Dementia and Alzheimer’s social networking sites are replete with venting; often relating to family dynamics over the care of a loved one with the disease. Caregivers, the hidden victims share heartbreaking perspectives about the battles that ensue, the hostility that results and the broken relationships often left in the wake of dementia family caregiving.
Family is the first casualty of life’s complications with the illness. When asked to put aside small or large grievances or step up to the challenge of coordinated family care, most of us are ill prepared.
At play can be the kinetics of sibling relationships, those that amplify in strength or weakness with each passing dementia moment. Or strain can come from the transformation of traditional roles. As parent shifts to child, even the hardiest souls will find challenge.
Prior to the illness each family member had a history with those affected by the disease. Bonds developed. Some strong, others weathered by time and experience.
The reality is, after years of building relationships; the disease relentlessly forces each to relinquish the relationships of the past. We define new roles and new relationships with each other.
Starting over is freeing for some and leaves difficult unresolved conflict for others.
Ironically, the individual affected by dementia and Alzheimer’s disease ultimately comes to relationships in a brand new way. They’re no longer bound by history; instead their reality is subject to ongoing change – for better or for worse.
Excerpt from “The Day the Wheels Fell Off”
We’re a family made of father, mother, sister, brother and me in working class, suburban America. I describe my growing up as average. Living in a circa-1950’s ranch-style home built in a large tract of homes that all look alike. Dad goes to work, mom stays at home and we attend school. Our most difficult challenge is picking the right home from the look-alikes as we climb down the steps of the big yellow school bus each day.
Amid our normalcy is the estrangement of my sister, the oldest in our family. Through eyes of a child, I see wealthy family friends pulling my sister Marian away to fill a hole in their otherwise childless life. Time stolen from our family leaves life long complications, silent betrayals and deep scars. And not just for her.
We maintain our sisterhood. Marian and I hold onto a bond that although strained doesn’t break as we grow and through our family dementia experiences actually becomes stronger.
When our father becomes ill: brain tumor, brain surgery, dementia, death – Marian is his primary caregiver. Marian attends to his needs and provides a constant shoulder for our mother’s overwhelming grief as they stand witness to the ravages of this cruel disease. My brother and I are ready to assist when Marian requires.
My brother Frank, the only son holds the highest honor of an Italian-American family: he’s the first grandson of the Cappelletti’s and is bestowed with the name of our paternal grandfather. A free spirit, Frank leaves home as soon as age allows. Time lost from the family; distance from the mundane of the day-to-day.
Time passes and Frank fields the first outbursts delivered by our formerly placid mother as she begins her slide into dementia’s abyss. Although complex due to the distance, our sibling circle of support continues to grow through the pain. My sister and I are ready to assist when Frank requires.
In time and with the support of my husband Tom, I become my mother’s primary caregiver. Through a gradual but sustained decline my sister and brother are there for me when I require.
Many years have passed since this illness first blew into our lives. My family has grieved together in the wake of our parents passing. On reflection, our care decisions were quite simple. They were really just about geography.
We now know along with our bonds and our blood, we share a common fear.
Dementia runs in our family.