Dementia is relentless and difficult to ignore. It is as pervasive as air and as persistent as the sunrise. It grabs and shakes its targets without warning or mercy, disrupting everyday life despite all attempts to keep it at bay.
I have served on a couple of juries – once as the foreman – and enjoyed the intellectual stimulation and gravity of the experiences. But recently when I received a summons to duty I had to decline. “Dementia, unable to serve,” I wrote on the form, feeling a little sad.
Days later, during an eye exam, the doctor asked about an old, “dangerous-looking” scar on my left eyeball, but I couldn’t tell him how it got there.
Then, shortly afterward at my birthday celebration, a close friend told me that his own birthday was only days away. As he left a few hours later he again mentioned that his birthday was coming up soon. “Really?” I replied, my short-term memory failing once again. “When is it?”
Learning to live with dementia, with lots of help from family and friends, has been an adventure.
The best medicine seems to be to go with the flow while dementia steals parts of your life. For me, the latest theft has been the ability to enjoy reading books because I can’t always recall what I have read a day earlier. I used to read a book every week to 10 days, and often I would read two at the same time. While it’s now more of a chore to read, the upside is that I can re-read great books that have been gathering dust for decades as if I have never read them.
But there’s no upside to fretting over the problem. Sometimes dementia actually provides laughable moments, like when the cellphone you have been frantically searching for rings in your pocket.
“My sense of humor is my saving grace,” one reader wrote. “These days I never run out of opportunities to laugh at myself – my forgetting this, my overlooking that, this friend’s name, and who was I supposed to call today. Everyday it’s one occasion of silly laughter after another! I am so thankful for my goofy sense of humor.”
A reader in South Carolina observed, “If my wife and I couldn’t laugh at her forgetfulness and confusion I think we would be existing in a world of hurt. There are times when we both just burst out in laughter.”
That beats ignoring the problem or, worse yet, refusing to acknowledge that it exists. Although scientists haven’t found a cure for dementia, there are medications and treatments to slow its progression. But many readers complain that their loved ones won’t seek help despite clear signs of cognitive difficulties.
“He just won’t get help or even admit he has a problem,” wrote a frustrated wife. “I try to be patient, but it’s hard knowing there might be help out there that he won’t get. He’s just having a lot of trouble letting go of who he used to be, but we all are getting older and changing. That’s just a part of life.”
Others will cling to any reason not to seek help. One woman whose mother had Alzheimer’s worries about her own genetic proclivity for the disease. “Every forgotten word or thought I have is a leap to wonder if this is the beginning of dementia for myself,” she wrote. She decided to be genetically tested “to better enable me to have everything in order, prepare my kids, etc.” Then one day she heard a geneticist on the radio “who stated he would not encourage others to be tested (for Alzheimer’s) because then we live to that level. That changed my mind.”
I respectfully but emphatically disagree with the geneticist. Knowing and acknowledging my problem hasn’t led me to live my life based on what might be tomorrow rather than what is today. If anything, becoming more aware of the problem has created a greater appreciation for memories that remain, and for life itself.
About that scar on my eye, my wife Barbara told me it happened when I didn’t wear goggles during a handyman project and a piece of steel got embedded there.
And I remembered to call my friend on his birthday.
Kent Pollock is a retired journalist and journalism professor. He was formerly the assistant managing editor of The Sacramento Bee and editor of the Anchorage Daily News. Please share your perspectives, insights and comments with him at firstname.lastname@example.org.