Of a certain age

My mother had Alzheimer's. My sister-in-law is currently living with Alzheimer's. A number of my Transitions clients when I worked for hospice had a diagnosis of Alzheimer's. My own lapses of memory are increasingly noticeable.

More than once in conversation with friends I have heard people say, "If I develop Alzheimer's just take me out and shoot me." I myself in the past have told my sons, "If that happens just take me out in the woods, prop me up against a tree, and let the animals eat me." Those are the kinds of statements people make, considering it preferable to be shot or eaten by wild animals than to live with Alzheimer's or other dementia. It is way past time to develop and adopt new language and new attitudes toward not only Alzheimer's, but the entire natural process of aging in general.

The language that has grown up around Alzheimer's is in some ways very militaristic. For the past four decades, we have been "waging war," attempting to "halt," "fight," and "arrest" the "attacks or strikes" of this "menace," causing us to regard Alzheimer's the way we viewed polio prior to the Salk vaccine. With that kind of vocabulary Alzheimer's becomes viewed as a disease epidemic coming from outside our bodies and simply awaiting a vaccine or cure.

These war metaphors may have been necessary to get the attention of the public and to help encourage research funding. However, that language has demonized our own human susceptibility to normal aging processes, which we can then externalize. There is promising research being conducted that can hopefully help us understand Alzheimer's more fully and perhaps find a way to postpone or slow the development of plaques and tangles in the affected brain, and that's a good thing.

Even more important than the research is the adoption of a new lexicon for talking about aging and dementia in general, and Alzheimer's specifically. Rather than considering "being over the hill" a negative indicating that meaningful life is over, what if we saw it as a positive time, with some of the struggles and insecurities of younger times passed? Being "further along the path of life" is a kinder, more realistic description indicating you are now someone who has had the life experiences that give rise to wisdom, patience, and understanding.

There is other language around dementia that incorrectly paints the picture of "loss of self," being a "shell of my former self," a "living death" with "nobody home." This stereotypical blanket language implies that the person we know is no longer there, which can make it easier to ignore or not attempt to engage them in meaningful activity. If "they don't know what's going on" why bother to engage or visit them?

The truth of the matter is, identity is never completely gone until death. My mother was still my mother, Alzheimer's or not. The problem was not only her condition, but our lack of proper understanding as to how to meaningfully interact with her. Yes, it still would have been difficult to watch her mental capacity decline and she might still have been difficult to deal with at times. However, had I known then what I know now, I think her quality of life could have been dramatically improved and perhaps our experience of her.

Studies and programs have shown the great benefit of incorporating music, art, and horticulture into the daily activities of people living with dementia. Enjoying music they have always loved doesn't require people to be verbal, and amazing things can happen when deep memories are tapped by a familiar piece of music. People who have been labeled as nonverbal will begin to sing along or talk about things they remember in connection to the music or to that time in their life. They are still here. We have sparked recognition and engaged them.

Art and horticultural activities work in a similar way. Let someone smell a rose or some lavender and they are apt to tell you about their grandmother's or their own garden. We need to take the time and show interest in connecting with those living with dementia and providing meaningful, enriching activities for them. Additionally, there is a much more respectful way to talk to dementia-affected people than what has been employed for so long. (That's a whole separate topic.)

Aging is not optional, and diminished capacity, whether physical and/or mental, is part of aging. As I approach my elderhood, I do know that I don't want to be isolated from my human networks simply because I am getting older. I don't want to be alive physically but living through a "social death." I am hopeful that people will look at my peers and me as "mentors" rather than patients or "victims," with something to offer.

Viewing aging people as contributors to society, rather than a collective burden to be housed and managed, will hopefully prompt communities and organizations to explore how to accommodate, utilize, accommodate and benefit from the presence of elders. Hopefully if we consciously start using different language when talking and thinking about individuals affected by brain aging, we will change our attitudes and behavior toward our aging neighbors and our own aging brains.

How lovely it would be for the Sisters community to coalesce around a more humane, life-affirming approach that connects us to our elders and enables them to live a fuller, richer life that is also of benefit to our community.