I am choosing to share intimate personal experiences with you which are not normally disclosed. Please allow others with genetic disease in their families to continue with their private lives. Please see Genetic Etiquette.
I don’t know my status.
I live under my own magnifying glass—a constant examination of my memory, choice of words, and emotional state. All aspects of my life are stifled by the knowledge that Alzheimer’s disease (AD) in our family is linked to a specific traceable gene. Aptly called early-onset AD, it begins to noticeably affect individuals in our family between the ages of 38 to 48.
This book is about a ten-year death sentence of living with a mother who has a disease that her parent had, and in turn may be festering inside of me. These snapshot chapters capture initial symptoms, progression with AD, my mother’s strong living will, honoring end of life wishes, the decline into death, our familial participation in genetic research, the discovery of the genetic link in our family, the effect of Mom’s disease on family members, and grappling with my own future. (Please click on the blue fonted links above this section to read actual excerpts from the book.)
Mom was 48 when symptoms began slowly, nearly unrecognizable. She stopped doing laundry. A pack of cigarettes was lodged in her glove box and stale smoke lingered on her clothes. It had been 25 years since she lit up. Evening meals were not prepared, justified by the daily pizza my brother brought home from his job. Only in retrospect am I able to realize these were preliminary indicators. Five years into the disease, her youthful appearance led unsuspecting strangers to treat her as competent. In the end stages, she was dangerous when her anger and brute strength merged.
The ironic gift of genetic Alzheimer’s was Mom’s intimate awareness of the disease. My mom’s mother, Julia, began noticeable memory impairment at age 39 and was subjected to shock treatments for depression. The genetic component allowed us to see Mom’s initial symptoms as AD and enabled Mom to determine end stage wishes. Mom’s living will ensured that her disease didn’t drag out as it had for my grandmother—eighty pounds, antibiotics, drooling, feeding tubes, and in the fetal position. After a stroke and hospital visit, the CAT scan showed there was little grey matter left and we wondered how Mom was functioning. Residing with Mom for her final month, I watched death take her body as it had already done with her mind. Meanwhile, I witnessed her spirit and heart still connecting despite the improbable physical barriers. Mom died at 58.
Not knowing my status, I have chosen against committing to marriage, a career, or having children. Either I have it or I don’t. The only thing I can change is my knowledge. Turning inward I look for strength required to know or not know. It is elusive and meanwhile, my life is waiting.
I’ve realized I had to write this book without knowing my genetic status. If I knew I have the gene, I wouldn’t have the courage or confidence to write; I would doubt my use of language, my judgment, my memory. If I knew I don’t have the gene, I wouldn’t feel justified attempting to portray an accurate first-hand account, even in the past tense, if it no longer pertained directly to me. And I believe it is extremely difficult, if not impossible, to remember what it is like living with an unknown status, once the knowledge is gained.
I Have Tried With All My Might to Tell You the Truth
My soul somersaults, leaving behind my grounded sentence.
Flip, flop, more to see, more to do.
More to write, but the writing is serious. Too serious, in fact, to be read.
It will consume the naked heart with sorrow.
Watch your back, sadness creeps up.
It is all I have inside, yet my shaking knees may hide it forever.
I have tried with all my might to tell you the truth.
My heart would rather a kinder focus, twirling dances and passionate love affairs.
But my heart’s stabbed wound bleeds.
Copyright Kate Preskenis 2010