Is Alzheimer’s Really a ‘Fate Worse Than Death?’


In a recent column in the "New York Times," physician-author Danielle Ofri described an incident in which she and another doctor were examining a patient with Alzheimer's. "A fate worse than death," the other doctor murmured. Dr. Ofri, too, felt uncomfortable.

There was something almost shameful in bearing witness to a fellow human being's profound indignities.

The patient had been a prestigious artist and intellectual and to see him with only a sliver of his former intellectual capacities was, Dr. Ofri wrote, "beyond heartrending."

It's also heartrending, however, to be in the presence of a person dying painfully from cancer or of a person with a severe stroke that leaves her immobilized. These diseases, too, are accompanied by indignities, for instance, having to be wiped clean after defecating. These other diseases, however, do not create shame. Alzheimer's does. Why?

Dr Ofri writes,

"I was embarrassed for him, for how embarrassed he would likely be, if his former self could see his current self. That his current self lacked the capacity to be aware of his state offered little comfort."

Yes, we are embarrassed because his former self would have been embarrassed. That doesn't get us anywhere, though; it still doesn't answer the question of why he would feel embarrassed.

I'd like to suggest that we feel shame because we are looking at our future self as if we had our full mental faculties and were still behaving that same way.

After I became aware of my cognitive decline (and believed for a year that I had Alzheimer's), I did not feel embarrassed for myself even though I had the capacity to be aware of my mistakes. I was fully cognizant of my memory deficits and the problems it caused, and I was aware of my intermittent confusion. I had "lost" the $24,000 through no fault of my own but because my cognition was impaired. I might have been embarrassed if I hadn't told everyone I knew about my cognitive decline, but we all knew what was going on, so there was nothing to be embarrassed about.

True, my decline has been minimal compared to what others suffer. Nevertheless, I do forget names and faces I should remember; I miss appointments, even those I've written on my calendar; I have to ask others to take over more complicated intellectual tasks I can't manage anymore. I'm rarely embarrassed, however, and certainly not ashamed. It's not that I lack the capacity to feel shame; it's that we all know that there's a good physical reason I'm incapacitated.

I'm not alone.

I've communicated with other Alzheimer's patients (mostly in somewhat more advanced state than I) who also report that they feel little embarrassment or shame. Of the hundreds of people who have written me, no one has even mentioned embarrassment or shame on the part of the person with Alzheimer's (and I look forward to some responses to this post).

Why don't we experience embarrassment?

I can only speak for myself, of course, but it seems to me quite possible that, with increasing cognitive impairment, I will still be unembarrassed. Also, as Dr. Ofri mentions, as the disease progresses, I will become incapable of feeling embarrassed. So it's entirely possible that at no point in the course of this disease will I feel embarrassment.

Perhaps Alzheimer's is not a fate worse than death.

What would happen if we began to realize that when we get embarrassed or feel shame in the presence of a person with dementia we are really imagining a future we cannot actually imagine? Perhaps we could stop scaring one another and allow ourselves to relate more naturally to another person's cognitive impairment.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

Watching the Lights Go Out

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This past weekend, I took my mom who is in the early/moderate stages of ALZ to an event with many of her past coworkers and children she taught over the last 35 years. I have been nervous about it for weeks because of this - protecting her dignity. I almost declined taking her but stopped myself and said "she will enjoy it. I don't care about the pitying glances or 'thank God that's not me' looks - I care about my mom." Of course, if she showed anxiety we would make a graceful exit, but that's all I cared about. Of course, if her dignity was in jeopardy, we'd leave. Yes, a few people send glances my way when she repeated herself once or twice, but overall, I think she enjoyed herself and it was worth it. It's not about me or anybody else out there, it's about her. It's like putting on a new pair of compassion glasses - some people get it, some people don't. It made me realize that from now on when I interact with somebody with a disability, I look them straight in the eye and turn a blind eye to their disability. it's easy to do with someone you love, harder with people you don't know. But then you see their soul and it can help strengthen yours. I'm also realizing that what I want to fulfill my life may terrify my mom and I need to work mostly within her comfort zone - a little challenge isn't a bad thing. And I believe there is life after this, so not letting the indignities and challenges kill your spirit. A day ago my brother emails me that mom completely forgot her Thanksgiving visit. i don't believe she did. Her spirit remembers, as does mine, and that matters a lot.
I think one of the most poignant examples of this concept is Glenn Campbell's last song, "I'm not going to miss you." Glenn suffers from alzheimers and sings about the fact that he won't be missing his wife....for the obvious reason. This is so complicated because those of us who have had love ones diagnosed with dementia and/or alzheimers, interject our own feelings about the situation without really trying to understand exactly what the individual is feeling. Thank you for your honest and very vulnerable article.
Everyone's Alzheimer's journey is different. For some people -- like my father, who is in stage 6 --, there are rages, including physical aggression, bowel incontinence, extreme agitation, sleeplessness. He no longer feels embarrassment, though he did at earlier stages. Now, he has lost too much higher brain function to conceive of or care about how he appears to others. Up until recently, he has been sensitive to feeling condescended to or patronized. But he also has bouts of extreme paranoia, so it's hard to separate those concerns. He cannot comprehend his surroundings most of the time, but he is surrounded by love and he still has "good days" in which he is fairly content. Alzheimer's is now being recognized as a terminal disease and the late stages represent an extremely arduous journey, especially for the family. The patient gradually becomes less and less concerned with those outside himself or herself. Embarrassment requires a fairly sophisticated concept of the "other," in particular, the ability to imagine how you appear in the eyes of other people. Not a concern for the late-stage Alzheimer's patient. It's not embarrassment that makes Alzheimer's a "fate worse than death." It's the length of time of the suffering for all, as the late stages last the longest.