Want the Best Advice? Talk to Someone with Alzheimer’s

I never expected that the best advice I’d receive would come from people with Alzheimer’s/dementia.

Guest article by Tori Tellem

Brief History

My grandmother lived in a memory care unit for about four years before she died. I knew nothing about Alzheimer’s/dementia prior to her diagnosis, other than TV and movie stereotypes of “wacky, forgetful wanderers.” I was discovering that there was much more to people with dementia than that.

After my grandmother passed away, I made the decision to provide companionship to those with Alzheimer’s/dementia. I would do everything I could to ensure no one with Alzheimer’s/dementia felt alone and, when possible, that they did not die alone.

Blazed Unique Caregiving Trail

I became a companion caregiver, or “social caregiver.” My focus has never been on the traditional aspects of caregiving as they relate to physical and daily needs. I blazed a unique trail to become part of the mental wellness of those with Alzheimer’s/dementia, something that’s sadly ignored.

Our one-on-one conversations were sometimes wacky or forgetful. I noticed people with dementia thrived while talking about topics such as love, marriage, and life. They might forget names, but not emotions or feelings. In turn, I received invaluable advice—gems I continue to dole out to friends in need today!

A Few of My Favorite Life Lessons from People with Alzheimer’s

“What’s not romantic isn’t right.”

My patients always tell me that back in their day, women and men were not afraid to express their feelings. They often couldn’t believe their luck, that this incredible person would choose to be with them for life. We seem to have moved away from this outpouring of emotion in modern day; we just don’t write love stories like they used to. Romance? Swipe left in case there’s someone better. Let’s bring back sweeping someone off their feet!

“The secret to love? Be truthful.”

I actually put this advice to the test with a friend before doing it on a first date. We don’t usually associate being vulnerable and having a strong opinion about something as first-date best behavior! But what happened was, our trust in each other grew quickly, our honesty became second nature and non-threatening, and we got to know each other and ourselves even better. And truthfulness is not only the secret to love, but also the secret to everything, really.

“Happy is where you find it.”

The question I get most is if it’s depressing being around people with Alzheimer’s/dementia. Sadness only comes when they die and not learning directly from them about their lives. A few patients, including the source of that quote, have had backstories involving a concentration camp. Others, the Great Depression. Yet they found the happy in retelling the experience, never sorrow. The Great Depression became about neighbors supporting neighbors. A concentration camp was about strangers who became friends, even in the worst of circumstances.

“Grey hairs are honorable.”

I’ve had wheelchair-bound patients tell me that due to their situation, they hadn’t seen much of themselves in a mirror in a very long time. I realized it’s easy to dismiss a compliment or to feel bad about how we look (especially when Covid-19 quarantine made coloring greys a challenge). Imagine not being able to see yourself again, or very infrequently, and having to rely only on others’ perspective of you. Wear your current body with honor!

“We have the same things, only mine are older.”

When I was first working around the elderly, I was kind of freaked out about touching them. I perceived them as fragile with their thinning, bruised, scabbed skin, and the brutality of what arthritis had done. I didn’t want to break them. I learned quickly that through the connection of our hugs, kisses, and handholding, I no longer felt their “damage” from age and disease. I was able to touch without actually feeling what my eyes could see. As my patients progress through the various stages of Alzheimer’s/dementia, this lesson in caregiving has always mattered most to me: Touch becomes our words. Touch is dialogue.

For more information, visit: https://www.comforthuman.org/post/why-good-mental-health-is-important-for-alzheimer-s-dementia-patients

Tori Tellem is the founder of Comfort Human™, which focuses on mental-health initiatives for Alzheimer’s/dementia, including Pen Pal-zheimer’s greeting card program and a baby doll donation drive to combat the effects of Covid-19 quarantine isolation. She is also a published writer and produced screenwriter, as well as author of the short book, Conversations with Alzheimer’s.