Caregiving and Loving Someone with Dementia
Posted on January 27, 2023 by Kathleen Duthu
The Alzheimer’s Association estimates that approximately 5.4 million Americans have Alzheimer’s or another kind of dementia.
It should not be my mother, who was healthy and active for 75 years. Who bought a treadmill and practiced yoga before it was vogue. Who hosted holiday feasts, gave thoughtful gifts, and spoiled the dog. Who showed her grandchildren how to pump their legs on playground swings.
Be realistic in your expectations for yourself and your loved one. Learn to expect the unexpected.
I am comforted when my mother behaves almost like she did before we saw the subtle signs. But I set myself up for disappointment when I expect her to remember previous conversations, or to know what day it is.
Last August, I should not have kept waiting for her to call me to sing her off-key rendition of Happy Birthday as she did for decades. I was angry, then devastated, and finally terrified that someday I might forget my own daughters’ birthdays.
Do not argue with your loved one. Be willing to let most things go to avoid further frustration.
I give non-committal replies to avoid arguing and struggle to divert my mother’s attention to other subjects. I make an excuse to hang up the phone.
Visiting her drains my patience and energy. I blink back tears when my father gently tries to reason with her because he can’t fully accept that she will never get better, only worse.
Avoid asking the person questions about the past. Don’t ask, “Do you remember?”
Sometimes I can’t stop myself from asking if she remembers a person or event because my history is so intertwined with hers. I don’t want to talk about the weather or ramble about my life in a place she can never visit again.
I long for her advice and need reassurance that all teenage girls challenge their mothers. I regret that I didn’t listen more closely to stories she and my grandmother told, now unable to share them with my daughters.
Don’t focus on what your loved one isn’t able to do anymore. Stay in the present moment.
At the nursing home, frail women hunch over walkers and slouch in wheelchairs, staring out the lobby windows. Lately, my mother asks less frequently whether she will ever leave there, so I don’t have to lie as often.
Her possessions are in a storage unit down the road. My sister and I already gave
away most of them, even the collectibles she told us to save, because the grandchildren
won’t want them.
Enjoy time with your loved one. Remember that Alzheimer’s or dementia is not a death
sentence. Many people live 20 or more years with the diagnosis.
I am grateful my mother still knows me. Some days I hate myself for wishing the illness had already made her unable to know what is happening to her mind and body.
I stay awake wondering, when is someone alive, but no longer living?