October 18, 2019•712 words
Content notes: death, dementia, disability
(Spoilers ahead.) "Prognosis" is a memoir by Sarah Vallance, recounting her experience of suffering a traumatic brain injury (TBI), her recovery and her life afterwards. It's a pretty incredible story of survival, but what stuck out to me was her attitude and almost preoccupation with euthanasia rather than living in a nursing home or similar care. It starts with her father, who died from cancer. In his final days he asks Sarah for help to die, which she doesn't give, and that haunts her as she sees his suffering. Later, a decade or more after her TBI when she has recovered to a pretty decent cognitive baseline, she starts experiencing "new" cognitive problems. She becomes "sick with fear" that she now has dementia: "I had already decided the only sensible thing would be to kill myself as soon as I learned I had a form of dementia." She then spends pretty much seven years in "anxiety and depression", waiting for the dementia/diagnosis which does not come. At least not to her; her mother is diagnosed with it. She eventually finds a new perspective on life with her psychiatrist and a new relationship (with a doctor who specialises in dementia, no less).
The view of "I would rather kill myself than be put in a nursing home" is not an uncommon one. It is little interrogated. It's not far from "I would rather be dead than disabled", which is often expressed even to the face of disabled people. Disabled lives are often not valued by non-disabled people, and it makes the relationship between disability and medically assisted death (MAD, a.k.a. euthanasia) very fraught. Too often decisions are made for disabled people, not by them, and it can be literally life threatening.
In the past year or two I have learned a fair bit about dementia, as a result of my own mother's diagnosis with FTD. The Wicking Centre's "Understanding Dementia" MOOC is an outstanding resource here. They do a great job at not objectifying patients but centring their experience.
I don't know if their course explicitly goes over this, but I think one thing I came away from it with was realising that the pain of caregivers (for example, seeing their parent or partner forget who they are) is not necessarily a reflection of the pain of the person with dementia.
Wendy Mitchell, in her book "Somebody I used to know" and her ongoing daily blog "Which me am I today?", talks about how with dementia she lives much more in the present. In "Prognosis", after Sarah's mother's diagnosis (her mother goes to live in a nursing home, which comes with no comment despite Sarah's feelings about that for herself), their relationship improves dramatically as her mother almost changes personality and becomes friendly rather than combative, as she has been Sarah's whole life. So I think the experience of having dementia is not necessarily one of constant pain.
At the same time, in the late stages of dementia, I know the person typically is in a lot of physical pain, unable to care for themselves or communicate, and not showing any signs of enjoying life. I guess there is no bright line about where MAD may be appropriate and that is what makes it so tricky. There was a recent Canadian case which is a major precedent, for MAD for a dementia patient.
I guess any time someone goes through a life-altering experience, there is a period of adjustment and perhaps mourning. It's notable to me that Sarah never seeks, for example, a support group for people with TBIs. (That's partly projection, because that's what I would do, and the memoir does reveal that Sarah has always been more of a loner.) People who go through these experiences are maybe often not keen to identify as people with disabilities. I think partly it throws up the assumptions and value-beliefs that people without disabilities have, and it's uncomfortable to recognise these.
Maybe the problem with the attitude "I would rather kill myself than be put in a nursing home" is that it underestimates the human capacity to adapt. It won't be life as you know it, but that doesn't mean it will be devoid of love and joy.