Alzheimer's: a slow death of mind and humanity

The fellow who lives here beats me

I recently followed a discussion thread that involved Alzheimer’s disease, albeit somewhat peripherally.

By sheer coincidence, as I was sorting through some old files I found notes I had jotted down when my mother was alive and in the initial stages of Alzheimer’s. It was an increasingly grotesque experience as I saw her cognitive abilities to decline until she was non-verbal and recognized no one. At the time, I was thinking that I would write a book about the experience, but after years of watching her decline, including three in which she had no idea who I was, it was too close and too painful.

In the beginning, it was frustrating but manageable. Let me recount what I wrote at the time:

After my father, Les, died, my mother came to live with us. One day after she had gone to her room, I found a note on an end table in our living room. It said, “I am being beaten. The fellow who lives here beats me.”

As “the fellow who lives here,” I found the note disturbing on several levels. One, of course, is that somewhere in the growing recesses of her mind, she felt abused. A second is that I was identified as the person doing it. Bluntly, I had always been the fair-haired boy, and I found this indictment bewildering. Third, I wondered what would have happened if someone else had discovered the note. Even if the unfounded accusation were not reported to authorities, I would always be under suspicion. No one creates that sort of accusation out of nothing, right?

Wrong. I had always almost obsessed about pleasing my parents, sad but true.

He's at it again

Another time we were sitting together on the sofa. When she stood to leave, she pressed a paper into my hand with a significant look. It was almost the same as the previous note: “Help, I’m being beaten.”

In all of my life, I never knew anyone to raise a hand to my mother. To this day, I cannot fathom how the idea got into her head. Thank goodness, she had again passed me the note, but it was distressing.

After she had suffered several strokes, I found an adult day care (ADC) where she could spend the day while I was at work. I had been working from home, but interruptions and nearly constant demands on my attention were taking a toll, so adult day care was a relief…Until the first time adult protective services contacted me—after my mother had told staff that she was being beaten.

I immediately called her doctor, whom we saw often, and asked for him to fit us in. When I explained why, he agreed and I took her directly to his office for an examination. He called protective services and told them that there was no evidence of abuse.

The same scene played out twice more until the physician wrote a strong letter to protective services, with a copy to ADC, stating emphatically that he knew us well, saw my mother often, and never had seen any sign of other than good care. I never again heard from protective services.

That was the most worrying situation, at least in terms of the possibility of my being arrested and charged or having the neighbors hear rumors of my beating her. And they probably would have believed it. Let me tell you why.

Help! He's killing me.

On an unusually pleasant evening, my family and I were enjoying our sun room with the windows open. As they filtered off to bed, I said that I, too, was ready for bed. When I stood, my mother gave me something that might be described as a suspicious glare. I walked toward the rocker in which she was sitting and extended my hand to help her up, at which she threw up her hands and began to scream. “Help!" He’s killing me!”

That was just awkward. All I could think of was "What will the neighbors think?”

I sat again until the pounding in my chest subsided and my mother seemed to relax a bit. When I tried again, she went quietly to bed.

One of the mystifying aspects of her illness was the lucidity that seemed to come and go. It was like living with someone with multiple personalities. I guess it actually was living with someone who had multiple personalities, just not in the classic sense.

Let me give you an example that I wrote pretty much verbatim at the time:

Don't tell me he's dead too

Mother and I were again sitting on the living room sofa when she said that I didn’t understand how hurt she was by her son. She never sees him anymore and she doesn’t understand why.

She had three sons.

Then she gave me a pained look and said, “Don’t tell me he’s dead too.”

“Who,” I asked.

“Clive,” she said.

Yikes.

I looked at her intently and said that he is fine. He will visit when he can.

After a moment I asked, “Who am I?”

She stared at me vacantly for a moment before smiling. “You’re Clive.” She laughed.

I began to tell her about my day, more to be talking with her than because I thought that she would retain it, when she interrupted.

“Did they call?”

