I’m undertaking a 1000-day reinvention project, blogging here daily to track my progress. In Sunday Planning, I plan for the week ahead.
Today for Sunday Planning: planning for what to do if I get diagnosed with Alzheimer’s disease in the future.
The poet Olav Hauge “died in the old way”
In his newsletter Ordinary Plots, writer and teacher Devin Kelly shares poems with thoughts on those poems. This morning, his weekly article analyzed the poem It’s Cold in Big Houses by Norwegian poet Olav Hauge. The poem itself is quite beautiful, evoking fall when it begins to snow and turn cold, and describing loneliness, “huge and barren and leaky under the roof.”
I’m interested especially in the short biography of Hauge’s life by Robert Bly that Kelly includes in the article, which has these lines:
He died in the old way; no real evidence of disease was present. He simply did not eat for ten days, and so he died.
Now we call this VSED — voluntarily stopping eating and drinking — and it is not “the old way” but something some people take up when they are done with life but life is not done with them yet. It seems almost like a new way these days. I only heard of it recently and I don’t think it’s something the older members of my family knew about. My stepfather George wanted to end his life after he moved into assisted living. Still with his wits about him, he had lost vision, mobility, and couldn’t care for himself. He had to live apart from my mother, who could no longer care for him. I wonder had he known about VSED, is it something he would have wanted to pursue?
Choosing a planned passing
Choosing death is on my mind this weekend because I’ve just finished the book Fight to the Death: The Human Stories Shaping America’s MAID Debate by Paul Brand. I’m interested in how people can manage their passing away instead of passively waiting for death to come to them.
I learned so much from the book, and it made me more aware of the harder questions in medical assistance in dying, and in voluntarily choosing death: what about for mental illness? for disability? for young people? for people who don’t have terminal disease? people with dementia?
I’m particularly interested in the question of advance directives for people who are beginning to become demented. Can the advance directives actually be enforced? Brand told the story of one woman who had an advance directive indicating she wanted to be euthanized once she had lost certain functioning. But when the time came, she no longer understood what was going on, and fought the injection of life-ending drugs.
In Colorado, to qualify for medical aid-in-dying medication, you must be a Colorado resident at least 18 years out, have a terminal illness with a prognosis of six months or less to live, possess the mental capacity to make your own health care decisions, and be capable of self-administering and ingesting medication. If you are diagnosed with Alzheimer’s, this isn’t going to help you, because by the time you have six months to live (difficult anyway to gauge with Alzheimer’s) you won’t have the capacity to make your own decisions or administer the medication.
So what are the alternatives? I judge that I have an 80% chance of seeing dementia at the end of my life versus being taken out by something else like cancer, which is more suited to addressing with MAID, once one reaches a near-terminal state.
Choosing VSED would have to happen before I had lost much of my cognitive capacity. But I think I’m ok with that, of course depending on the exact situation. Alternatively, I could put in my advance directive that once I had lost certain functions (e.g., once I couldn’t feed myself), ask that I not be fed or given anything to drink. This would likely require that I not be in institutional care and that I have one of my children guide the process and deal with the guilt of withholding comfort from me when I didn’t understand what was going on.
Ultimately, to me, that seems untenable. So I would probably choose to exit earlier, with a potential loss of some good life, instead of later.
Ideally I’ll be like both of my grandmothers, one of whom had dementia only in the last couple years of her life, and passed away after a fall that broke her hip, and the other of whom who maintained cognitive function until the end, and then died in her sleep.
However, if I instead follow the pathways of my two aunts, one of which started to decline in her late sixties and died in her early seventies of dementia, the other of whom started to decline in her seventies, and died in her early eighties after years of institutional care, I will need to take action early. This is sometimes known as pre-emptive VSED, as described in this article about VSED advance directives.
Having a choice
What matters the most is not what I end up doing, should I start to lose cognitive function, but rather knowing that I have choices and I have some level of control in being able to avoid a long period of memory care where I don’t know what’s going on and I can’t care for myself.
When people have terminal diagnoses, the option of being able to choose when to end their life can make them feel more optimistic. In Fight to the Death, Brand shares the story of Jeremy Boal, diagnosed with ALS at age 56 which forced him to retire from his work as a physician. Brand quotes Boal on assisted dying:
When I got my diagnosis, I went into a profound depression…. I was just racked with grief and fear and dread, and it took me a while to get my head screwed back on and accept it. By far the biggest reason why I was able to move back to the sunny side of the street was because I knew I could access assisted dying. I didn’t have to worry that this would get out of control, that I would be locked in at the mercy of this disease. I could eventually decide that my suffering was enough.
Those who confront dementia do not have the luxury of eventually deciding their suffering is enough. They must choose ahead of time, not knowing how soon they will lose function or how many days or months or years of good life they are giving up by preemptively saying goodbye.
When to choose pre-emptive VSED?
The Global Deterioration Scale, designed primarily for characterizing Alzheimer’s disease progression, uses seven distinct stages from no cognitive decline to very severe cognitive decline. You would need to choose VSED before becoming so forgetful and unable to do complex tasks that you couldn’t remember you were doing it, or manage the discomfort and refusal involved. This is around Stage 3 of the seven stage model: mild cognitive decline, which can last two to four years.
Beyond that, you can live three to eight more years, if you have Alzheimer’s, and some people can survive up to ten or more years, especially with good care (making good care something paradoxically questionable). Those with vascular dementia or Lewy body dementia may not live as long. The older you are, the more compressed the timeline tends to be. And women tend to live roughly 20% longer with the disease than men.
There are emerging treatments for Alzheimer’s, but so far none provides a cure. Perhaps by the time I face dementia — if I face dementia — the treatments will be more effective.
Planning for the week ahead
Last week I welcomed a new foster dog, Paige. This week she’ll need to go to the vet to get spayed, and will come home in a cone. She’s such a sweet and smart dog. I know she’ll get adopted quickly.
Other than that, it’s just the usual: dog walking, swimming laps and doing cardio machines at the gym, managing my flow allocation and options trading activities, hanging out with family and friends.
Having enjoyed the Olav Hauge poem so much, and more generally Devin Kelly’s discussion of poetry, I wonder if I might like to write some myself?