me today, I would pick out some favorites to frame and display on my office wall.

I sorted through them, picking several of her happy, smiling face and, since I did not have a suitable frame yet, I placed the stack of pictures on the top shelf of a bookcase.

An hour or so later I again picked up the pictures. There on the bottom of the pile was an envelope. (If swearing were nice I could swear the envelope was NOT there when I deposited the pictures.) HOWEVER, THERE IT WAS!

Remember, this is Valentine's Day!

I opened the envelope and read the following:

For all the loving things you do

For all the dreams you've made come true

For sharing life, for being you

I love you more than ever.

HAPPY VALENTINE'S DAY

(Signed) Love you, Mommie

The signature was written AFTER her illness began, not years ago. Incidentally, I often called her 'Mom' or 'Mommie.'

After discovering her notes of love my guilt was mounting because I didn't remember ever giving her a Valentine's Day Card.

But, guess again: later the same day, I was looking for a picture album or any method of preserving the photographs I had chosen. I found an old empty album stored in the coffee table. I opened the 'empty' album and falling out was a Valentine's Day Card _I HAD GIVEN HER! When? Forever ago and she had saved it for this precise moment!_

How incredible! But then Loretta was, or is an incredible woman!

Once upon a time, I don't remember when, but in a moment of loneliness or boredom, she elected to be an artist, a painter of pictures. I have found a huge selection of brushes, paint, etc. but only one painting. Hidden in a drawer under many other things is the painting of a very sad clown.

I study the sad clown and wonder. Why did she hide her painting? Was she trying to hide sadness? Did she see something of the future in that painting she didn't want to face? Did she see a sign of things to come? Or was she simply dissatisfied with the finished work?

I do know there is such desperate sadness in his face it makes an observer want to cry also. I study the picture and wonder why I see Alzheimer's in that sad face. It expresses exactly the mental picture I have of Alzheimer's hell.

I know the work is hers because the tools and paints were with the clown. Was she unhappy with her work or was she attempting to put 'sadness' away?

Is there possibly anything more? We shall see. We shall see.

Perhaps someday I'll find her ring!

Chapter 20

### The dream

30 OCTOBER 2007

Loretta was forty-ish. Her beauty took my breath away with her hair drawn in a backward sweep exposing delicate ears laden with her favorite earrings and dressed in her full length mohair coat and blue-trimmed-in-white butterfly western style boots.

I stood in surprise as she walked to the entrance door because I had not known she was leaving. I asked, "What's up, mom?"

"It's bowling night. I'll see you later."

"Bowling? Dressed like that?" No answer. She left me standing with the unanswered question still plastered on my face. She's gone.

Minutes passed as I remained frozen in place. One minute – two – three?

I was still standing and wondering, trying to understand, when the door opened and she returned. I asked "What? No bowling?"

"I called and arranged for a sub. I decided I'd rather be with you," as she came and embraced me.

I had never felt more pleased. A joyful moment. Then, just as suddenly, she disappeared and I am nervously looking for her when I saw her in our garden gathering grapes. Without a moment lost, I'm at her side also gathering grapes, when I reached for a low hanging cluster to discover a coiled rattlesnake.

Then I awoke. It was a dream. But, as I compose these words, the memory of her visit though only a dream, brings tears to my eyes and a lump in my throat. For a few seconds she was real! She was alive!

The Dream seemed to be pure symbolism: She was interred in those special boots, which she loved. The rattle snake symbolized Alzheimers. Her exit and sudden return told me she would return in spirit.

Now, October 30, 2007, almost two years since I lost her, I'm again awake and alone. How long, Lord, does the hurt continue?

Epilogue

### 2008 – Three Years Later – The Ring

After trying for three years to escape reality simply driving the highways and finding myself in Florida at Geoffs' – painting his house – nothing seemed to blot out the memories so I returned to Benton in 2008 determined to sell the home 'we' had enjoyed so many years. And the one thought that haunted my mind mostly was locating 'the ring'.

I dug through every drawer and every possible hiding place she might have hidden it. Finally I accepted it as a lost cause and began to remodel and prepare the house for sale.

First I called an auctioneer to remove and sell everything not nailed down. Then it occurred to me to dig out all 'my' personals. I had some antique guns hidden in a secret false ceiling over a linen closet in the hall. (The ceiling is 8 feet and impossible for the average person to reach).

I removed the ceiling, reached and retrieved the guns and accidentally came in contact with a plastic zip lock bag. When removed I found it contained several pieces of Loretta's favorite pieces of jewelry including the diamond solitaire.

Who put it there? And more mysteriously WHEN! I alone knew of the false ceiling. I needed a kitchen stool to reach it. To my knowledge Loretta was not aware the place was there!

After all other mystical events; the burglar alarm, the computer room door silently opening and closing leading me to think someone was in the hall watching, etc. etc. I had to believe her spirit was still with me. But WHY and WHEN did she hide her jewelry in a place she didn't even know existed? – Harl Barnett

#

Although Harl has no answers, only questions I have come to believe from his chronicles that the honey-blonde haired girl with wings on her feet and fire in her sky-blue eyes the love of his life, his best friend and soul mate is still very near and is simply awaiting his arrival. – L. Darryl Armstrong – May 2017

Harl and Loretta Barnett

Mr. Barnett can be contacted at

**Harl Barnett** harlbarnett@gmail.com

I am sure he would enjoy your feedback.