“Who’s that,” I asked as if it had slipped my mind. I was pretty sure that in her mind we had had some sort of conversation that I couldn’t hear. Nonetheless, I felt vaguely guilty for not paying attention.

“About your father,” she snapped.

“Not yet,” I said slowly, thinking I could figure this out as we went along.

“They’d call if something is wrong,” she said definitively. I still didn’t know who “they” were.

“Nothing is wrong,” I temporized.

“When he gets home, he’s going to hear about it,” she tells me. And we both laugh.

My father had died several years before. Believe me, I remember. I had to go to their home to break the news to my mother. My father had never come home after breaking his hip. His health just seemed to decline steadily.

They just went to get pizza

Mother was raking leaves when I arrived.

As she watched me walk toward her from my car, she stopped raking and said, “He’s dead, isn’t he?”

I nodded and she broke down in tears. I held her until the crying subsided and she asked whether I’d like a cup of tea, the salve that heals all wounds. I said that I would and we started for the house. On the way, she asked whether we were going to visit my father after lunch.

I took her hand and told her again that he had died. Again she broke down in tears. We repeated that scenario a half-dozen times until, thinking to distract her and to give myself a much-needed break, I asked if she would like to go to her favorite restaurant for lunch. She would.

When we had settled into our seats, a server who recognized us approached with menus. She smiled brightly when she saw us and asked how my father was.

“Oh, he’s fine,” Mother chimed in. “We’re going to go see him after we eat.”

When the server left, I took Mother’s hand and told her that she had to look at me and pay attention because this was just too hard on me. Every time I told her was the first time for her and, frankly, my nerves were shot.

She looked at me and said, “He’s dead.”

I nodded. She cried.

But that was it and it seemed to finally take root. When it was time for the funeral service, Mother was more out of things than usual. One of our out-of-town friends said that she would stay with Mother while we went to the service. It would be a difficult enough time and the chances were good that she wouldn’t remember anyway. Whether or not we were right, the family decided to go with that plan.

Shortly after we left the house, Mother turned to my friend and said, "They’ll be right back. They just went to get pizza.

Is Clive still dead yet?

But now the two of us are on the sofa in a conversation I was not really privy to.

Mother said, “You think he’s okay?”

“Who’s that?”

“Your father!”

“He’s fine.”

“Did they call?”

“No.”

Then how do you know he’s fine?”

And check.

“Because they’d have called if he weren’t.”

Enter son number one, about ten years old, through the front door.

“Was he there?” Mother asked him.

“Who?” he asked.

“Les!”

“Les?” he echoed, looking at me for help.

Mother looked at the floor. “I think I’m losing it.”

Pause.

“He’s dead, isn’t he.”

“Who?”

“Clive!”

Now the boy is really confused as he looked at me sitting next to her.

“He’s using the computer,” I said.

“He’s here?”

Sometimes I varied the answers to save my sanity.

--Where’s Clive--

--Skydiving—

--Where?—

--Fishing.--

--Oh.--

No matter how I answer, I am always a bit unsettled when we mourn my demise. Even when she tells me what a good son Clive was, it is disturbing to casually discuss the late me.

I've fallen and ---Really?

“Has Ted seen your house here?”

Ted was my brother who died in an accident decades before.

I shook my head.

“Isn’t that odd.” She mused. “He’s never been here.”

Sometimes she laughs with us when we laugh because she has asked the identical question in identical form at 30-second intervals for five minutes or more. Sometimes I snap at her when the drip, drip drip gets to me.

Her loss of memory wasn’t the only manifestation of her illness. She didn’t want to eat, so I invested heavily in the supplements that ensure getting necessary vitamins and nutrition. She liked the “milkshakes.”

She didn’t want to leave the house, and when we did, getting her bathed and dressed was always hard. I began throwing my back out on a regular basis, changing diapers, picking her up when she fell, getting her in and out of the bath.

Sometimes, she would just stop talking and stare. I learned that these are called “temporary ischemic attacks”— like mini-strokes where the blood flow to the brain is temporarily interrupted-- and that I would never get used to them.

