Thoughts on the End of Life: Just Keep Me Comfortable and Allow Me to Die
Recently I finished reading Dementia Reimagined by Dr. Tia Powell. The first two-thirds of the book is a survey of the history of dementia treatment from the Medieval period to today. It’s scary to realize how badly we have treated demented people over time, but what’s scary is how badly people are treated today.
However, the most interesting part of the book is the last third where she talks about how she would like to live both in the earlier and later stages of dementia. Like me, both her mother and grandmother died from or with dementia. Not necessarily Alzheimers but some other generalized version of the memory loss that often accompanies old age. The prevention of dementia, like many diseases hinges on diet, exercise and various types of intellectual stimulation. People with more education or an active intellectual life fall into dementia later than their cohorts. I’ve seen this explained as: dementia slowly breaks the connections between brain cells and more educated or otherwise intellectual stimulated people have more connections to break, slowing down the external progress of the disease.
However, Dr. Powell goes beyond that simple bromide (diet, exercise and an active mind) to think about the lives of people caught up in dementia. She says for most people there is a ten-year period between their first diagnosis and death with a slow (or sometimes fast) fallingoff of mental abilities. She suggests thinking about what activities one might enjoy during those early years and preparing for that time.
People with dementia enjoy music, particularly the music from their youth, long past the time they can appreciate anything else. So, she suggests, putting together a playlist of your favorite music against that time. Her list includes popular tunes from the Earth, Wind and Fire, Aretha Franklin and others, songs with special meaning for her and her family including songs performed by or for her children. Creating such a playlist, she says, allows you to look back over your life and collect moment of joy you can share with your future self.
Another thing she suggested that I find appealing is being willing to enjoy the things of childhood as the mind reverts to its most basic self. Demented people, who are mostly women, enjoy playing with dolls, for example. Apparently, many people find that distressing, but, she asks, why? Why shouldn’t caregivers allow the demented whatever brings them pleasure? I still have a doll from my childhood. Perhaps I’ll antagonize my caregivers by taking her everywhere with me.
Similarly, Dr. Powell suggests for people who enjoy reading and stories that, as the ability to follow complex literature, to give the demented children’s stories to enjoy either as traditional or audio books. She’s already pulling together the books she read to her children and collecting other children’s classics for her demented self to enjoy. I can imagine enjoying audio book, perhaps even more than the musical play list. It’s possible I’ll enjoy having some disembodied voice reading to me even past the point where I can follow the plot or even follow the moment story.
The hardest part of dementia is the last years, when the person is definitely dying of either the disease itself or some other failing of old age. There seems to be an effort by many caregivers to prolong that dying process in some mistaken notion that death is worst that living with extreme dementia. For many people who were caregivers for their own demented loved ones there’s the desire not to prolong this period. She suggests thinking through how and how much you want to be treatedduring this time. Most advanced directives don’t include an understanding of the dying process for the dementia, so she suggests documenting your decisions and talking to those you expect to be your caregivers. I was struckby one line that I think summarizes her (and my) view of these decisions: in severe dementia, keep me comfortable and don’t stand between me and the exit. There is a point where continuing to live with dementia is too hard and many people want to be letgo. This is what I want, no ventilators, resuscitations, feeding tubes, or other unhelpful treatments. Just keep me comfortable and allow me to die.
I know this may be difficult for my loved ones. It’s often hard to let a dying person take that final journey. I think it may be especially hard when the final days, months, even years have been difficult for the caregivers. I know that even the most loving caregivers gets tired and want it all to end. These thoughts are then followedby those of guilt about wanting the demented one “to die.” I want to tell them I, too, want to die and not be forcedto hang on unnecessarily out of misplaced feelings of guilt or regret.
Even if you aren’t concernedabout dementia as you age, I think there is some benefit in thinking about that final journey. Many of the things Dr. Powell suggests might prove comforting for someone dying from some other cause. It seems worthwhile to think about it and perhaps to even make plans.
What do you think? Let’s talk about it in the comments.
Mary Ann Clark has published several academic books, but her newest passion is speculative fiction including her novella The Baron’s Box and her latest book The Third Way. She has a Ph.D. in Religious Studies from Rice University, in Houston, Texas, and has taught Comparative Religion at Yavapai College in Prescott, Arizona. She’s on twitter @drmaryann. Learn more and join Dr Mary Ann’s Academy at https://drmaryann.wordpress.com
