Tell the truth: you’ve thought about what you would do if you were ever diagnosed with dementia, haven’t you?
You’re not alone.
The topic came up again this past week when Sally and I watched a PBS NOVA episode about long-term Alzheimer’s research being done at the University of Wisconsin. One of the cases presented was a 73-year old woman with end stage dementia. She couldn’t talk or feed herself and her muscles constantly twitched and cramped. The story line followed her husband and children as they tried their best to make her last days comfortable.
“Don’t ever let me get like that…”
Sally didn’t need to finish the thought. We’ve talked about it before (S1E13), but we’ve never really come up with a plan.
This week, thanks to a new book written by Amy Bloom titled In Love, I learned that there is a path forward. The book is a memoir about her husband’s decision to suicide after being diagnosed with Alzheimer’s.
The path leads to Zurich, Switzerland, where there is a non-profit company, Dignitas, that will work with you. What makes Switzerland’s approach different from assisted suicide available in America is the conditions under which you are eligible to be helped.
In the 10 states in the U.S. that have some form of assisted suicide, the eligibility requirements are intentionally excruciatingly narrow. You’ll need to be diagnosed with a terminal illness with less than 6 months to live AND you’ll have to have all your faculties about you, be able to rationally discuss your decision, prove you are not depressed, and be physically able to self-administer your own lethal dose when the time comes.
That pretty much rules out anyone with dementia. If you still have your wits about you, no doctor will certify that you are within 6 months of death.
Clearly, the notion of a right to death with dignity for those with dementia has not yet reached our shores.
In Switzerland, though, they’ve eased the restrictions by eliminating the 6-month life expectancy condition. You still have to be diagnosed with a terminal illness (which dementia is) and you still have to be mentally and physically competent to implement the plan (i.e., drink the sodium pentobarbital solution) on your own. That’s why they call it ‘attended’ suicide over there instead of ‘assisted.’ The final act must be yours and yours alone.
Reading about that process, though, shook up my thinking. In my previous imaginings (it seems wrong to call them ‘fantasies’) about a post-diagnosis suicide, I envisioned milking my good days for as long as I could and then pulling the plug when I stopped being me (however I might define that). From another point of view, if I were the one to assist Sally after her diagnosis, the timing would be when she was no longer herself and had lost the ability to marvel at the world of children and ask questions about everything.
In either case, the timing would be tricky, as there is no paper-and-pencil test one can administer to determine that the time has come. You just know it. At that moment, it should be a pretty clear moral choice, especially if you are (as I am) unencumbered by any religious prohibitions against ending a life in this situation.
In Amy Bloom’s case, however, her husband Brian makes the decision to suicide almost immediately after learning his diagnosis. In hindsight, it is clear that he has been symptomatic for several years, but he is still quite capable of enjoying a good meal at a restaurant, traveling and fishing, and he is cognitively strong enough to meet the criteria for mental competence.
That’s pretty brave. Although his journey on the road to nowhere is clear, he is still very much Brian, both to himself and to Amy. There is no waiting, there is no ‘making sure,’ there is no milking the last drop of pleasure from life.
It’s going to take me a little while to wrap my head around that.