I Might be Losing My Mind

When they buzzed me into the locked facility, I asked the staff person to help me identify the person I was to visit. The brightly lit room was mostly quiet except for the TV playing on the wall. I had only spent time with one other dementia patient as a hospice volunteer, and I wasn’t sure what to expect. As the staff person pointed her out, I walked over to the table where she sat with three other women, and smiled. In her direct way, she asked, “Who are you?” I explained I was a hospice volunteer and I was there to meet her and spend time with her once a week. I asked her if that was okay with her, and if I recollect correctly, she shrugged her shoulders.

Over the next several weeks, I spent time trying to find out more about her, her childhood (which dementia patients sometimes remember well) and the kinds of foods she liked. She had grown up in a New York Italian family, so it wasn’t hard to guess some of the meals they had.

Each time I arrived, I had to be prepared to be a stranger to her. After a few months, though, she usually recognized me shortly after I arrived, and reached out for my hand with a smile. Sometimes I visited on days when they had guest singers. The patients and I loved it and often sang along. On other days I figured out that she liked coffee table books with beautiful photos. We looked at photos of animals from the Phinda Game Reserve. I think her favorite book was of Italy, especially photos of the sea and the fishermen in the villages at work. It was a way for us to engage with each other and enjoy the pictures, too. And for her, the photos were always new.

Then Covid-19 hit. And then I had cancer surgery and chemotherapy. My doctor suggested I minimize my time with strangers for a couple of months after my treatment. The lovely patient I had visited was transferred to another facility, and I lost track of her; she was likely assigned another volunteer. At this point, if she is still alive, any memory she might have had of our time together over two years is probably locked in a vault of her mind, never to be revisited.

* * * *

I began thinking of this patient after reading an opinion piece in the Wall Street Journal on dementia and other related conditions. Although I thought I was fairly well-informed, particularly on identifying Alzheimer’s and dementia symptoms, I learned some new information. One fact that surprised me was regarding diagnosis:

‘Neurologists say blanking on the names of acquaintances or having difficulty remembering dates from the past, especially when under stress, can simply be part of normal aging,’ says a Feb. 10 NBC News report. Such pieces typically note that only a medical doctor can diagnose cognitive impairment and dementia. That’s true, but it’s also true that dementia and mild cognitive impairment are hugely underdiagnosed. One study found a nondiagnosis rate of more than 90% for mild cognitive impairment, suggesting 7.4 million Americans unknowingly live with that condition.

Some tests are easy to administer under medical care:

Many older people also don’t get tested because they consider their failing memories to be a normal part of aging or stress. But diagnostic tests now in development could determine whether someone is mentally impaired simply based on how he speaks or walks, or even with a self-administered blood test.

Even Artificial Intelligence is being used to diagnose cognitive impairment, although the FDA and the Centers for Medicare and Medicaid Services have not approved of its use yet.

Why, you might ask, have I taken such an interest in cognitive impairment? First, let me reassure you that at age 74, my annoyances are mostly limited, as far as I can tell, to trying to remember someone’s name or why I just entered a room. Nevertheless, I am concerned. I wonder if I would be more comfortable living in ignorant bliss about my mental condition, or knowing that in ten years I will likely have dementia. If I have an early diagnosis, I may also be able to take medications to reduce symptoms, too, or delay the onset.

I remember watching a hospice training video on the subject that included a woman who was in the midst of developing Alzheimer’s. She was interviewed on a day when her cognition was stable, and knew what was happening to her and how her cognition would continue to decline, and my heart broke, watching her distress. She was trying to deal with the onset with courage and grace, but the tears in her eyes told the underlying story.

In one way or another, we are all losing our minds. The loss is inevitable, just like death and taxes. I just hope if I experience dementia, I can handle it with grace.

Time will tell.