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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Thursday, May 29, 2014

“A Fate Worse Than Death”?

Washington DC

In a recent column in the NY 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 clear 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 any more.  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 patient (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.


  1. I think its true that these doctors are using their empathy as doctors, to put themselves in their patient's place, understanding how they would feel in the same situation. We are all caregivers, after all. One has to have empathy to even work in health care.

    Since I worked long term care and hospice for 20+ years, I have seen and been through it all, as a nurse. We calm and soothe, help the patient to understand that its not embarassing, its part of health care, etc. Last September when I had that embolism, laying flat on my back in ICU for 12 hours, I had an accident with a bedpan. I had two male nurses. not much fun. They were very professional and discussed football through the entire peri care. lol. Not something I want to have done at any rate. But its just part of the deal. People have babies, people get cancer, people have amputations, strokes, infections, surgeries, and dementia.

    I remember in nursing clinicals, taking care of a bedridden Alz patient, and out of the room, another nurse and I were commenting, "something like that is why we should all have a loaded shotgun in the corner. but then we'd be saying, what's that thing in the corner?" You live and learn, adapt and understand. I learned to love a whole bunch of people with dementia. And I would have done anything for them, without a problem. And I grieved when they died, even tho I knew they were in a far better place. I like to say that when I die and go whereever we go, I hope to have one grand arrival party waiting for me. =)

    1. Your point about empathy in any health care provider is well-taken. The problem, I guess, is that it's very difficult to empathize with cognitive dysfunction. Dr Ofri remarks in her article:

      For doctors, cognitive currency is our only currency. The idea of the mind vanishing is more petrifying than much of the bodily devastation we are privy to.

      So it's hard for us to empathize with the actual situation (as opposed to our imagination of it).

  2. Anonymous5/29/2014

    My husband is in mid to late mid dementia, not alz. Because of this he is very cognizant of his impairments which creates extreme depression at times and angry outbursts directed at himself for his failures. He is very embarrassed about his condition and doesn't want anyone to know. However, I have had to go behind his back to explain to friends and family the reason for his shortcomings. He was a former college professor and provost, and highly esteemed in his field of expertise. He continues to try to put on a façade to former colleagues but it's very apparent something's not right, which to me, looking in from the outside, seems worse than having the truth be known. Sometimes I almost wish he would lose his cognition to make it easier on him (and me) in dealing with this disease. But then, if he did, I would lose the last vestiges of him as my husband!

    1. I don't want to offer too simplistic a reply, but I wonder if the embarrassment, shame, depression, and anger would be lessened if he were able to tell others about his dementia. It's more complicated than that, of course. For one thing, he can't tell others unless he's unembarrassed in the first place, yet he may not stop being embarrassed unless he tells others.
      I am not sure what the experience is like for others with cognitive impairment, but for me the result of telling others has been very positive.

  3. I read this NY Times column, too, and a very pointed response to it on the website. I think the problem most people have is that they can't help focusing on what's been "lost" rather than on what's there NOW, which is often much more than they imagine as long as they persist in wanting to relate to the pre-cognitive-decline version of the person living with dementia. Yes, we need to relate more naturally; not only to another person's cognitive impairment, but to the other person him/herself: their love and pain, joys and sorrows, longings, fears, sense of humor, challenges, accomplishments - everything that makes them who they are now.

    1. Well said, Bill. I suspect the problem for many is that we never allow ourselves to get close enough to see the "love and pain, joys and sorrows, longings ...." And until we do allow ourselves closer we will see only the loss.

  4. Thank you, David, for another superb blog post on dementia. How do you do it? Shame is a huge additional burden for people with dementia illnesses. Thank goodness my beloved, Jim Landry, chose to "out" himself within a day of diagnosis. How sad that his highly educated, scientific colleagues at the prestigious science journal he produced for 24 years cannot get past their own fears to continue to have a relationship with him. Such a loss for them as well as for him. Most medical practitioners we encounter are sorely under-educated about dementias, even the clinical aspects that affect their treatment protocols. How many times have I laughed out loud when Jim's geriatrician GP begins a sentence with, "Remember, ..." or "How does this compare with how you felt six months ago?" Behind the under-education and lack of curiosity lies the "the shame of the educated class;" the worst fate in the world they can imagine is to lose their cognition, and they lay this attitude on their patients. Such a pity. Thank you for speaking to "truth to cognates." Onward!

    1. Thanks, Nicole. Jim is one of my models for working with this diagnosis.

      Two marvelous phrases I'll try to rememner: "the shame of the educated class;" even better: "speaking trust to cognates."

      Thanks for writing.

  5. When my MIL had a bathroom accident she didn't appear to feel shame, she felt indignant. What she said was, "This is ridiculous." She appeared to be angry at not being in control. She couldn't remember our names yet she continued to use words like ridiculous and conundrum. That seemed to make people overestimate what she could do.

    1. So many of us seem to think there are only two phases of Alzheimer's: cognitively normal and "demented." So if a person uses a large vocabulary, she must be cognitively normal and thus should be able to remember names and events normally. We don't seem to realize that there's a pretty smooth continuum between normal and completely demented and that one function can be grossly affected and another cognitive function can be judged completely normal.
      The practical tragedy is that we also assume that if a person is not cognitively normal then they're completely demented, and we can no longer expect ourselves to relate to them as persons. The end result is that too much is expected of a person early in the disease and the person is abandoned later on in the disease.

