Last fall, a dear friend’s aunt died of Alzheimer’s. The event prompted many conversations about end-of-life care, both for her aunt and for ourselves. I have a living will, but I concluded I needed to go further.
Thanks to a voter initiative approved last fall, Washington State allows assisted suicide. It’s a good start. But it won’t help me deal with my new nightmare: I can’t recognize my loved ones. I can’t tell a story. I can’t read. My inability to care for my basic needs fails to register in my brain. Food has no appeal, and I’m unable to feed myself.
But from the outside, I look healthy.
I wouldn’t want to live that way. I wouldn’t want to die that way, without the ability to connect with anyone outside myself, or with myself for that matter. I wouldn’t want to burden my family that way.
And I wouldn’t want to incur the costs: $7,000 to $10,000 a month for an assisted living facility or a nursing home. I’d rather spend the money putting my nephews through college.
At my nightmare stage in the progression of Alzheimer’s, life could end in a few months or, far worse, in a few years. The rate of decline doesn’t follow a predictable path. But however long it would take, I think it would be too long.
And I wouldn’t qualify for assisted suicide. I can say now that I would want that option, but the rules say I have to be of sound mind at the same time two doctors sign off on the prognosis of six months or less to live. I have to confirm my decision two weeks later. What Alzheimer’s patient would be viewed as “of sound mind?”
I’d also have to give myself the drugs. What Alzheimer’s patient would remember what the drugs were for?
There’s an option, albeit imperfect. I have a healthcare directive that states my wishes in the event I fall into a persistent vegetative state or suffer brain death. I’ve also granted durable power of attorney for healthcare to a friend who can make decisions for me if I’m unable to do so.
In the case of brain death, I’m a plug-puller. If there’s no chance of bringing me back, pull the plug.
Dementia is different. While the brain disintegrates, the body seems fine. My friend’s aunt wasn’t on life support, but her brain was gone. She was conscious, but she was gone. Is that the same as brain death? We know there’s no way back. No cure. No way to reverse the slide.
To guide my decision-maker, I had to modify my directive. Here’s what I settled on:
“If I am diagnosed in writing by two doctors to be suffering from an irreversible form of dementia, Alzheimer’s disease or other loss of brain function that has rendered me unable to control my bodily functions, unable to care for myself, and unable to recognize my situation and carry on a coherent conversation, I direct that I be given no further treatment that might delay my death, such as: feeding or hydration; antibiotics or other treatments to deal with infection; radiation or chemotherapy; or surgery to repair injuries. The only allowable treatment shall be pain medication or drugs intended to manage my behavior if I become a danger to others.”
Death would most likely come from dehydration, in a few days to two weeks, and relatively painlessly.
It seems like the right thing to do. We all benefit. If I’m gone, then let me go.
Mark Nassutti is a writer living in Kirkland.