AlzAuthors: Blogger Lisa B. Capp, Caregiver "Survivor"

by Lisa B. Capp

Everyone knows someone touched by dementia or Alzheimer’s disease.

We write, because today these diseases cannot be prevented, slowed or cured. We seek answers because their manifestation is often irrational, frightening and perplexing. And, as human beings, we continually reach from darkness to find light, whether you’re someone living with dementia or you’re caring for a loved one with the disease.

Millennials grew up watching their parents shoulder the responsibility of a grandparent’s care or worse, witness to early onset of a parent. In the absence of a cure, millennials will likely become the primary caregivers to their own aging baby boomer parents; those who possess a cruel knowing of how this disease will change their lives.

Our world has faced many health crises and with enough time, talent and resource has moved the needle on many. My hope: We can do the same one day for dementia. I write, striving to make a contribution to caregivers struggling everyday in their role. My blog shares a caregiver “survivor” story of the 18-year dementia journey I shared with my mother, Vera.

“The day the wheels fell off” refers to the day my family was left with only one option – to involuntarily commit our otherwise healthy mother to a locked psychiatric ward so professionals might stabilize her psychotic delusions and hallucinations. My mother’s case presented little evidence of the more traditional memory loss and confusion that the media conditioned me to expect.

The role of primary caregiver fell to me; it was just geography. With a family steeped in the Italian-American tradition of cross-generational care there were ongoing expectations, compounded by feelings of falling short, wrapped around a perpetual sense of guilt and conflict. My family, like others, was beset by long-term strains. But as her illness deepened, we unified in the dedication to our mother’s care.

Sharing a home with my mother after my dad’s death, decline began and nighttime always bred apprehension. Women walked across the roof in high heels piercing the ceiling where she laid in bed, and winged monkeys pried at her bedroom windows. Late night screams and emergency room visits were commonplace.

From my blog:

Sentinel

As a caregiver to someone with dementia
  It’s difficult to remember what they were
   Before the tangles and the plaques

If I close my eyes
  And push the dementia away
   I see her from the seat of my bike 

 

 







She’s strong and vibrant
  Standing behind me
   Ready to catch, if I fall

I will stay with her
  Standing sentinel
   Witness to this long and slow descent

About the Author

A transformation champion working with senior leaders of business, government and non-profit organizations across five continents focused on change. I helped organizations that wanted to change their vision, their strategy, their results or their very place in the world. It proved more difficult to help myself on the transformational journey of dementia that my mother and I shared.

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