Don Desonier became an Alzheimer’s Association volunteer after losing his wife, Nancy, to early-onset dementia. This year, he is participating in The Longest Day® in her honor.
A woman of grace, beauty and limitless love
Don’s wife, Nancy, was a professional flute performer and teacher, having graduated from UCLA with a degree in flute performance. Little did she know that her talent and love for the flute would one day lead her to Don, her future husband.
They were both involved in a production of South Pacific at the Village Theater in Issaquah: she was playing the flute in the orchestra and Don was part of the cast.
“I remember it like it was yesterday,” says Don. “It was June 9, 1983. She was recovering from a ski accident and was on crutches. I helped her put a watermelon in the back of her car after a potluck. We were married four years later.”
By that time, Nancy had gone back to school to study interior design and went on to start her own design firm in 1987. She found great success and fulfillment in her work, winning the MAME Award for Custom Home of the Year and being featured on two HGTV shows. Her daughter, Kirsten, became her business partner in 1995 and is still leading the design firm today.
Their journey with dementia
In 2007, Kirsten became concerned when she started noticing changes in her mother’s focus and performance at work. After a series of doctor’s visits, Nancy was diagnosed with mild cognitive impairment in January 2008. An MRI revealed that she had been experiencing mini-strokes, which are often a sign of vascular dementia.
“At first, we weren’t telling anyone about Nancy’s diagnosis,” says Don. “In the early stages, I would say to her, ‘You have a ton of friends who love you and care about you. Why don’t you share this with them?’ She was embarrassed, frightened and afraid.”
Later that year, Don joined an Alzheimer’s Association caregiver support group. “I came into the first meeting with a list of questions,” he recalls. “I wanted to know how I could get her to talk about what was happening, and they told me, ‘That’s your job.’”
After attending the support group, Don found it easier to talk about Nancy’s diagnosis. He started sharing it with family and friends. He says, “When I told them what was happening, they had already suspected something was going on.”
With Nancy’s diagnosis out in the open, Don says their relationship began to change. “I pivoted from simply being Nancy’s husband to being her tireless and loving caregiver. It changed my relationship with her and the amount of empathy I had for her. I accepted that this was my role and it was what I was meant to do.”
Eventually, Don started working from home so he could be closer to her during the day. He was her primary caregiver for two-and-half years until she moved into memory care in 2010. Nancy passed away two years later on July 4, 2012. For Don, Nancy’s death on Independence Day was serendipitous. “She was finally free from this terrible disease,” he says.
Supporting other caregivers
Don continued to attend the caregiver support group for over a year after Nancy’s death — and at some point realized he might be able to help others going through the same thing. He started a blog about dementia caregiving, completed a certificate program in gerontology at the University of Washington and went on to become a Certified Senior Advisor®.
Then, in 2016, he was approached by the Alzheimer’s Association about the possibility of becoming a support group facilitator. He decided to volunteer, but with one condition: He wanted to start a caregiver support group just for men.
In his studies, Don wrote a research paper about men as caregivers and how their experience is different from women caregivers.
“Men are often overlooked as caregivers. They tend to be problem solvers and take a much different approach to caregiving,” says Don. “They are focused on fixing, planning, organizing — but what’s missing is getting support for themselves, sharing feelings, and letting go of their need to correct the person or manage the situation.” Don learned the value of this when he was caring for Nancy. “I realized it was fallible to think I could manage it and figure it out all on my own.”
The support group, known as the “Men’s Coffee Group,” started in June 2016. It started out small with just a few participants and has grown to be a vibrant group of regular attendees. Don says, “It’s wonderful. The guys can just talk to each other and be vulnerable — but they can also laugh together and appreciate the humor in some of the situations they find themselves in.”
As for continuing to be a support group facilitator, Don says, “This is my journey in honoring Nancy.”
Playing pickleball for The Longest Day
When Don learned about The Longest Day, he saw an opportunity to raise funds and awareness for the Alzheimer’s Association by doing something he loves: playing pickleball!
Pickleball was founded on Bainbridge Island in the 1960s and recently became the official sport of Washington State. “It used to be considered an ‘old person’s sport,’ but not anymore,” explains Don. “It’s now one of the fastest-growing sports in the country.”
Don first played pickleball at NEST (Northeast Seattle Together), another nonprofit organization he’s involved with. “NEST is a virtual village,” explains Don. “It was the perfect place to host a pickleball event for The Longest Day.”
NEST supports older adults to be active, engaged and independent. It is a community that connects our members with each other and with resources to age successfully in the place they call home. It is also where the Men’s Coffee Group is held when meetings are in person.
Together with his friend, Paul Kasprzyk, he started the NEST Pickle Ball Team. The two are now planning the pickleball event together. While Don is playing in honor Nancy, Paul also has a reason for getting involved.
“When my wife Sheila moved into a memory care unit, I reached out to the Alzheimer’s Association for advice. Their monthly support groups helped me solve many practical problems common to many caregivers and gave me much-needed moral support,” says Paul. “I am proud to be involved with The Longest Day — and as a fan of pickleball, I am looking forward to participating in a way that also promotes this great sport in our community.”
The event is currently scheduled to take place in mid-July. While details are still in the works, Don says, “It will be a day of pickleball activities for people of all ages and abilities. There will be something for everyone.”
Join Don and Paul for The Longest Day! Do something you love to honor the people you love. Learn more, choose your activity and register today at alz.org/thelongestday.
6 thoughts on “My Journey in Honoring Nancy: The Longest Day”
Being able to speak honestly with yourself about a diagnosis of dementia is such an important and healthy practice. I am so glad Don spoke of that aspect of the journey.
I play Pickleball every day in Seattle Washington. What a great way to honor Nancy. I have a husband who is in a home for Alzheimer’s and I would love to be part of this. Thank you,
Hello Susan, thank you so much for reading this great story and reaching out. Please contact me at email@example.com and we can share how you can take part.
Don, it has been a true pleasure meeting you and watching you and Paul develop your Pickleball tournament! More importantly, I love the way you are making sure that the tournament is a way for the Alzheimer’s Association reach out to the community and let people know about the support that is available – like you Men’s Coffee Group. You are truly honoring Nancy. Thank you for sharing your story!
Thank you Janet for those kind words. It’s wonderful to see how the pickleball tournament is shaping up! I am grateful to a able to honor Nancy, and by extension recognize the tireless efforts of caregivers of loved ones with dementia.