The Other Side of Alzheimer's

BALBOA PRESS

Contents

IN MEMORY OF.................................................................................................................................iiiDEDICATIONS..................................................................................................................................ivSPECIAL THANKS...............................................................................................................................vLETTER FROM THE AUTHOR.......................................................................................................................viii1. Journey Into Alzheimer's Reactions before and after the diagnosis........................................................................12. Puzzling Pieces The confusion of learning how to live when your spouse has Alzheimer's...................................................113. Marriage: Memories That Matter Issues of marriage that affect you in dealing with Alzheimer's............................................234. Driving The Decision When to stop your spouse from driving...............................................................................395. Reflections How you feel about yourself as you change while living with Alzheimer's......................................................536. Day Care Daze What adult day care really means to both of you............................................................................657. Lost and Found: the Darkness and the Light The loneliness of not being recognized and the joy of a remembered moment.....................778. Judge Without A Jury Feelings when your spouse goes through paranoia with Alzheimer's....................................................879. Ready For The Holidays What to expect, or not, for holiday time..........................................................................10310. Thank Goodness It's Monday The difficulties of weekends without the regular work week schedule..........................................11311. When The Time Comes The heartache of facility placement.................................................................................12912. Michael's place Visiting after placement................................................................................................14513. And The Birds Sang Peace at the end.....................................................................................................15914. A Trip Of Discovery Reconnecting with life after Alzheimer's............................................................................181

Chapter One

Journey into Alzheimer's

* * *

As I approached the driveway of our home after work one afternoon, I was surprised to see my husband Michael's car already there, which was unusual. I walked in and saw him sitting in his wingback chair watching television. He said he felt fine, in answer to my question about his coming home early. I turned left, continuing on through the dining room, and was shocked to see the window broken. Glass was all over the floor.

"Michael!" Did you see this broken window?" I exclaimed, immediately thinking our house had been broken into.

"Yes. I broke it," he said, without getting out of his chair.

"What happened?" I asked, completely at a loss.

"I lost my house keys and had to get in somehow," was his almost off-hand reply, as though that should have been obvious to me. I stood there in stunned silence, not making sense of anything. My mind replayed coming through the front door and there had been nothing said about lost keys, not to mention a broken window. There had been no attempt to clean up the shards of glass or to tape something over the gaping window. To say that I thought this extremely strange is to put it mildly. It frightened me, to be honest. I asked again if he felt alright, thinking something must be very, very wrong. As I reflect back on it, something was, indeed, very wrong, but I just didn't know what it was. I asked him to help me clean up and tape over the window, which he was perfectly willing to do. I called someone to come and replace the glass and our evening went on as though nothing out of the ordinary had happened. At least, that's the way Michael's evening went. Mine was filled with feelings of discomfort, disbelief and distress.

Michael and I had experienced at least three years, probably more, of noticing his memory becoming increasingly worse, and now it seemed unlikely that it was just a normal process of aging forgetfulness. He was more than twenty years my senior and in his seventies, had a Ph.D. degree and owned a small engineering and manufacturing company. He was a gentleman, a well-rounded intellectual, and he had the best sense of humor I had ever encountered. He was fun, and he was my best friend.

The broken window incident was followed not long after by two more inexplicable events. We were at the breakfast table one morning when he picked up a familiar box-shaped case with a simple snap closure containing an item he wanted. He began banging it on the side of the table, saying in frustration, "There must be a way to get into this damn thing!" I felt a frisson of fear race through me. How could he not know how to open it? Couldn't he see the snap on the flap?

The final occurrence which confirmed in my mind that we needed advice happened after dinner one evening. He was clearing away the dishes, which he did every bit as often as I did, and asked for directions for opening the dishwasher. Opening the dishwasher? Thinking I must not have heard him correctly, but looking at the closed but not locked dishwasher, I was tentative in opening it for him which would surely cause him to be embarrassed. I expected him to say with some exasperation, "Oh, yes, now I remember. Of course," but neither embarrassment nor exasperation happened. He thanked me for showing him how it opened, and the now familiar lump of fear lodged in my throat. Sleep eluded me that night. His forgetfulness had reached a state that I considered urgent, while he acted as if there were nothing strange at all about these incidents.

We agreed in the next few days that I would accompany Michael to see our internist physician, Dr. Smith, for his regular appointment the next week and talk about the memory problems. The physical examination went routinely well, and at the end Dr. Smith asked Michael if he had any questions.

"Doc, I can't remember a damn thing. Can you give me something to cure that?" Standing off to one side, I nodded emphatically at Michael's words. Dr. Smith asked us to explain, and Michael talked honestly about losing things and forgetting things.

I added my input: "Sometimes he forgets how things work. Once he couldn't remember how to open a snap closure on a box, or how to open the dishwasher."

Michael laughed a little and said, "See? I don't even remember those things!"

