Living with Alzheimer’s Disease: A Wife’s Perspective

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“Frank, please sit up here,” I pleaded, patting the doctor’s examination table and urging my husband forward. I was trying to be patient. By nature I move fast, and holding myself back to accommodate his slowness could wear me out faster than manual labor. 

Frank turned in the opposite direction, as if he hadn’t heard, or, as if he were willfully disobeying. But I knew Frank was not merely stubborn. His brain was giving his body the wrong commands. 

Frank has Alzheimer’s disease, an irreversible, untreatable shrinking of the brain which produces neurofibrillary tangles and plaques, disrupting the connection between synapses and shattering the brain’s faculties. Although Alzheimer’s Disease occurs in only 5 to 6 percent of Americans over sixty-five, that’s one and one-half million people. It is the fourth leading cause of death for those over sixty-five. It ravages not only the patient but the patient’s family. Mood, memory, and personality changes lead to the loss of individuality long before the death of the body. 

To date scientists are baffled by the possible cause, or causes, of Alzheimer’s Disease. A number of theories are popular: an oversupply of aluminum in the body; chemical imbalance (autopsies always show a lack of acetylcholine which acts as a neuro-transmitter in victims’ brains); a deficiency in the production of protein; genetics; malnutrition; a long-acting virus, and possibly stress, although this is probably a precipitating factor, rather than a cause. 

Because an absolute diagnosis of the disease requires an autopsy after death, physicians must conduct a careful physical and psychological examination which eliminates other causes for the patient’s symptoms before pronouncing him or her a victim of Alzheimer’s Disease. Those who suffer intellectual impairment might have had strokes, brain tumors, abnormal thyroid conditions, infections, pernicious anemia, adverse drug reactions, or even abnormalities in the spinal fluid. If no symptoms of these conditions appear, then it may be assumed that the patient suffers from Alzheimer’s Disease.

My husband had undergone such an examination in 1980, and the prognosis was disheartening. Anyone marrying a man seventeen years her senior must expect that gap to make a difference toward the end of life, but never did I dream that my sturdy, formerly sharp-witted husband would ever be lodged in a nursing facility, completely incompetent and impossible to care for at home.

We’d both been married before, but ours was a solid relationship based on mutual admiration. When I married Frank, he was the type of man people considered “solid.” A former bishop currently serving on the high council, Frank was respected by everyone. He was the man I pictured myself growing old with, graciously and gradually.

In my secret thoughts, I knew we might be forced to cope with illness, some swing in finances, or one of the other problems that frequently accompany old age; but I decided that if we could share ten good years, it would be worth it. We had ten. Exactly. Not all of them were “good,” but I had no regrets. Frank had shown me respect and consideration. He had permitted me to grow, to follow the beat of my own drum, and I was deeply grateful.

Frank had always been forgetful, but I was unaware of the extent of his problem until after we married. I blamed his loss of hearing for a time. Naturally, he couldn’t be expected to recall details if he hadn’t heard correctly. Besides, I rationalized, he was a busy general contractor wrestling with the burden of a decreasing market and escalating costs but still deserving of his reputation as a successful businessman and an outstanding builder. I was proud of him.

But soon I knew something was wrong. Frank became more forgetful, sometimes even defensive and irritable, not the even-tempered man I’d married. When an ear specialist informed us that nothing could be done to correct his hearing problem, I took him to our family physician who diagnosed my husband’s condition as hardening of the arteries. Although Frank had never been tolerant of taking medicine or returning to the doctor for regular checkups, I insisted on rigorous adherence to the doctor’s instructions for four years. Yet Frank’s memory grew worse. I had to double-check everything he did or said. If I didn’t, we found ourselves in serious difficulty.

On the advice of a friend, I took him to a geriatric specialist who gave him a thorough examination. A week later the doctor said, “Mrs. Lemperle, your husband has Alzheimer’s Disease. His condition will gradually deteriorate until he will be unable to perform even the simplest tasks for himself. In time he may have to be admitted to a nursing home. For now we will try to control his agitation with tranquilizers.”

I was appalled. “No, doctor. I won’t give him tranquilizers. He has such difficulty thinking as it is.”

The doctor shrugged. “You will, given enough time. It’s the only way we have to control these patients, and unfortunately all we can do is control them … for the benefit of the caretaker.”

“Not now, then,” I insisted. “He really isn’t that much trouble. By nature he’s a very gentle man.”

“You have no idea what you are facing,” the doctor commented.

He was right. Now, five years later, Frank no longer knew my name or his own identity. He had protested every mile of the trip to the doctor’s office, and I was steeped in anxiety, wondering how I could get him back safely to the nursing home where I had admitted him twenty months earlier.

“I guess I made a correct diagnosis, didn’t I?” the doctor observed, adding without a trace of smugness, “Unfortunately.”

“Yes,” I admitted with a sigh, “and I placed him in the nursing home just in time.”

He nodded. “I know. You were destroying yourself.”

