Live Fully

What does that mean, “Live Fully”? There’s no right answer. Each of us will define “a full life” from our own unique perspective. Be spontaneous; enjoy every moment? Set a plan and climb the ladder of success? Achieve fame? Travel the world? Have children? Leave a legacy? Learn something new every day? No right answer. When does “living fully” give way to something less?

I remember when my mother was in her final months of life, besieged by failing joints, muscle weakness, and advanced dementia – not to mention that a third occurrence of cancer was eating away at her internal organs. My husband, cousins and I shared many tearful discussions that included phrases like, “It’s so sad,” Or, “Please, if I’m ever in that condition, just put me out of my misery.” My brother, thankfully Mom’s primary caretaker, seemed to be the only one who was able to see beyond the obvious debilitating circumstances and recognize Mom’s stable ego. He understood that though she couldn’t or wouldn’t communicate verbally very much, she was still wholly present, traveling the journey from one day to the next in blessed contentment. While difficult for us on the outside to believe it, on the inside Mom was just as she replied when asked, “Fine, thank you.” Was she still fully alive in those final months before she died peacefully in her own home?

Maybe it’s time for all of us trailing lots of happy years behind us to accept that the road still ahead may have hidden curves or challenging bumps. Will possible limitations and necessary adaptations keep us from living fully? That’s up to each of us and how we define “a full life.”

Living Life to the Fullest With Alzheimer’s?
By Rebecca C. Morgan Stetson Law

Last week Kaiser Health News (one of my favorite go-to sites) ran this story, How To Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away’. The article opens explaining that Alzheimer’s is #1 on the list of diseases folks in the U.S. most fear.  The loss of self is a big part of that fear. However, “a sizable body of research suggests this Alzheimer’s narrative is mistaken. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life, overall, until the illness’s final stages… They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.”

Just how many folks with Alzheimer’s have a good quality of life? According to Dr. Peter Rabins,  “Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”  What are the implications of this? To make sure that folks with Alzheimer’s have a quality of life, “Promote well-being, which is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.”

Folks with severe or end-stage Alzheimer’s present a different challenge. For others, the article suggests the following: emphasis social connections, maximize physical health, improve communications, respond to unmet needs, and give deference to individuality and autonomy.

“None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that ‘improved quality of life should be a primary outcome of all dementia treatments.'”

Posted Monday, April 24, 2017 in The Elder Law Blog

Related Material: Teepa Snow’s “GEMS” Model of Stages of Dementia

In Asheville: Mountain Home Care Dementia Training for Caregivers

Online Resource: Alzheimer’s Association Dementia & Alzheimer’s Caregivers Support