An early role model for his own life of volunteerism and activism, Dan Winter’s father lived with dementia for 13 years before dying. Four years later, at age 59, Dan was diagnosed with early onset Alzheimer’s. “It was a long, ugly struggle,” Dan says of his father’s decline. “I looked at my dad the last time I saw him and said, ‘This is not going to happen to me.’ If he had seen what was happening to him, he would have been furious, absolutely horrified. It was hell. It was hell on him and hell on us. It was hell on my mother. She gave up everything in order to care for him. I have no interest in living my life to that point.”
The father of three grown children, Dan moved to Oregon from Missouri in 2011, partly inspired by the state’s Death With Dignity Act. “Then I get one of the few diseases it doesn’t cover,” he says, “so I wondered how to make sure I get what I want.” A connection of Dan’s at Compassion & Choices through his service on the American Civil Liberties Union (ACLU) board of directors alerted him to the organization’s dementia tools, which were just released this month.
“With help from the tools, I can draw some lines in the sand relative to how I want the rest of my life to play out as my symptoms develop. The tools compel me and my family to do what we’ve not been anxious to do, which is to sit down together and consider the circumstances I’m not willing to live with,” he explains. “We can now confront my options with less fear and confusion. The tools make it possible to include my family in how I think of my future, in how I want to live from here on. The process gives me a chance to make choices through a lens of love so I can put a frame of comfort and reason around the loss. It actually allows me to reclaim some of the agency that this insidious disease has taken from me.”
Find more information about and get access to these new free tools — the Dementia Values & Priorities Tool and the Dementia Decoder — here.
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