But I wasn’t thinking of myself. As hard as it had been on me, it must have been infinitely harder for Frank. Dear man, how could he have faced such a future? He’d always been ruggedly independent. Now he had to have someone bathe him, change his clothing when his bowel or bladder control failed, and supervise him every minute of the day and night. Thankfully, he was no longer aware of his environment or his condition. I was grateful that he was spared that knowledge even while I grieved over the loss of the man I had known, for now he was merely the framework of the man he had been, without any of the inner workings.

After the diagnosis, Frank grew steadily worse. At first he misplaced tools or his glasses, but later I had to ransack the house for the money he had collected from our renters and stowed away, forgetting where he’d put it. A year after Frank had been admitted to the nursing home, I found ten twenty-dollar bills in our bedroom closet, under a stack of genealogy papers.

Soon after he started misplacing large sums of money, he cashed a check for $1,500 on an account with nowhere near that balance. The doctor advised me to take responsibility for all money matters.

As I straightened out our checkbooks, I realized that Frank could not continue to build. On one luxury home alone, we had lost over $23,500 plus two years’ work! He had no capital, and two large homes were still in the process of completion. We let them revert to the developer. We had no choice, no liquid assets.

On top of forced retirement, which he protested, Frank was served a summons for an industrial accident that had happened two years earlier. We were being sued for $250,000. Even though Frank was not in charge of the area of the accident, as one of several contractors he was still involved in the lawsuit. I secured the services of a good trial lawyer who assigned a junior partner to our case and settled out of court for $2,500. We borrowed the money and paid it off, relieved to be cleared of liability.

This hit Frank hard. In some strange way, I think he felt he had done something wrong. Because he couldn’t remember, he felt guilty. His condition grew worse. If he went on an errand, he usually forgot where he was going and why, and returned confused and depressed. He could still make his way to the corner grocery store for his evening paper, but neighbors told me he was walking into the street without checking traffic. For a while I made an excuse to walk with him each day, but soon he sat with the paper unopened in his lap all evening. Frank could no longer read.

Some of our neighbors who had known Frank for over forty years were confused and uncomfortable. One man complained, “Your husband doesn’t make any sense.” I tried to explain Alzheimer’s, but the man was unable to comprehend a disease that sapped the mind but left the body healthy.

Another old friend was Frank’s home teaching companion. He couldn’t understand why Frank still wore his work clothes when he rang the bell. “Why, we talked about going teaching just last Sunday,” he exclaimed. I suggested that he inform me when they made plans so that I could have Frank ready on time. The friend looked baffled. I tried to explain. My words went over his head. “Oh, we all get a little forgetful as we grow older,” he answered lightly.

These reactions were typical. People did not take Alzheimer’s seriously. I became very depressed when I realized that neither Frank’s family nor our bishop accepted my statements about his illness. They felt, I’m certain, that I was exaggerating – even that I was the one having a problem. I had literally no help, no relief from the constant care, except from my daughter who gave me short breaks on weekends when she came home from college.

We moved from Salt Lake City in 1983 to Mantua, a small town where Frank could tend a raspberry plot, weed and garden, and chop down trees. We lived on income from my teaching and writing, Social Security, and rental properties. Frank seemed happier for a few weeks. But it wasn’t long before he started awakening at night. Clasping his hands to his head, he’d sit up abruptly, moaning, “Oh, I think I’m going crazy!”

Then we’d both walk the floor, stopping for a cup of warm cocoa and hot buttered toast as we talked out the hours of the night. Usually I could guide him back to bed. I never knew if his distress was caused by nightmares or physical pain, but it was obvious that he knew something tragic was happening to him, and he was frightened. These were our most difficult days. After several nights of sleeping only a few broken hours, I began to feel like a zombie and act like a tyrant. I was exhausted, with no relief in sight. Frank assumed the agitated pattern of a typical Alzheimer patient who wanders continually without reason. He had to be supervised twenty-four hours a day. I’d heard of too many old people who simply wandered off in the night to their deaths. I didn’t want to wake up one morning to find my husband missing. When he was up, I got up, too, sometimes as many as twelve to fourteen times a night.

Once I mentioned the possibility of a nursing home to Frank’s sons. They refused to discuss the matter. No father of theirs would ever go into a nursing home. Homes were for people without loving families. Yet neither of them, during the entire seven-year ordeal, ever offered to take over, even for one full day, nor did they visit him regularly. This had been a typical pattern, but it was aggravated by Frank’s illness.

Making the inevitable decision myself, I investigated facilities from Logan to Salt Lake and finally found one with a homey atmosphere and rates that I could afford. I packed Frank’s clothes three times before I finally delivered him to the home; and if his bowels hadn’t become impacted, I suppose I wouldn’t have taken him then. He was in excruciating pain, and I didn’t know how to help him. He needed professional nursing care around the clock. I was willing, but I wasn’t a nurse—and I was only one person.