Dr. Smith smiled, started writing on his pad, and said, "I have a friend, a neurologist, who knows much more about this than I do. He specializes in memory problems, and I want you to see him. Here's his name and address."

As we sat in the neurologist's examination room two weeks later for Michael's appointment with Dr. Andrews, I picked up a copy of Reader's Digest and began reading aloud all the humorous excerpts I could find to alleviate our nervous anxiety. We laughed so much that I was concerned about disturbing people in other rooms. Dr. Andrews entered to find us smiling and chatting, and must have wondered if the reason we were there were serious at all.

After discussing our concerns with us, Dr. Andrews and his nurse put Michael through some simple motor movement exercises, asked him to repeat a few things in correct order, and to copy some geometric shapes with paper and pen. It seemed to me a straightforward basic glimpse at the way Michael processed information and directions. We left that appointment with recommendations for getting an MRI and a psycho-social evaluation, and instructions to return later for a consultation about the results. After these were scheduled and done over the next interminable weeks, we went back to Dr. Andrews for the final diagnosis. It was Alzheimer's-type dementia. I watched my husband's face crumple for a mere second or two as I myself struggled to breathe, and then Michael straightened his back and we walked out. He assured me all the way to the car that I needn't worry, because he wasn't about to let this thing beat him. I smiled weakly but was utterly terrified, my heart pounding and my thoughts not even coherent. Forty-five minutes had started to make a huge difference in our lives. I didn't know at the time just how life-changing this diagnosis would become, but my instincts were instantly in dread mode.

For the next two weeks or so, as I watched for Michael to come home from his office at the end of the day, it was as though I were expecting a stranger to walk through the door. Someone with a label across him like a banner, proclaiming his new identity as a person with Alzheimer's disease. Of course he was the same person who had walked out that door in the morning, which had the odd effect of being comforting and confusing at the same time.

I began to doubt that I had heard the doctor correctly. I tried to persuade myself that what I had really heard was that it was not Alzheimer's. I was going through my days in such a state of confusion that it was exhausting. I finally decided that I had to talk to the neurologist again, this time alone, and made the appointment. It was as the date approached that I had my first rational thought, realizing that I needed to have someone with me who would hear what I would hear, good or bad. I asked a nurse friend to accompany me, and we both heard the same thing: it was the bad news.

Michael and I were, without a chance of reversing course, on our journey into Alzheimer's, which is confusing, unrelenting, continuing sometimes slowly but steadily nonetheless. The course it follows is never clearly mapped with directions or signposts announcing where you are or how much farther you have to go. The road begins with unexpected curves and declines, then suddenly seems to go straight uphill into unknown territory. It forces a struggle to find your footing and enough stamina to search for some kind of level ground. Sometime later you feel that you are spiraling downhill too fast, with no time to catch your breath or to grab onto something that will steady you and slow the pace. It is a journey that relentlessly unfolds before you, out of your control. It is tacked onto years of countless sets of lost office and house and car keys, forgotten appointments both social and business, struggles with finding words in conversation, and oddly strange behaviors.

Ours was a journey of steep hills and shallow valleys, paths that wound up as blind alleys, bleak days and black nights. There were roads dimly lit at first, which would eventually, sometimes, become illuminated with understanding and acceptance. There were stops along the way in places of fear and heartbreak, grief, loneliness and loss; but there were also places of rare moments to savor and of touching love. It took seven more years to complete; more than ten years in all to reach the final destination, the journey finished.

It took another two years for me to realize that love is far more enduring than any disease; which, in the end, brought me to a peaceful place in my heart. I finally reached that level ground that had eluded us for so long. It was not the same place from which we started, but then it could not be. There had been too many twists and turns, too many challenges to climb over and too much time to traverse the distance.

The other side of Alzheimer's is yours, and it creates something within you that you could not have anticipated in different circumstances. It can strengthen or weaken, awaken commitment and love or despair and illness. With support and knowledge, you can find that your own journey is a revelation through which you discover a deeper understanding of life's challenges and blessings.

Surviving living with Alzheimer's is indeed possible, and your journey can end in peace. Give it time. It is love that matters; the love that was there at the beginning of your marriage. Go back to it, take the time to feel it and hold on to it. It may be difficult, shadowed as it is for much of the time, but it is there. It is love that brings the grace of peace. It is love that enables you to survive living with Alzheimer's.

Chapter Two

Puzzling Pieces

* * *

Life is a puzzle: a dynamic and fluid force, often requiring us to alter the expectations we have of the way things should be. We envision a picture and fit the pieces together to complete it, even when they have to be re-shaped and replaced. Most of the time we manage to keep the image of the picture relatively intact. But nothing is more confusing than picking your way through the pieces of life created by your spouse having Alzheimer's disease. You are looking at the pieces of a new jigsaw puzzle spread everywhere around you, with every day a new puzzle.

