Swenson: Why I walk to end Alzheimer’s disease
Editor’s note: The Vail Daily is running testimonials leading up to the Sept. 26 Walk to End Alzheimer’s.
“Let me show you the new sheets I got dad,” mom said.
I followed her into the laundry room where she had washed two sets of new sheets to soften them up. “They’ll match his comforter and also his new headboard.” I just nodded and smiled and squinted my eyes so she couldn’t see my tears welling up.
While many are buying new bedding this fall for kids going to college, my mom was buying these items for my dad’s new room at a memory care facility in a nursing home for Alzheimer’s patients.
It was time. My mom had cared for my dad for years and it had progressed to the point that, as heartbreaking as it is, it was better for her and my dad to place him in a facility with professional care. I flew back home for the week to help them with this major life change after 56 years of marriage.
Here are the latest facts and figures from the Alzheimer’s Association:
- Over 5 million Americans are living with Alzheimer’s disease
- Alzheimer’s disease is the sixth-leading cause of death in the United States and is the only one without prevention, cure or treatment
- 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias
- These caregivers provided an estimated 18.6 billion hours valued at nearly $244 billion
“We’ll make pudding for dessert,” mom said. We were fixing supper for what we figured would be his last meal at their home, a house they had designed and built together after years on the family farm. They’d maybe been in the home just over a dozen years and thought they’d both be there together much longer. My dad would always say how much he loved how the house had turned out and how they had designed it “just right.”
We ate out on the deck on an unusually non-humid night in July in North Dakota. My dad loved nature and even with advanced Alzheimer’s disease he’d spot things in the trees, horizon line or sky before we could. I would study his eyes and his reactions, just wondering how this Alzheimer’s-afflicted mind worked these days.
In 2020, Alzheimer’s and other dementias will cost the nation $305 billon. By 2050 these costs could rise as high as $1.1 trillion. 50% of primary care physicians do not believe the medical profession is ready for the growing number of people with Alzheimer’s or other dementias. I read these staggering stats and just hope that I don’t ever get this disease.
Stoic. Norwegian. Lutheran. North Dakotan. That’s how I’d describe my family. Whatever happens, you deal with it and it’s “fine.” But, after dinner as we were washing up the dishes and dad was in our line of sight on the deck from the kitchen window (we had to keep an eye on him all the time now), my mom started to cry. I’ve rarely seen her cry.
“What if we aren’t doing the right thing,” she said, referring to the decision to place him into a nursing home. I gave her a hug and said, “It’s time, mom, and everyone I’ve been talking to says that this part is the hardest, just making that decision and wondering if the time is right, but it really is going to be the best for you and dad.”
We went to bed with heavy hearts that night, so heavy your heart hurts. But, through the pain and sadness I felt for the lifestyle I knew for my dad was gone too soon, I also saw so much love. From all of the acts of love during their marriage, all the caregiving my mom has done the last several years, down to the recent buying and washing of the new sheets “so they’d be softer for him” and making his favorite dessert on his last night home, I saw the acts of love. I was witnessing a love story that had been going on for almost six decades.
I decided to cling to that power of love. We can’t change the diagnosis, but we can love our family and support them. We can replace sadness with love, worry with love, impatience with love, anger with love, loneliness with love.
During this time, I have leaned on the support of the Alzheimer’s Association. I’ve called the Help Line, viewed posts on their chat rooms and blogs and gone to educational events they’ve hosted. I’ve also volunteered time and raised money for a cure and treatments to spare other families or even myself from going through this disease.
We are walking on Sept. 26 to help fight Alzheimer’s disease. The annual Walk to End Alzheimer’s Vail Valley fundraising event will look different this year due to COVID-19 restrictions. Instead of walking as a group, we are encouraging you to get your family or a small group out for a walk or hike wherever you are.
Money raised from this event helps fund research, educational programs, helplines and other resources. Please join us as we strive for a world without Alzheimer’s disease. If you would like to join my team, donate or learn more about the event please visit the website below:
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