Dan speaking at Compassion & Choices Oregon’s 2019 Fall Fundraising Event:
My story is not unique. Everyone knows about Alzheimer’s and related dementias. It’s a truly awful disease – unforgiving, relentless, and ubiquitous.
Having Alzheimer’s disease means that, every day, you are forced to accept some degree of loss. The things that make you human are under attack.
At age 70, my super-independent, always-on-the-go dad got his Alzheimer’s diagnosis – and he died 13 years later.
The last day that I saw my father was several months before he died. We sat silently together – he couldn’t speak nor meet my eye nor understand the simplest words. He didn’t know who I was; he didn’t know who anyone was. He didn’t know who he was. It was advanced stage Alzheimer’s, and it was brutal.
It occurred to me on that day that dad was devoid of his humanity, his rabid individuality, his personhood. His distinct sense of self had slipped away. To me, the only thing left that defined him as a person was his failing body. There was no empathy, no intelligence, no humor, no self-awareness, no yearning, no anxiety, no love. There was no “HIM.” It was lights out.
And then I got mad as hell. The tears in my eyes were not sadness, they were from anger. Had dad been able to see himself on the day of my last visit, he would have been horrified. It was then that I vowed to myself that, if I ever got a terminal diagnosis, I would work to determine the manner and timing of my own death. I began to think rationally about my own mortality and how I wanted to live and how I wanted to die.
In 2011, I decided to move to Oregon. I could have moved anywhere in the country, but I chose Oregon, in part because of their Death with Dignity Act. My kids thought that a bit weird, but ultimately our conversations about my move to Oregon sparked conversations about my views on end of life.
All that talk got startlingly real when, about two years ago, at age 59, I got my own dementia diagnosis. Early-stage, they call it. Likely to become full-blown Alzheimer’s, they said.
Immediately, I began thinking about my end-of-life preferences. Things had to be different than my dad’s experiences. To honor him, I told myself, I wasn’t going to die like he did – without agency, without choice, without the capacity to feel love.
Now, I am trying to be upfront with friends and family about the intentional life I want to lead from here on. I’m also upfront about the death I want and the death I don’t want. I want to outsmart Alzheimer’s and deny it the ability to erase my personhood during my last lap.
After my diagnosis, I addressed my biggest fear about this unpredictable and stealthy disease. As I said to my loved ones: “I’m not scared to die. But, I am scared to live – to the bitter end – with this insidious disease that will steal my capacity to do the things that make me human.”
I let my driver’s license expire this year because I don’t want my kids and my amazingly supportive husband to have to force me to do so as my disease advances – when I won’t be thinking straight about the risks that I present to others. The new Compassion & Choices Dementia Values & Priorities Tool already helps me face practical questions like that. With the new Tools from Compassion & Choices, I am developing the emotional skills to address my end-of-life options. There is nothing else out there like this. To me, it’s a godsend. I now have choices that I didn’t know I had.
Resources for caregivers and those living with dementia:
This tool walks individuals through the common stages of dementia and helps them to identify when, if ever, their goal for care may change from “do everything possible” to “allow for my natural death.” The tool allows users to create a Dementia Healthcare Directive to add to a standard advance directive, which empowers healthcare proxies to implement critical, informed decisions — guilt-free — on a patient’s behalf.
This tool allows users to indicate the current status of their dementia diagnosis, specify what they hope to learn and accomplish from an upcoming clinical appointment, and customize that experience from a list of helpful questions. Responses can then be printed or emailed to a provider or family member to ensure that these high-stakes medical appointments allow for the important discussions that everybody in the room needs to be part of.