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Mastering our dread of Alzheimer's

Their memory is shaky, and you can't really reason with them. But these are still valued people, and we can learn ways to appreciate and accommodate, as the author is learning from experience.

Care for Alzheimer's and dementia patients in a Midwest facility.

Care for Alzheimer's and dementia patients in a Midwest facility. Kansas Poetry (Patrick)/Flickr

You’ve heard it. Maybe you’ve said. “If that happens to me, just shoot me!” “That” is dementia or Alzheimer’s Disease.

Others mutter, in some ways more darkly, about "saving up meds" for an overdose. What are we saying and why?

I spend part of the summer caring for my 93-year-old mother at a family cabin in Oregon. She has moderate dementia. She loves to be at the cabin, though shortly afterward she doesn’t remember that she’s been there. This summer I also read several books on dementia. And I pondered the eight years that my Dad had Alzheimer’s before his death.

All of this leads me to think we ought to think twice about the “just shoot me,” and other off-hand comments and lame attempts at humor.

Not to say the prospect of dementia isn’t scary. It is. We are scared. According to a 2010 Metlife study, people over 55 dread getting Alzheimer’s more than any other disease. And, as Margaret Morganroth Gillette pointed out in a recent New York Times Op-Ed (“Our Irrational Fear of Forgetting”), “Greater public awareness of Alzheimers, far from reducing the ignorance and stigma around the disease, has increased it.”

But there’s a kind of self-fulfilling prophecy at work here. Dreading isolation, we isolate. Dreading a diminished life, we diminish. Dreading the loss of our powers, we disempower.

All the books I read on dementia agreed. Half of us who live to be 85 will experience some form of dementia or cognitive impairment. (They also note that "dementia" is a symptom not a cause. About 60 percent of the time the cause of cognitive impairment is Alzheimer’s. But 40 percent of the time dementia is caused by other things like a stroke, Parkinson’s or Huntington’s Disease, or one of a host of other causes.)

So if in a group of 10 friends all live to be 85, half of you will have some form or level of cognitive impairment. We should shoot everyone? Probably not.

Susan and John McFadden in their fine book, Aging Together: Dementia, Friendship and Flourishing Communities, argue that dementia needs to be viewed as a disability. As we have learned to include and accommodate people with other disabilities, we need to do so with those who experience dementia.

They tell a story of when Al, a larger-than-life extrovert with a bawdy sense of humor, missed several weeks of Rotary, rumors began to circulate. Finally, Al appeared at a meeting. When time came for announcements Al approached the podium. “Some of you have probably heard that I have Alzheimer’s Disease,” he told the hushed room. “Well I do. For a while I was too embarrassed to come to meetings. But a friend said to me that if Rotary could put up with me the way I was before I had Alzheimer’s, they can put up with me now. I may mess some things up. I may not remember your name. But if I can deal with Alzheimer’s, you bastards can too.” Al received a lengthy round of applause. In the coming weeks, Al’s dementia became simply a part of who he was rather than something to speak of in whispers. He was able to attend Rotary for two more years before his condition worsened.

Yes, dementia and Alzheimer’s are tough. But they aren’t the end of life. There’s still a person there. There’s still someone who can experience joy. Someone who can grow and contribute to the growth of others.

Ours is a “hypercognitive” society where rational function is highly-valued. Part of what my experience with my own parents and others with dementia has taught me, confirmed by my reading, is that people with dementia operate more on emotion than cognition. They feel stuff. They are in touch with their feelings. They read and respond to the emotional state of those around them. It's not how we operate by and large, but is that such a bad thing?


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Comments:

Posted Thu, Sep 22, 9 a.m. Inappropriate

A valuable piece, Tony. We can become agitated when loved ones do not react as we expect them to do. But, in their minds, they are experiencing another reality which may be quite satisfying to them.

My late wife's mother was a sharp-minded educator who died in her early 90s. When my sons visited her in a nursing home, she thought they were her brothers. She inquired of them whether her daughter (their mother) had ever gotten married and complained that her parents seldom came to visit. Yet she was happy and smiling.

The hackneyed line about Alzheimer's, of course, is Ronald Reagan's: "The best thing about Alzheimer's is all the new people you get to meet."
When I lived in Santa Monica from 1998-2001 I periodically encountered Reagan walking on the beachfront promenade, accompanied on each side by Secret Service agents. He would leave the sidewalk and walk through ankle-deep sand wearing his dress shoes. People greeted him and he responded amiably, obviously unaware. He repeated his routine regularly and clearly was happy walking in the sunshine and salt air. His physical appearance was of a much younger man.

I visited a year before his death a famous former boss of mine, then living in New York, whose physical appearance gave no hint of his Alzheimer's, which had developed quite rapidly. At luncheon it became clear that he had no idea who I was. His wife asked me to come again. Visitors had stopped coming, intimidated by their non-recognition, and she had become a sometimes lonely caregiver.

All of your observations are right to the mark, Tony. This is not some dread condition. It is one of many which comes to us as we age.

Posted Thu, Sep 22, 11 a.m. Inappropriate

Good piece, thank you. My reservation is that the focus is on the host who quite obviously suffers only marginally. As with many diseases it is the caregiver who deserves our sympathy and esteem. I think the fear of alzheimer's ("just shoot me") is not for one's self but for the survivor(s); a point that is apparent but needs saying.

kieth

Posted Thu, Sep 22, 11:10 p.m. Inappropriate

I understand and applaud someone like Dr. Robinson appreciating his mother's ability to still experience pleasure. But she is still in the moderate stage, and she does not experience the dementia rage that many do. And I think we need to listen to and care about people who take care of people with dementia fulltime, not part-time during a particular season, at a pleasant place like a summer cabin. Many caregivers are trapped in a small apartment with someone who will need more and more care until their death, long after they have ceased experiencing pleasure, and way long after their caregivers have thought they could not do it anymore. Medicare does not provide nursing home care for people with dementia, because it it can't be treated -- it's a "custodial care only" condition. So families without adequate funding for private-pay care must do it, and continue doing it, to the point of exhaustion. After that experience, or even before, when they observe what others are going through, they have a perfect right and much reason to say "just shoot me."

sarah90

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