Oct 28, 2013

What I Regret Most About My Days as an Alzheimer’s Caregiver

I consoled myself by thinking he wouldn’t know the difference, but I later found out from one of the aides that he had asked for me. He had asked when I was coming.

By Marie Marley
+Alzheimer's Reading Room

Being the caregiver for a person with Alzheimer’s is a difficult journey to take.

First you have to learn new and creative ways to interact with your loved one;  then,  you have to constantly adapt to the person, who changes significantly as his or her disease progresses.

You also must deal with the pain of seeing your loved one’s condition decline and you have to accept the fact that you are losing who the person used to be.

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I was the caregiver for Dr. Edward Theodoru, my beloved Romanian gentleman, scholar and soul mate of thirty years during the seven years he had Alzheimer’s.

During that time I did adapt to his ever changing state and I eventually learned how to communicate with him.

I learned how to “reach” him.

I found creative ways to interact that were meaningful to both of us. We laughed at the little games I made up to play with him and we experienced feelings of love and affection for each other.

Even though I eventually was able to accept his condition – to make peace with the fact he had Alzheimer’s - I wish I could do it all over again. I wish I knew then what I know now about dementia.

Over the past two years I have published more than 150 articles about Alzheimer’s caregiving on the Alzheimer’s Reading Room and on the Huffington Post.

When I started taking care of Ed not only did I not publish any articles, I didn’t read any either. I was too upset and I was certain that reading about Alzheimer’s would be too distressing for me.

How unwise I was.

There are many fine books on the market that help caregivers, that show them new ways to be together with a person who has Alzheimer’s. That give so many tips on how to deal with the numerous problems that inevitably occur when caring for someone with dementia.

And so I struggled alone to find my way as a caregiver. To find solutions to what seemed like an endless parade of difficult issues. In many cases I was successful in finding the way forward, but in other situations I faltered.

Looking back at that period now I have three major regrets.

1. I Didn’t Place Ed in a Nursing Facility Soon Enough

Ed needed to be living in a nursing facility at least two years before I finally got him into one. He had numerous falls and couldn’t remember to press the emergency alert pendant he was wearing. Fortunately, he never injured himself but it was just a matter of time.

In addition, it was unsafe for him to be using the stove because he often forgot to turn it off. I arrived several times to find burnt food in the kitchen. The microwave wasn’t much safer because he could have easily set it for a much too long period of time.

Another problem was that I was terrified that if he went out of his apartment building he’d never find his way back and, if he did, he’d never remember the code to open the main door to the building. And he wouldn’t have been able to call me for help because he couldn’t remember my phone number.

Ed was drinking heavily at the time, which was an enormous problem that I thought was contributing to his falls. He was also living a solitary life – never interacting with anyone but me. That certainly was not good for him.

There were numerous other problems as well. Suffice it to say that he desperately needed to move to a nursing home. However, he was adamantly opposed to the idea. Every time I brought it up he said he’d die before he’d go. And actually I was afraid he would literally die, of an accident, if he stayed in his apartment alone.

I had power of attorney and Ed had an official diagnosis of “dementia.”

Therefore I could have taken him even against his will. But I was weak. I was an idiot, actually. I was afraid he’d never forgive me and never speak to me again. I put our relationship ahead of his safety and welfare. What I didn’t know then was that a person with dementia can quickly forget that he or she has even been moved in the first place.

And so I waited. I waited until one day he was so confused he forgot about his opposition and agreed to go. I took him the very next day before he could change his mind. And sure enough he quickly adjusted and our relationship became even closer than before.

I regret having waited so long. If something had happened to him while he was living alone I never would have forgiven myself. I (and he) was just lucky he didn’t get hurt or lost.

2. I Didn’t Touch Ed Enough

When Ed was living in the nursing home – in Cincinnati’s wonderful Alois Alzheimer Center – it was obvious that he needed and enjoyed being touched. When visitors came to see him he would almost always hold their hand most if not all of the time.

I also recall an incident when one of the lovely aides came in and sat down beside him on the sofa. He reached up and stroked her long, blond hair. It was a simple gesture. Had he done that in his former profession as a university professor, he would have been fired. But at the Alois Center the aides and other personnel were often openly physically affectionate with the residents.

In the years before Ed moved to the Center we didn’t touch each other very much. Didn’t hug, didn’t kiss, rarely had any physical contact. And I thoughtlessly continued down that path.

Why I couldn’t see that he needed me to touch him is beyond me, and I have been sorry for it for years.

3. I Didn’t Visit Ed Enough Near the End of His Life

Near the end of Ed’s life I began to visit less often because I was preoccupied with getting a new job. My own job was about to be terminated due to circumstances beyond my control. I really needed to find another position.

When an opportunity arose, I became obsessed with refining my resume and making a trip out to Kansas for an in-person interview. And so I visited less.

Whereas I’d earlier visited two to three times a week, I began visiting only once a week and a couple of times I even skipped an entire week.

I consoled myself by thinking he wouldn’t know the difference, but I later found out from one of the aides that he had asked for me.

He had asked when I was coming.

When I found that out I was bitterly disappointed in myself and my selfish neglect of this man who had meant the world to me.

So these are the mistakes I made, the three things I have thought about a lot and deeply regretted. The things I wish I could do over. But I can’t.

All I can do is hope this article will save someone else from making the same mistakes.
Marie Marley, PhD, is the award award winning author of, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. You can visit Marie’s website at ComeBackEarlyToday.
A similar article appeared on the Huffington Post.

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