John’s story was recorded in April 2020, amid the ongoing COVID-19 coronavirus pandemic:
In November of 2017, every priority in my life shifted. My husband, Dan Winter, came home and told me, “I’ve been diagnosed with early onset dementia.”
Over a few years leading up to Dan’s diagnosis, I had noticed in Dan some memory loss and some repetition of questions, but I assumed it was the normal changes people in our age group go through. Then his diagnosis came. I instantly reflected on those changes and everything fit into a much more serious context.
The importance of living authentically and openly is something that we continually inspire each other to do. One of the lessons I learned early on after being diagnosed HIV positive in 1985 was that silence means the death of individuals, relationships, of many important things. Shortly after my HIV diagnosis, I started working with the speakers bureau at two nonprofits and we spoke to thousands of people openly and honestly about living with HIV. At that time, our challenge was just to get people to not be afraid of being in a room where HIV was being discussed. That’s not quite the problem with dementia, but still there is shame, that shouldn’t exist, that exists widely in the community.
I know how lucky I am that Dan has chosen to deal with this diagnosis publicly. I’ve seen the struggle that people go through when they are forced by their partners or family members to keep secret the diagnosis of dementia—creating tension amidst greater chaos. As hard as it is to have a disease like this, the burden of secrecy, makes it harder for everyone involved. It’s a terrible problem within the dementia caregiver community—when friends and family observe changes in a loved one because they can recognize the signs and symptoms of dementia, yet everyone feels embarrassed that they’re noticing something they’re not supposed to know.
Watching how Dan has chosen to deal with this with friends and family, how he has chosen to work with Compassion & Choices, and his willingness to remain in the present inspire me. It’s incredibly powerful to live with somebody dealing with dementia and end of life in such a generous manner.
Dan has very personal experience with Alzheimer’s. His father died after living with Alzheimer’s for 13 years; at the end, he didn’t know who he was, who anyone was. His father completely lost all his personhood, all that made him him. As a result of that experience, Dan has taken the lead in getting our lives as cleaned up as possible—finances, wills, and advance directives. Dan is very clear that he is unwilling to miss his opportunity to control his end-of-life journey. If he waits too long, he will become his father and that’s what he wants to avoid.
The reality of illness and death was introduced to me at a very young age. My dad was a physician and my mother was a nurse—conversations dealing with illness and death were dinner conversations growing up. Many years later, when my mom was diagnosed with metastasized breast cancer and transient ischemic attacks within weeks of each diagnosis, my mom and dad sought to control her dying process. They set out a plan to under-treat her cancer so that she would die of cancer before her brain was significantly affected. Unfortunately, the cancer treatment was more effective than they had hoped. While she could still make the decision, she chose to stop treatment, and in time, voluntarily stopped eating and drinking to avoid a prolonged and painful death.
Dan fully intends to end his life on his own terms. At some point, I will be living without Dan, sooner than later. I don’t want to be without him, but as his spouse and caregiver, I fully support his plans. Having a doctor that understands what matters most to Dan, not just one who is clinically skilled, is also important. Dan has been upfront about his Alzheimer’s diagnosis and end-of-life plans with his primary care physician who respects the decisions Dan has made.
There have been changes that Dan and I have both had to adapt to since his diagnosis. I can be a control freak and I’ve had to fight my urge to help Dan when I see him struggle. Rather than try to do things for him every time I see him forget where he is in the process of doing something, I try to let him figure his way out of it, in the hopes that he has a greater sense of control of his life than if I was trying to micromanage all those little things.
It’s also been frustrating for Dan that he is not able to express himself as fully as he used to be able to. Before 4 or 5 p.m. in the afternoon, he enjoys participating in conversation with one or two people, startlingly so at times. But when you get a group of four, where there can be two different conversations going, the distraction of separate conversation is very difficult for him to focus on whatever conversation he is in. Going to restaurants and larger social gatherings leaves him feeling exhausted, so we do less socializing on that scale. His keen intellect is such a big part of who is that those compromises are tough.
Recently, Dan and I went through Compassion & Choices’ Dementia Values and Priorities Tool with Dan’s ex-wife, who is one of his best friends, and their three adult children. It was wonderful to see them all embrace Dan’s values and plans for his future. Early on in our relationship, we got to know one another’s approach to life, our sensibilities and values. One of the advantages of being older when we met was that we had been around the block a few times so we knew what was most important to us. Conversations about end-of-life planning and priorities, fortunately, happened quite naturally.
We all are being reshaped by the pandemic we are now living through. In addition to this new overwhelming experience, I’m being shaped by yet another experience that I wish had never happened. I don’t want Dan to have this experience with Alzheimer’s, but I’m trying to take it all in and make use of it, to learn from it, and, by sharing my story, have this experience be of use to others.
As trite as it may sound, Dan’s diagnosis has taught me that all that matters is now. Today. I could live in the future and live in fear of what I can imagine, or I can live in the present. I get to be with this man who I love and who loves me. We enjoy a wonderful life surrounded by loving friends and family, and of course, our beautiful dog, Friday, who is a love factory.
For now, two and a half years in, it’s been terrific, as absurd as that sounds. It seems there is always more to learn about love.
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.