She wandered the house at night. When she needed help or company she would stand in the hall and shriek my name so shrilly that I believe I actually levitated. I would awaken with my heart pounding, leap out of bed and rush to find her.

She was especially active between 2 and 5 in the morning, so I bought a hospital bed to keep her from wandering and falling when she tried to get up unassisted. She fell often and refused to use her walker because it made her “look like an old lady.” After all, she was only in her late 80s.

One morning in the 2-5 time slot, I awoke when the house shook. At first I thought that it was an earthquake, but then I heard the shriek.

“Help me!”

“”Won’t someone help me?”

I rushed to her room and—found that she had locked the door from inside. I didn’t even know that she remembered how to lock the door. She had never done it before.

“Where are you?” I asked. I didn’t want to break the door in if she were lying in front of it.

“I fell.”

“Where are you?”

“On the floor.”

Thank you.

“Where on the floor?”

“Right here.”

Thank you once again. We’ll be here all week.

“Where on the floor?” I repeated.

“Right here!” Clearly she was losing patience with me.

While I was aware of the Abbot and Costelloness of the dialogue, I knew that the fall from the top of the bed rails was longer than from just falling out of bed. The door was locked and I thought of my father’s fall that broke his hip and deteriorated into death.

She sounded as if she were near the door.

“Move away from the door.”

“I can’t; I fell and I can’t get up.”

“Crawl if you have to, but I can’t get through the door if you are in front of it.”

I heard grunts of exertion.

“Are you away from the door??”

“I can’t get up.”

I tried to push the door gently with my shoulder. It was a non-starter, like knocking very quietly so you won’t disturb the person whose attention you are trying to get.

I bumped it harder and harder until I could squeeze through the opening between the door and the giant hunks of splinter that once were part of the door frame.

When I got to her, it seemed that the extra thick backing under the carpet was worth the cost because she had only some bruises. She bruises easily; her skin is almost parchment thin. (Please, do not let her tell anyone that man is beating her again.)

Mother has been dead for more than ten years now, but I don’t think that I will ever be able to revisit those years without a shudder and at least a brief lapse into depression.

A dear friend used to say, “The way you treat your parents teaches your children how to treat you.” I also was much nicer to the children for a very long time. But I also hope that they have whoever replaced Jack Kevorkian on speed dial, because I never want to suffer the indignities of that horrible affliction. And every time I forget someone’s first name, I wonder whether this is the beginning.

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Comments 6 comments

NateB11 profile image

NateB11 4 years ago from California, United States of America

Very good hub. It is a captivating story and it is awesome how you had soft touches of humor in there. I can also say that I relate, because my mother has something along the lines of dementia or the beginnings of Alzheimer's. I've had the police over in the middle of the night, having to explain to them that no one in the apartment complex is really trying to kill her; I know about the repetitive and puzzling questions; and I've been greatly frustrated, to say the least, and am exhausted. Thanks for this article. Very well done.


Clive Donegal profile image

Clive Donegal 4 years ago from En Route Author

Thank you, Nate. I don't think anyone gets it until it strikes at home.


lucybell21 profile image

lucybell21 4 years ago from Troy, N.Y.

I can imagine what you went through. I work in a home for seniors and have seen 3 cases of dementia, and my best friends mom just passed on, and she had Alzheimer's for years. That is my one most fear about getting old, losing my mind. You had your hands full with dealing with that.


Clive Donegal profile image

Clive Donegal 4 years ago from En Route Author

I don't think anyone who has not lived with it can appreciate how it ruins the persons who suffer from it and those who love them or work with them every day. Fighting depression was a daily struggle. I admire the work you do.


LongTimeMother profile image

LongTimeMother 3 years ago from Australia

I'm not surprised the idea of writing an entire book on your experience is overwhelming. I feel emotionally drained just reading this hub and I cannot imagine the lasting effects of having lived through it. Absolutely brilliant though. I've voted it up and awesome. I can't imagine ever reading a better description of living with alzheimers. Thank you.


cdonegal@aol.com 3 years ago

Thank you.

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