I promise to tell the whole truth about my Alzheimer’s caregiving

I sincerely hope I never mislead anyone reading this column into believing that the road through dementia and Alzheimer’s disease is a smooth and easy highway. After all, my columns are collectively titled “Treading Dark Waters.” Caring for my mother was an honor and a privilege, but I’d be lying if I tried to convince you that every day of that time was a pleasure for my sister, our family, and me as we shared the caregiving responsibilities.

A lot has changed since my mother was diagnosed and we were hands-on caregivers. Back then, it seemed resources for learning about the disease were scarce, or maybe I was so busy raising children while caregiving that I didn’t catch on to what was available. We learned a lot as we went along, and as the saying goes, “Experience is the best teacher” — though someone once added, “and a fool won’t have it any other way.”

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We weren’t foolish, but we were desperate

We were desperate for true stories about providing care for someone with Alzheimer’s. We wanted answers to questions that had none. Unfortunately, no truth bombs exploded for us. Alzheimer’s caregivers were mostly untruthful, presenting a sanitized version of their lives that didn’t match our experience. It’s understandable, and it’s tough to speak about the ugliness of the disease. But not hearing it from seasoned caregivers caused us to feel inferior.

The caregivers whose interviews we heard or stories we read made caregiving sound effortless, as if they were sailing through the experience. While they sailed, we struggled. Surely, we had shared experiences with broadcasters and authors on the subject, but they didn’t speak to the mounds of daily laundry or to the guilt associated with caregiving. I don’t remember hearing how watching a loved one fall prey to dementia left them feeling devastated and sad. Where was the dark cloud that hovered above their heads as it did ours?

Surely, there’s a silver lining behind every storm cloud, but why did they skip past storm-inspired stories and straight to the silver-lining tales? We were striving to do our very best for our mother, but by comparison, we were inferior caregivers.

As time passed, and with more experience, I discovered why there was a disparity between our experience and theirs.

Spinning different stories

Family caregivers who have that life in their rearview mirrors spin stories a little differently than those who are in the throes of it all. That’s become my challenge, too. My mother is in a better place, and as our situation has changed, it’s more satisfying to reminisce about the sweetness of our relationship. We’re no longer 24/7 caregivers, and we tend to remember the good times and happy moments and share the triumphs of Mom’s good days.

This column is my mother’s legacy, an opportunity for her experience and ours to encourage someone who’s also a member of the Alzheimer’s community. I always promised to tell the truth regarding our experience with the disease and not to sugarcoat caregiving, but I’ve figured out that caregiving is similar to childbirth.

Childbirth and caregiving similarities

After hours and hours of painful delivery, a woman blissfully forgets how uncomfortable she was in labor. The outcome of her intense labor becomes the focus. A beautiful baby displaces the painful memories associated with the birth. My mother was an extraordinary woman before her diagnosis and during her time with Alzheimer’s disease, but the going could get rough. Even on the best days, caregiving is difficult and sometimes downright hard. It’s no picnic for the person battling the disease, either.

Telling the truth, the whole truth, the unsanitized truth of caring is proving more difficult. However, I’m committed to being truthful about Alzheimer’s disease and the caregiving experience. Along with the good, I’ll turn a spotlight on the bad and the ugly. The trick is learning to deal with that as well as the good.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.