MY MOTHER’S VOICE: Stolen by Alzheimer’s
by Donna L. Scrafano
Painting featured by Judith Carlin
The medical consensus believes that Alzheimer’s disease has purely biological causes. I feel, however, that traumatic events can also trigger this dreadful disease. This belief is based on my personal experience watching my mother battle Alzheimer’s.
The first trauma came when, following carotid artery surgery, my mother’s blood work indicated that she had lymphocytic leukemia. For the following eight weeks, my one-on-one time with her, became sitting with her during chemotherapy treatments. My mother tended to operate in a cautious, fearful, and anxious manner throughout her life in general, so during the entire process of testing and treatments, my family adopted a rule of silence regarding her disease. We took pains never to say the “C” word in her presence.
Later that same year, my mother took a hard fall that left her unable to walk. She needed to have major neck and spine surgery to correct the damage. It was after this surgery that the signs of Alzheimer’s began to appear. My mother’s short-term memory and decision-making abilities began to fail. Over the next five years, there were a series of hospitalizations and nursing-home admissions, all of which were very unsettling for her. Her short-term memory gradually worsened, and several years later, she was diagnosed with vascular dementia, which is caused by inadequate blood flow to the brain.
Nearly six years after her cancer diagnosis, my mother was diagnosed with Alzheimer’s. From then on, each hospitalization and nursing-home admission became a bit of a nightmare not only for our mother but for the family as well, as we all began to witness the full spectrum of Alzheimer’s symptoms in my mother’s behavior. Until then, we were still unaware how much Alzheimer’s distorts the brain. My mother’s thinking now became horribly skewed. For me, the most difficult time was when she identified me as my father’s “girlfriend.” The medical team tried to be reassuring, saying that this type of thought process was common with female dementia patients. Nonetheless, I was emotionally devastated.
As the disease progressed, the family attempted to normalize her and our father’s lives. But it wasn’t easy. We watched her personality disintegrate and her voice fade. She became paranoid, argumentative, and very mean spirited, especially toward my father and me. For me, this is when the mourning process for the loss of my mother began. That person was simply not my mother. In November of the following year, the family made the difficult decision to place our mother in a long-term skilled nursing facility, as she had forgotten how to walk. I visited my mother only weekly because when I would arrive, she would become agitated. It was evident that this woman who was once my devoted, loving, caring, supportive mother, was seeing me as the enemy. She would say horribly mean things to me, such as “it’s your fault I’m here” along with other abusive nonsense. It was clear that she had completely dismissed my existence as her daughter. However, her sweet side would surface when my then three-year-old grandson was present. Therefore, I began to always take him with me when I visited. I would never go alone.
My father visited my mother every single day, despite the emotional battering he received from her, and though I came only once a week, I remained in constant communication with the head nurse. I relayed to my family her instructions on what to pay attention to during visitations, and made sure the facility knew the family was paying close attention.
Here are some suggestions of how to be your loved one’s voice when Alzheimer’s takes over: Communicate with the head nurse, the facility doctor, and the CNAs; bring treats to the nurse’s station; call when you cannot physically visit; review medications; check all hygiene components, both personal and physical; document daily communications; be your loved one’s advocate; have a DNR (Do Not Resuscitate form) in place. Most importantly, partake in self-care.
Three years after her Alzheimer’s diagnosis, my mother’s physical presence left this universe peacefully and with dignity. “My mother” as I knew her, left her family and this universe long before her physical body did. My mother no longer agonized and was finally at peace. It was a long journey for all of us.
For more of Judith Carlin’s work: http://www.judithcarlin.com/
Donna began her journey in Human Services in 1983. During the next 35 years she held various positions and formally retired in 2018. She writes on an array of social issues. Donna’s relaxation time includes walking her Lab, Roxy, having fun with her six grandchildren, writing, spending time with friends, and applying self-care. Her current full-time position is care-taking her 90-year-old father.