The day I admitted him, I cried all the way back home. I felt like a traitor. I mourned as though Frank had died. I felt empty, lost. I didn’t know what to do with all those hours on my hands. My sleeping patterns have never returned to normal, but immediately I started sleeping four or five hours at a time and I felt new energy surge through my body.

Although I telephoned every day to see how Frank was adjusting, the head nurse thoughtfully omitted certain details. Later I learned that my husband had wrecked a door, broken through a window, tried to climb over a six-foot fence, released a foam fire extinguisher, and generally made a nuisance of himself. His adjustment must have been as agonizing as mine.

To aid in the patient’s acclimation to a new environment, the home allowed no visitors for three weeks. But when I was allowed to visit, he seemed calmer, though he thought I was getting a divorce. I assured him I wasn’t, that he was there simply to get well. He wanted to come home – to “work,” he said, as if he could. “When your bowels are regulated, you can come home, dear,” I told him, not quite telling a lie. If he’d been able to function on his own, I would have taken him home gladly. But I knew that his loss of control was permanent. The brain cells that controlled those functions were dead. This kind of deterioration would continue until a vital organ was affected. Then he would die.

Several times I tried to bring him home for short periods, but the visits left both of us more frustrated than ever. Finally I concluded that he was as contented in the nursing home as he would be anywhere. I was right. In a few short weeks he refused to take even a short ride in the car, protesting he was “tired” and wanted to go “home”—to the safety and security of the nursing home.

Now Frank shuffles along the halls, hour after hour day after day. His chin touches his chest, his eyes are cast downward, searching, it seems, for his lost mentality. If you force him to look up, his eyes are rheumy and blank ; and if his pattern is disrupted, he becomes agitated and strikes out at whoever he feels is responsible. The nursing staff is patient, friendly, and quick to dodge. They hold no grudges. Almost all of their patients hit them at one time or another.

Frank probably has less than a year to live. He is unable to do the simplest tasks for himself. He has forgotten how to shave, brush his teeth, go to the bathroom. He cannot dress himself or make a bed. He does not know his own name, his past, his sons, or me. Last time I visited, as usual I said, “I love you, dear.” There was no response. He didn’t lift his head nor did he press my hand. Instead he answered, “Thank you,” without expression, like a prompted child. He had shown more enthusiasm for the chocolates I had brought for him.

While my belief in the eternal nature of human beings has kept me from dwelling on the justice of God, his mercy or fairness in this situation, I have learned a number of things that may help me become a better person. My general makeup has always leaned toward intolerance for infirmity, but Frank’s condition forced me to develop patience. Now I have a fierce appreciation for old people, who, through no fault of their own, find themselves superfluous—even ridiculed—in our youth-oriented society. I have become a self-educated though unwilling expert on Frank’s disease as well as on the care and treatment of older patients. I have many opportunities to share that knowledge with those who are frustrated in caring for their own loved ones and often, like me, feel that no one understands.

From watching my husband fail in both mind and body, I believe I have gained a greater perspective of both eternity and the segment of life called mortality. Small issues don’t bother me as much as they did before Frank’s illness. I find myself looking to the eternal nature of things, rather than being annoyed over petty daily irritations. Depression seldom plagues me. I’m too busy trying to be productive by setting my life in order and managing Frank’s estate so that I’ll have the money to pay for his care and provide for my own livingģ I feel, in a bedrock way, that if I do the best I can, God will provide. Frank was good to me, and I want to show my gratitude to my Heavenly Father for the blessings I’ve derived from this period of tribulation.

If I’d had a choice, of course I would have chosen to have this cup lifted from our lives. Frank didn’t deserve to spend his last days trapped in a body with no mind. But I know that we cannot expect justice on earth, only in the life hereafter. I count on that. I welcome Frank’s imminent release from the prison of Alzheimer’s disease, for I know that only through death can he regain his individuality, and I long for that with all my heart.

Though I yearn for him to pass from this life, I also dread it. I’ll miss my afternoons at the nursing home where I try to maintain some kind of normal contact by pacing the halls with my husband, by holding his hand and feeding him chocolates. I’ll miss my talks with the schizophrenic down the hall who writes poetry like: “Roses are red/ Violets are blue.’/ I’m schizophrenic/ And so are we two.” I’ll also miss the ninety-six-year-old gentleman in the wheelchair who takes my hand, kisses it in courtly fashion and repeats, without deviation, “How’s the sweetest little girl in the world?”

I’ll also miss the nurses who care for my husband. Dedicated servants of the ill and infirm, they inspire me by their untiring efforts in dealing with those unable to care for themselves. They treat their patients with dignity and love as they wash faces, change diapers, and coax food into reluctant mouths.

In the last eleven years, I’ve learned something about patience through adversity. Knowing what I have experienced, I might have had more reservations about marrying an older man. Yet in my heart of hearts I feel nothing but gratitude for sharing a small part of Frank’s life, for I anticipate, with full faith, that in the world to come, he will again be his own vital self, keen-minded and in robust health—and probably supervising the building of heavenly homes with all the enthusiasm and skill he manifested throughout his productive years on earth.