Cheryl, with hat at right, and I enjoyed an outdoor concert in downtown Janesville, Wis., with friends and neighbors in July 2022.
My wife Cheryl’s slow descent into dementia afforded me the chance to plan, contemplate and steel myself for the inevitable.
Many families don’t have that opportunity; instead, death comes without warning.
It isn’t that Cheryl’s death wasn’t sudden, or jarring. The end, on Sunday, Feb. 25, still caught me by surprise.
But Cheryl was diagnosed with mild cognitive disorder and probable Alzheimer’s in 2014. I told her doctor that Cheryl had been having memory problems for five years.
Fearing what lie ahead, I had already been planning. Cheryl failed a neurological test when applying for long-term care insurance, so I convinced her without explanation that we should boost contributions to our retirement accounts. We poured in money as fast as we could while still enjoying life. Cheryl retired in 2011 and took Social Security. Neither of us had a pension, so I continued to dump up to 20 percent of my earnings from The Janesville Gazette into my 401k until I stopped working seven years ago.
I also read a handful of books that helped me better understand dementia and what I might need to cope.
Today when people ask me how I am, my short answer is, “I’m doing okay; thanks for asking.”
I’m being honest.
How can that be, you might ask?
I knew I had to take care of myself. Cheryl was almost eleven years older than me. I was likely to outlive her. But too many primary caregivers let their health suffer while struggling with the 24/7 problems that dementia can cause.
One thing that I knew would benefit me was a large support system. So I cultivated friendships at every step.
Cheryl and I were always social people. We belonged to St. John Vianney Catholic Church. With fellow parishioners, we served for years at the Roosevelt Elementary School Breakfast Club. We worked out at the Janesville Athletic Club. We also joined the Velo Club, a Janesville bicycling group. We supported the Janesville Performing Arts Center and the Janesville Farmers Market. We volunteered at Rotary Botanical Gardens. I developed a network of writers through the Wisconsin Writers Association and a local critique group that I formed. I’ve also been involved in the Rock Trail Coalition and local Ice Age Trail group.
Furthermore, I worked more than 28 years in The Janesville Gazette’s newsroom, and Cheryl served as news clerk for 15 years. Our jobs put us in touch with many people in the community.
Finally, we lived for decades in the same home in a friendly neighborhood on Janesville’s east side.
Through all these connections, we know many people. Our good friends Don and Barb have often attended outdoor concerts with us—now with just me—downtown. They always marvel at the many acquaintances I stop to chat with before, during or after those shows.
My Facebook “friends” number 564.
Once I got that gut-wrenching diagnosis, Cheryl’s neurologist suggested ways to slow her decline: Eat healthy foods, preferably the so-called Mediterranean diet. Get exercise. And socialize.
Cheryl was full Irish, a meat-and-potatoes gal. She also had a stubborn Irish streak, which I found charming in our early years but later proved detrimental to her health. She was only going to eat what she wanted to eat.
Our trips to the athletic club helped until Cheryl refused to go. She said she didn’t need “exercise” anymore. So I sought ways for us to get exercise without calling it that. Our dog walks were one example. So was bicycling. We got exercise by working in our garden. She enjoyed mowing lawn until three years ago. Our trips to the farmers market and our volunteerism at Rotary Gardens not only got us exercise but socialization by interacting with others.
I never tried to hide Cheryl’s memory problems. It’s a disease, not something to be ashamed of. It’s not contagious. Told social interaction was beneficial, I made sure we got plenty.
Recently I was talking to Pam, a neighbor who became a dear friend to Cheryl. She remembered asking Cheryl a couple years ago what we had planned for the day.
“I don’t know, but I’m sure he’s got something planned,” Cheryl said of me.
We were always on the go.
Still, Cheryl was private about her condition. She never wanted to talk about it, and she didn’t want people to know. She was good at hiding it or making believable excuses for her memory lapses.
But in the past five years, if you spent enough time with us, you couldn’t help but detect the problem.
Our neighbors Tim and Marlene bought their home across the street in 2019. Cheryl stopped to introduce herself and our cairn terrier, Molly, when she left for a dog walk.
Cheryl introduced herself again on her way home. Tim and Marlene realized Cheryl had a problem.
This couple have been great. Marlene offered to visit with Cheryl if I had to be away for some reason, such as a series of evening caregiver workshops. Cheryl got nervous when it grew dark. Each time Marlene came over, Cheryl asked if she had given her a tour of our house.
One evening, Marlene got that tour four times.
Cheryl often ran across the street to visit. Marlene came to see Cheryl at Huntington, and I took Cheryl out to meet Marlene for ice cream last summer. Marlene and Tim continue to drop off food treats for me.
To be honest—and I intend to be here—some relatives disappointed me and either couldn’t or wouldn’t do what I hoped they might. It didn’t help that these relatives were all out of town and that some faced their own life struggles.
But Tim and Marlene are among the friends, neighbors and former co-workers who did step up. Here are just a few of the many more examples:
--In the past two years, Mike, a high school classmate of mine, drove 25 miles from Jefferson to help me with house repairs three times. When my hot water heater died during a rummage sale last summer, Mike and his wife invited me to their place for a shower and supper.
--Stan, Cheryl’s classmate and a former co-worker of ours, came to see Cheryl three times in her last two months of life. He bought her a matching scarf and stocking hat when he realized she was always cold. The week she died, he copied pages of their high school yearbooks, and Cheryl was alert enough to appreciate them. On one page, I learned Cheryl was on the student council.
--Former neighbors Josh and Angela—another former co-worker of mine— left two plates of pasta on my doorstep.
--Neighbors Fran and Lisa—whom I don’t know that well—dropped off pasta and cookies.
--When neighbor Kendra learned that Cheryl’s favorite drink was a brandy old-fashioned, she said she would host a neighborhood “old-fashioned” gathering in honor of Cheryl. We toasted to Cheryl just a few weeks ago.
Then there are our dear friends Don—another former co-worker—and his wife, Barb. I had to furnish Cheryl’s room at Huntington Place memory care, and the day before I placed her there, Barb and her sister Chris (yet another former co-worker) took Cheryl to a movie while Don and his brother-in-law Rick, who had a pickup truck, helped me move furnishings and clothing into that room. They even hung photos and made the bed.
Don and Barb joined me in visiting Cheryl a few weeks later. As we left, Don said he came to support me and Cheryl—he had known her since 1967—but that he wouldn’t keep coming because he couldn’t watch her decline. I told him I understood.
But he kept coming. In fact, Don and Barb even came to visit the day before Cheryl died and the day she died.
In the meantime, they’ve invited me not only to supper repeatedly or to just stop over and chat but also to their family Christmas gathering.
These days, I keep a long list of people I need to get back in touch with, people who reached out and wanted to connect, to share a meal or a cup of coffee, to support me and let me talk. Too often, they insist on buying. Sometimes I bounce from a phone call to a visit to yet another call and the day evaporates.
I’m humbled and will be forever grateful by the generosity, care and compassion I’ve witnessed again and again.
There are angels among us.
Your commitment to helping Cheryl to the very end is truly staggering, and a testament to your remarkable character, Greg. I’m glad you pursued the Substack idea. I trust your insights will be of great value to many people. Peace.
So happy you have all these friends, neighbors, former co-workers and other social connections for ongoing support.