When you live with Alzheimer's, there is no pretty picture on a box to show you how it should look or how to begin putting the pieces together. Some days have very little shape, no pleasing colors and pieces with sharp edges that actually hurt to touch. Some pieces are quite large, making them difficult to grasp, while others are small but critical to the picture. It is just human nature to try to create order when chaos enters your life, which is why we try to put the pieces of the Alzheimer's puzzle together. Searching for something that makes sense, that we can recognize, is a way of coping with things when our lives have, indeed, become scattered bits and pieces of a once-whole picture.

Many people have this puzzle and no two are exactly alike. How to begin making things fit together is an elusive, frustrating, lonely and exhausting process. Even if there were a set of directions, one set would not necessarily fit a different puzzle. There are, however, similarities in our responses to the challenges, many which mirror those of others'. There are some of the same things to learn, even as we work on the variations that are our own Alzheimer's puzzle.

Denial is the characteristic of major pieces, but they are still difficult to identify and link. Many times they get left in the scattered pile and never become part of the whole. My own experience with denial went on for a long time and exacted a painful price of frustration. I had no idea that acceptance of the stages of Alzheimer's, rather than denying them, would make working with them easier. It took being part of a support group of people who were also living with Alzheimer's to show me the truth and wisdom about that.

The pieces of fear are fairly outstanding. Fear creeps in when you finally realize that all your attempts to explain and correct behaviors are totally unsuccessful, which was certainly true in our case and in many others, I learned. Watching the same forgetfulness and mistakes after a while prompted me to give reminders often.

"Do you have your house keys?" "Do you need to put gas in your car?" "Remember that we have to be at the birthday dinner tonight by 7:00."

By far the most common tactic at this stage is to leave notes, mostly taping them to the front or back door. My favorite place was taping them to the dashboard of Michael's car. The notes would end up in his pocket or crumpled underfoot on the car floor, forgotten and unheeded. He still would forget the thing the note had been about. The reminders, verbal or written, inevitably become increasingly ineffective. Pieces of the Alzheimer's puzzle are everywhere you are.

One thing that seems to be common in many Alzheimer's cases is the phenomenon of forgetting how to do familiar tasks. We had already experienced Michael's not knowing how to open a simple snap closure on a box and not remembering how to open the dishwasher, and this type of memory loss continued. One day when we were engaged in a minor household repair, I saw Michael look with confusion at the screw I had handed him to replace a missing one.

"I think we need to use a screwdriver," I said tentatively, not understanding why he was hesitating.

"Do we have such a thing?" he asked. I hurried to the toolbox and returned with the screwdriver. When he didn't take it, I inserted the screw and began turning it with the screwdriver.

I stopped and asked, again tentatively, "Would you please finish it? You can tighten it much better than I can." He did, looking at the screwdriver with a big grin on his face when it was done.

"I've never seen anything like this in my life! It's a wonderful thing to have. Where did you find such a thing?" he inquired excitedly.

My breathing was shallow and rapid by then, and I had an acrid taste in my mouth as I answered around the lump in my throat, "I see these things in the store now and then." I walked away quickly, not wanting to look at him at that moment or have him see the emotions that must be showing on my face. It was disturbing and unreal, what should have been a normal moment in our lives, now broken into puzzling pieces.

One thing I did well, though, even after this and other similar incidents, was to continue going through my days as though life were still the picture I thought it should be. Not that that is a bad thing to do, but eventually it becomes impossible. The picture becomes blurred, the colors run and bleed, the outline faded and out of focus. The pieces don't fit together, and there is no pretty box to put them into, out of sight as far as denial makes that possible.

After Michael was enrolled in an adult day care center (see Chapter 6), he noticed how tired I was at the end of a long day when I collapsed on the sofa as soon as we got home. Even though I was surprised, it felt wonderful when he said, "What can I do for you to make you feel better?"

Knowing that fixing supper or taking me out to eat were not rational choices, I could think of nothing other than, "I would love a glass of water." He strode into the kitchen, and I heard cabinets and the pantry door open and close several times.

He came back into the living room and said, "And where would I find it?" I got up from the sofa and went with him into the kitchen, picked up a glass from the cabinet, turned on the water and filled the glass. Then, not knowing what else to do or what to say, I handed him the glass and returned to my seat on the sofa.

He came right behind me, proudly handed me the glass of water and said, "Let me know if there is anything else you need." What a painfully sweet thing had just happened. That piece of the puzzle had a jagged edge that hurt, even with the sweet form. It was one of those pieces I didn't know where to put; it didn't seem to fit anywhere. That was the end of my days that were crafted from denial. The Alzheimer's picture was now clearer than the picture of our life as it should have been.

(Continues...)

Excerpted from The Other Side of Alzheimer'sby Martha-Lee B. Ellis Copyright © 2012 by M.L.B. Ellis. Excerpted by permission of BALBOA PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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