Tag Archives: dementia home care

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.

Act Now Before Dementia Does

I’m not young, but there’s a happy kid inside me. The color and noise of fireworks still brings thrills. Mom could not attend the 4th of July spectacle this year. But the rockets’ red glare made me oddly happy about past actions we took to help Mom enjoy life — despite dementia.

Flowers from Between the Pond and the Woods

It was only two years ago that my sister and I took great pains to haul Mom to the Stroudsburg fireworks. We’d never seen them in that town before and we wanted to arrive early. So we decided to skip the backyard barbecue idea and let a French restaurant serve Mom her favorite holiday food — salmon. It doesn’t sound very patriotic, but it made her awfully happy.

In those days, she was still walking well. We helped her along while dragging lawn chairs through crowds of restless kids and tired parents. I’m not sure she even realized why we were marching across the town. But she did it with a smile.

Although Mom still understood plenty, we were just beginning to comprehend how this disease would alter her and what that would mean to our family. Tough as it was to address her growing needs, I could see that the future would hold even more hurdles that could limit her social activity. The Stroudsburg fireworks were an early shot in a long campaign to take Mom everywhere, protect her remaining skills, and fill ourselves with memories of her doing things she loved.

Events like these were worth every bit of stress, sweat, and aggravation. It was worth choking on the second hand smoke of careless teenagers and walking for an eternity to get a good viewing spot. Until the first giant bloom of color spread across the sky, I don’t think she knew how our fireworks extravaganza would end. But after one radiant flower exploded she was delighted as a joyful kid by the sparkles above us.

These memories illustrate a point that’s key for families just entering the labyrinth of this disease. Don’t let your loved one’s awkward mobility — or your  private worry about reactions from strangers — keep you from offering them every kind of fun they can manage. The number of good family memories you can store up is limited only by your determination to make them happen. Time moves faster than you can imagine from where you sit today. Plan, sweat, slog, and enjoy all that’s good while it’s still within your power.