  6. People that have difficulty with interacting with someone with dementia just see the illness, not the person. People are people, the world over. they all want the same things, love, understanding and acceptance.

    Twenty years ago, in skilled units, the idea was to reorient the patient to reality. If a woman is wandering looking for her husband (who had died), we were supposed to reorient them, "remember that John passed away last month. And now you live with us." I always thought that was mean. Imagine learning several times a day that your husband had died?

    Since working skilled units and long term care, I have become a prolific liar. I try never to reorient someone. I stay in their reality and understand where they are coming from. One guy was adamant he was leaving, I said, "you can't leave. The blizzard is so bad that the plows were taken off the roads." (It was July, haha). He settled right down. If someone is wandering and looking for a loved one that is no longer here, I know them well enough to use his correct name, and explain that he is busy doing something normal for him, changing oil in the tractor, plowing, planting, etc. and he would be here later on this afternoon. That woman more likely will go sit down for a few minutes. (I do live in Iowa)

    If you can figure out what interests them now, you have a topic you can discuss. Weather, children, grandchildren, horses, dogs, cats, etc. there is always a topic. You just have to have the time to talk with them.

    1. For others who don't know, there is a very interesting book, "Contented Dementia" by Oliver James that offers a good theoretical background for Lee Ann's approach and touting its effectiveness. The essential idea is that we remember that the person with dementia loses the basic memories that day-to-day life requires and must substitute for those lost memories others that remain, even if in appropriate to us. So the trick to communicating is to get into the world of the person who has lost those memories and work from there rather than insisting that they be "re-oriented" to our reality.

  7. Anonymous5/30/2014

    My mother died last summer, of Alzheimer's. She had Alzheimer's for probably 15 years. She was bedridden at the end. My father died 8 weeks before her, of stroke complications. After my dad died, my mom asked us daughters every 5 minutes where he was. Sometimes we told her the truth, which only caused her to grieve his loss over and over again since she couldn't remember that we had already told her that he had died. Her sadness, crying, and moaning for her husband was heart-breaking, for her and for us, so we started to tell her that he was just taking a nap. Somehow she knew, somewhere inside, that he was truly gone because she eventually started to say things like "Why did he leave without me. He was supposed to wait for me. We were supposed to go together." She stopped eating and died 8 weeks to the day that he was buried.

    She was an organized and tidy person all her life. But the last few years, before she became unable to move about on her own, she apparently went through everything in the house, looking for things that might help her to remember who she was. She was looking for her old self. All the tidiness and organization turned into piles of things cast about, drawers pulled out and the contents rifled through. There were scraps of paper here and there where she'd attempted to write down the old songs from her youth, such as Where Have You Gone Charming Billy, with words crossed out and other words re-written on top. She was trying so hard to remember the correct lyrics and get them all written down before she finally forgot them forever.

    She went through a great deal of sadness over these past few years. She would often just sit and cry because she couldn't remember anything. She was on all the appropriate medications. There really wasn't anything that could be done from a medical standpoint. We talked to her, to distract her, but it didn't work all the time. She had an enormous amount of anguish and sadness.

    The things we found, all over the house, after she died, all the things she had sifted through over the past few years, the old photographs and faded newspaper clippings, the mementos of a became very apparent that she suffered a great deal over her own loss of who she was, and that it had caused her profound and intense sadness. And it caused us profound sadness as well, not over what had been "lost," but to know that she had suffered such anguish for so many years.

    It's not the adult diapers, or the occasional accidents, or being spoon-fed that was hard to see, it was knowing that she'd suffered extreme mental torment and confusion for so many years, wandering around the house, hoping to find her self, maybe in a photo, or a newspaper clipping that might jolt her memory, or by attempting to write down the correct lyrics to an old song from long ago. I can see why some people might say this is a fate worse than death, beyond heartrending because that's how I felt, knowing that she'd suffered such mental torment for so so long

    1. Thank you very much for writing your mother's story for us. We need to be reminded that this disease cannot be categorized into one or two simple stories but that each story is unique.

  8. Anonymous5/30/2014

    Thank you. As an observer of several friends (and spouses of friends) and relatives who have recently been diagnosed with Alz or dementia, your sensible, compassionate words ring true, and help us in kind be compassionate and understanding of those who are losing a part of themselves, the part, as your readers say, we are most attached to.

  9. David, a very helpful article. While living in the Twin Cities my wife and I both served as “respite care workers” for adult developmentally disabled. The same held true for every adult we worked with – the embarrassment was often felt more by those they encountered in daily life practices than by themselves. One woman who lived with cerebral palsy would often go out of her way to help the non-disabled feel less awkward and/or embarrassed around her. Her typical response to people who either stared or who glanced and then pretended not to see her was a big smile and a friendly; “Hello. How are you?” She told me on our first outing, “It makes people more comfortable around me, especially when they don’t know how to respond, if I say 'Hello' first.”
    As a care giver, I became aware of my own issues of discomfort and embarrassment – both of which she intentionally helped me overcome.
    Thanks again for sharing your journey.


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