Embodiment

Alzheimer and dementia caregivers experience firsthand the ravages of this disease. They stand witness to the decline of a loved one over the long arc of the illness. Subtle and not so subtle changes mark the passage of time and deterioration.

 

Over our years together I know Vera Cappelletti’s distinctive style. My mother dressed impeccably, matching everything seen and unseen. She had lipstick for each occasion and her nails looked professionally attended. Through my mother’s decline a different woman emerges, a physical manifestation she wouldn’t want to be caught dead … being.

 

In the best years of their life together, Jack and Vera seem happy. When my mother smiles her cheeks display the rosy Irish heritage of youth punctuated by dimpled corners.


As my father falls ill from a brain tumor and ultimately succumbs to Alzheimer’s disease, my mother’s cheeks grow pale and her lips more fixed. Gone are the dimples.

 

On the first anniversary of my father’s death, my mother suffers Bells Palsy paralysis freezing one side of her face — her eyebrow, cheek, lip and chin — into a perpetual grimace. It’s as if the palsy makes a visible, physical reflection of her grief. Over time the symptoms fade, but never completely go away.

 

As mom slides deeper into her own dementia, her cheeks grey and the corners of her lips turn downward. The internal battle casts a shadow over her face, a struggle she loses as plaques and tangles take over her brain.

 

Vera possessed an athletic build, the kind that wraps feminine softness around big-boned features. My mother never stoops to hide her height; she stands straight and tall.

Common among women of her generation, she loses inches to osteoporosis. While my father is alive, they maintain a fitness routine helping to build some physical strength she uses as she tries to be my father’s crutch when illness eroded his mobility.

 

After he passes away, mom tries to carry on. She joins a gym to walk the track and swim in the pool regularly. But the war raging in her brain derails her efforts to be healthy.

 

A transport wheelchair is introduced after the first bad fall. Mom welcomes this as a necessary evil required only until she’s back on her feet. The rolling walker is the next piece of invasive equipment, as her legs prove unreliable over time to support the weight of her body. The walker wheels on one side and with a handy seat on the other, it seems a marvel of modern technology to me. But, my mother hates the walker. She understands that it’s no longer temporary.

 

When visiting in the advanced stages of memory care, I see staff helping my mother to walk using straps, supports and a person on each flank. The practice restores the mobility she sorely misses. But these momentary glimpses underscore just how much she’s declined. Her legs no longer extend to their full length and each leg behaves independently in the act of walking. Over time, my mother returns to a wheelchair until she becomes fully bedridden by this despicable disease.

 

Mom’s eyes were always a deep jade green color. If it’s true that the eyes are the windows to the soul, her eyes tell me the story of her descent into dementia. She was never terribly subtle, my mother. Her eyes gave away her every mood. The sharpness of her disappointment and the softness of her compassion broadcast through those eyes.

 

The changes are most noticeable when terrifying delusions and hallucinations descend; her eyes become black, vacant. What you might experience when someone has a seizure, as if the body protects by secreting that person away for a while. When episodes end, mom returns but her eyes progressively lose luster. They pale. In memory care she takes to wearing sunglasses all the time. She thinks it’s a way to hide, but I think they give her a funky diva-look instead.

 

I joined the 2017 Alzheimer’s Association Advocacy Forum with 1,300 others in Washington, D.C. We met with our representatives to discuss the critical need to support funding at the National Institutes of Health (NIH) to find a cure for Alzheimer’s and the related dementias. Throughout the forum I carried a collage of my mom – pictures of her life and her decline through dementia. I left the collage with Senator Patrick Leahy, a strong and vocal supporter of our cause.

Thank you Senator Leahy for all that you do for the state of Vermont

and the state of our world.

 

Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.  
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.