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Mastering our dread of Alzheimer’s

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

This does means that relating to people with dementia requires adapting. Trying to make them adjust to our version of reality is often counter-productive. Quizzing them, for example, about what day it is or what they had for breakfast only stirs anxiety. I like the joke about George W. Bush visiting a care facility and asking an elderly woman, “Do you know who I am?” She answers, “No, but if you go to the front desk they can tell you!”

Laura Wayman in her very helpful book, A Loving Approach to Dementia Care, notes, “You will never win an argument with someone with dementia.” So don’t try. Wayman teaches the “affirmative response” method.

As we prepared to leave the family cabin at summer’s end, my mother began to obsess about my grandmother’s collection of ceramic roosters and chickens, which sits on the shelf above the stove. She insisted that we always took them all down and put them away before we left, which had actually never happened. Arguing the point was pointless. So I simply said, “Right, okay, don’t worry I’ll do that after you leave and before I close up the cabin.” The chickens came up two or three more times. I said the same thing. It was okay.

One day this summer I took my mother and another older friend on a cookout by what we call Hurricane Creek in the Wallowa Mountains. As I built a fire for hot-dogs and smores, my mother sat at the picnic table. I noticed she was swinging her legs like a 10-year-old. She was in her “joy zone.” She loves the mountains and trees, the sky and clouds. As the fire caught she said (repeatedly), “Isn’t that a nice fire!” The next day she had no memory of our cookout, but she was fully present, legs-swinging with the music of the stream and enjoying it at the time. It occurred to me that she was doing what the Buddhists urge on us all: living in the moment.

Better than muttering “just shoot me” will be coming to grips with our fears, learning from those who experience dementia, and becoming more inclusive of people who, as Al put it, “may mess up and may not remember your name.” There are worse things. Like those of us who don’t have dementia forgetting their names and forgetting them.

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