“I try to tell my kids that I am a mere shadow of the woman I once was, but so far they still think I’m that other woman.”
The words of that reader reveal another slice of the dementia story, of loved ones who desperately want to cling to the past, rejecting what is while hoping in vain for what once was. They are among the secondary sufferers coping with the empathetic sadness and confusion of watching those they care for lose the ability to remember or think clearly.
“I watched a brilliant, witty, common-sense man wither away,” another reader wrote. “Losing him was the hardest thing I've ever done, because I lost him long before he died.”
Feelings are acute for everyone involved with dementia, and knowing how to navigate the new and evolving landscape can be a struggle.
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A weary wife wrote: “I love him so very much, and I love taking care of him, but also taking care of our home, our finances and our future is overwhelming.”
Thank goodness I’m blessed in marriage to the most lovingly supportive person I have ever known. At my side for 50 years, Barbara now assists me along the dementia trail by tactfully helping me remember things. I only have to glance at her, and she comes to my rescue, often with a sensitivity that allows me to retain some dignity.
Before we attend gatherings, for example, we talk about the people we are likely to encounter. Or she will tell a story about an earlier time to prompt my memory. Sometimes, she uses this tactic during our conversations with others to help me remember more about someone. That’s so much better than being asked directly if I remember something or someone.
Words matter, especially when talking to someone with dementia who has become sensitive to slights or false assumptions. When I hear someone talking about “losing” a living friend or relative to dementia, it makes me sad because the “lost” person is still alive, albeit with diminished capacity.
Many readers have shared ways to be helpful, some as simple as introducing yourself by name when saying hello to a person with the disease, the same as you would do on the telephone, or by prompting memories through photos and storytelling. And by never talking about dementia sufferers in their presence as if they can’t hear or understand, because no one can truly know what another person perceives.
It is common for people with dementia to become introverted, avoiding social interactions that could be good for their cognitive health. Like others, I have become more withdrawn socially. I skipped a recent chance to visit my former workplace, and I avoided a dear friend’s memorial celebration of her mother’s life because I simply didn’t want to risk being embarrassingly confused by an unfamiliar setting or come across people I should, but can’t, remember.
Dementia spawns uncomfortable moments without warning. Recently, while refilling a prescription, a jar of peanuts caught my eye, although I’m not supposed to eat them. I love peanuts and hadn’t tasted them in years, so despite the potential discomfort I bought them and savored a handful before even starting my car.
When I got home, with much excitement and a little shame, I showed the jar to Barbara and asked if she wanted some. “No,” she said emphatically. “I don’t eat peanuts.” The last time she did she ended up in the hospital for six days.
I had no recollection whatsoever of that life-threatening event, an unforgivable lapse. I left the room and shuddered while collecting my thoughts.
My malady is a thief that steals memories at random with no regard for their significance or timing. I can recall seemingly inconsequential happenings throughout my life, but I don’t remember some of the most important moments, such as weddings, funerals and hospitalizations. So much of who I am is associated with who I have been, so I mourn the stripping away of my personal identity as my past relentlessly disappears chapter by chapter.
While I have always appreciated my memories as an instinctively inquisitive person and as a journalist, I now treasure the remaining recollections with new-found gratitude.
My short-term memory is essentially gone, leaving me to rely heavily on sticky notes and my cellphone’s memo function for reminders. Even that doesn’t always help. I recently asked Barbara if we had ever tried a certain restaurant, then she reminded me that we had celebrated our grandson’s birthday there two weeks earlier.
Not long ago, when I awoke in a motel room while visiting our daughter’s family in Oregon, I had absolutely no idea where I was or what I was doing. Barbara was sleeping soundly, so I wasn’t concerned. But no matter how hard I concentrated I remained deeply confused until a brochure on top of the dresser revealed our location.
Sometimes, even normal conversations are challenging. I often think of something to add to a discussion then forget my thought by the time I get a chance to speak up. This can also lead to concerns among friends: “You seemed distant at lunch today. Are you OK?” There are times when the answer is clearly “No.”
I do get depressed about my loss of clarity. Analyzing anything with more than a few variables can be difficult. Occasionally, the depth of my confusion is overwhelming.
But dementia has also reminded me that there is a brighter side to every shadow. The disease has given me a deeper and more meaningful appreciation of life and time. That, in itself, is a blessing.
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.