The large cardboard sign hanging above our garage door caught my eye: “All Aboard! Wilson’s Birthday Express,” declares a smiling face on the front of a locomotive.
Where did that come from, I wondered.
Well, as it turns out, I made the sign six years ago to display on the side of a small train my wife Barbara and I rented to carry our grandson and his friends around the neighborhood. I also baked cakes for the occasion in molds that formed an engine and several train cars. There are pictures to prove it, but the memory no longer exists.
Dementia has stolen many memories from me, making me feel momentarily gloomy after each discovery, especially when it represents an otherwise happy family occasion or celebration. I don’t recall baking a bowling-themed cake for another birthday or co-hosting a barbecue for our 90-year-old neighbor several years ago featuring a driveway-wide “Happy Birthday” banner. Both events are now interesting stories about memory holes and my inability to make a mental connection with the event.
My greatest concern since being diagnosed with cognitive dementia about three years ago is that these memory voids will grow, robbing me of what once was while leaving me with less ability to cope with everyday life. These are thoughts I try to ignore, with little success.
“You can’t start the next chapter if you keep reading the last,” read a recent Facebook post promoting forward motion along life’s highway. The message triggered my realization that those of us coping with dementia don’t necessarily share the same forward view.
While I root for my future, I’d happily remain mired in the past since doctors say my cognitive ability will continue to fade if there are no major medical breakthroughs to transform the dementia landscape.
Don’t get me wrong. I feel blessed to have a future, regardless of mental challenges. I suspect all older people have similar views about slowing down life’s processes. While my current existence is riddled with near-constant reminders of my dementia troubles, a dysfunctional future is still only a distant nightmare.
And hearing from readers afflicted with dementia or those caring for someone with the malady reinforces my view that I am truly fortunate to have been diagnosed and medicated early in hopes of slowing my regression. Each month, reader responses highlight the spread of dementia’s impact far beyond the patient.
One reader shared the mixed emotions she and her husband have regarding her mother’s advancing dementia and its associated expanding care needs. “While we count the positives that allow us to meet our challenges, we look forward to a day we may be free of it all, adding to the sadness and guilt we feel for feeling this way,” she wrote.
Another woman wrote about helping her mother get her affairs in order before her dementia becomes debilitating. She and her husband helped sell her mother’s home; liquidated her possessions that wouldn’t fit in a smaller home; checked with her to see if she wanted any changes in her trust while she was still thinking relatively clearly; hired a caregiver; talked with an investment advisor about the parameters of long-term care insurance and how to manage mom’s investments; signed on to her bank accounts and started paying her bills; and completed various other everyday chores.
“Going through this process has been difficult, painful, frustrating, challenging and stressful,” the reader wrote. “I am torn between my mom’s rights as a grown woman who raised three children and responsibly ran her own life for many years, and the reality of a disease that has essentially rendered her a child in need of care and assistance.”
Exposure to dementia can also cause fear. “His death was a relief, but it was bittersweet,” wrote a widow. “Now I see signs of similar traits in myself. I don't have anyone in my family close by me to be my advocate as I was for my husband.”
The ailment’s reach isn’t confined to relatives and friends. A reader wrote about leaving his apartment after his landlady, with Alzheimer’s disease, continually sent police to his place because she thought she heard violent arguments and fighting inside, although he lived alone and had no visitors before or when police arrived. After he departed, he learned that she continued calling police about noises in the empty apartment.
“It's really sad because, when I first moved in, she and I got along great,” the reader wrote. “I'd often visit her just to talk … but over the last year I lived there, her cognition declined rapidly to the point where she had made me a co-victim of her disease.”
Another woman wrote about adjusting to her husband’s changes. “I’m learning about what John can tolerate and what he can’t as his personality changes and he becomes more sensitive to loud and busy places like restaurants. The new Golden 1 arena was too much — too big, too steep (upstairs), too many people, too loud, so we had to let go of our shared Kings tickets.”
Perhaps the saddest reader responses come from friends and relatives of people who refuse to acknowledge their dementia. One woman wrote that the man she married 54 years ago has changed dramatically, but she can’t even get him to admit he has a problem. So convincing him to seek help has been impossible. “He's in denial, and most days I let him convince me that I'm the one imagining things. I so want to be wrong,” she wrote. “He will blame things on medication or say ‘I don't have to remember because I'm retired’ or ‘That's what I have you for’ or ‘I always get to where I'm going.’”
He accuses her of making up memories he doesn’t recall, she wrote. “And sadder still is when he tells stories that are so far from what really happened, it's scary. There is no way to explain it to him because he just gets loud and defensive or just dismisses me. … At least we are reading your articles out loud together and they have opened an avenue of awareness.”
Awareness is a beginning. Diagnosis and medical assistance are logical next steps. And, finally, acknowledging you have the problem is downright liberating.
A few weeks ago, I showed my grandson the birthday train sign in our garage and asked if he remembered it.
“Sure,” he answered quickly. It apparently was a day filled with fun and joy.
That created a wonderful new memory that I can only hope won’t slip away again.
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.