Being the caregiver for a person with Alzheimer's is a difficult journey to take. 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. I wish I could do it all over again. 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 I knew 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 my need for 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. He and I were 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.
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 biggest 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 is the author of the award-winning "Come Back Early Today: A Memoir of Love, Alzheimer's and Joy," and the co-author (with neurologist, Daniel C. Potts, MD, FAAN) of "Finding Joy in Alzheimer's: New Hope for Caregivers." Her website, ComeBackEarlyToday.com, contains a wealth of helpful information for Alzheimer's caregivers.