Tag Archives: caregiver stories

Dementia’s Sidekick: Apathy

Several years ago, I bought a hybrid car. When you brake at a red light, the gas engine turns off and the car gets so quiet you don’t even know it’s running. My mom’s brain seems to do a similar thing. She gets bored, her neurons pause, thinking stops.

Quiet times at Lake Frances

Quiet times at Lake Frances

 

This kind of mental shutdown can be hard to deal with as a caregiver. It is a symptom that evolves in unpredictable ways. One version of this neural ceasefire looks like apathy, a problem one reader mentioned here last week. In the early stages of the disease, moments like this made me feel frustrated by my inability to keep mom engaged in anything. If we weren’t walking or making something, she would just drift into sleep mode the way my computer does when I stop typing.

I was afraid that if I couldn’t keep her engaged in things, my mom’s remaining abilities would also wither from lack of use. So I developed the habit of asking her to do easy things like hold an envelope for me while I put stamps on other mail. Although it was a small task, she felt it was her job to take care of that envelope — and that job kept her alert. If she was sitting in front of the TV I’d ask her to explain to me what was going on in the show. I didn’t listen to her answers very carefully because I was usually folding laundry or paying bills while she watched. But talking about the TV show kept her from dozing off. Usually she did what I asked, but researchers recommend that if a person with dementia doesn’t comply, you should increase your eye contact with them and break the task down to something even simpler.

Keeping them emotionally connected becomes harder as the disease wears on. The dimensions of the problem can change in weird ways. Cognitive shutdown and disorientation can begin to occur around dusk. This phenomenon — called “sundowning” — may be caused by the shift in the body’s clock when daylight disappears. Researchers think it might also be related to the mental exhaustion experienced by people with impaired cognition. To help loved ones cope with this phenomenon, doctors recommend that you keep your home well-lighted and stick to a very predictable schedule for eating and going to bed.

These experiences can be frustrating for caregivers because a person with dementia can’t explain what they’re sensing. Although a caregiver feels the constant need to figure out how to manage the situation, sometimes it’s just not possible. Maybe those moments signal that it’s the right time for us to take a stress break. Try some deep breathing and, just for a moment or two, give your own motor a chance to ease into neutral.

When Dementia Takes Names

In the old days, I thought I’d be devastated when dementia stole my name from mom’s memory. I believed that once my name disappeared, we’d be in dark, ominous territory. The truth is, many other things were far more painful than the day she first lost track of who I was.

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Perhaps it was because my name stayed in her mental directory long after the words for shoes, comb, and fork had disappeared. She could still identify me six years past the onset of dementia. It’s also possible that since the emotional value of our relationship was never erased by the disease, the name business began to seem less dire.

The PBS program, The Forgetting, reminds caregivers that “recognition is more than a name.” It “isn’t a measurement of how important you are to the person” — it’s simply a function of which neurons still work. While I’m a bit sad that she forgot the name she chose so carefully in the months before I was born, ¬†she still seems to absorb the essence of me in a very comforting way. Given the choice of being known by a name — which is all that most people will recall about us — or being recognized for your character and how you make someone feel, I guess I prefer the latter. It’s a sign of deep connection and real love.

People probably think I’m nuts when I laugh about how my mom loves to walk with my sister and me, not realizing we are her grown children. She’s like a drunken sailor who can’t say who’s holding her hand, but feels sure that the odds of having a good time increase in our presence. That may sound crude, but I feel I must be grateful for small things that keep joy in our relationship. As the authors of The 36 Hour Day point out, “a dementing illness does not suddenly end a person’s capacity to experience love or joy, nor does it end their ability to laugh”.

It’s one of the few truths of dementia that actually add a bit of sweetness to life.