Alzheimer’s and My Family
Hello and welcome to “Waiting for Alzheimer’s” and thank you for joining in reading my first installment! I hope to post at least once a week, journaling my siblings’ and my experiences with Alzheimer’s disease and our ongoing battle to keep from getting it ourselves. Can Alzheimer’s be prevented and even reversed in its earliest stages, even for those with the most common Alzheimer’s gene, ApoE4? Join me as we try to prove it can!
I would like to begin by telling you briefly about my family and our history with Alzheimer’s disease. I will go into greater detail on both in future posts. My name is Amy. I was born in 1977 and am the youngest of 10 surviving siblings. Their years of birth span from 1960-1975. My baby sister died in 1983 at three months old.
My dear mama started showing her earliest signs of the disease in her mid-to-late 50s, roughly 1996-1999. Two of her sisters and my dad’s sister had already been diagnosed, and one of her brothers was battling Pick’s disease, also called frontotemporal dementia. The majority of her remaining siblings (she had 11 brothers and sisters) also would fall to Alzheimer’s/dementia in the years to come. At least some of them also were early-onset.
I had served as Mom’s primary caregiver, alongside my dad, during the years before she entered the nursing home. What Mom’s diagnosis (and those of her siblings and Dad’s sister) could mean for me and my siblings was the furthest thing from my mind at the time. Not only was caring for her all-consuming, I also was in my 20s, still with the mindset that I was invincible when it came to health.
Mom had lived with Alzheimer’s for nearly 20 long years before finally passing in May 2016. I was in the early months of turning my own health around at the time, reading about brain health and learning the term ApoE4 for the first time. My thoughts on the disease turned to the future and to the fate of my siblings and me. Would any of us start showing signs in the coming years? Recognizing what is early cognitive decline and what is an innocent “senior moment” is like trying to tell the difference between identical twins. However, with a family history like ours, any senior moment an average person would brush off as nothing naturally would cause us greater concern and make us wonder.
My worry for all of our futures solidified itself in the forefront of my mind. Alzheimer’s became the dark cloud the hovered over most of my conversations with my sisters. Two of my sisters spoke to me about how scary it is. Do they carry the bull’s-eye on their backs? Do they already have it and just not realize? My brothers never talked about it much, at least not to me, but I knew they were just as much in the line of fire as my sisters and me. I wondered if they, too, worried about it.
My obsession with this family-destroying disease has only grown in the past year. It follows me from the time I wake up in the morning until I finally drift off to sleep again at night. I even had a dream last summer that has haunted me since: I was back at my parents’ old house, helping Dad take care of Mom during her earlier stages. Except the woman in the dream wasn’t my mom. She was one of my sisters. Throughout the dream I just kept thinking to myself, “How is this possible? How am I living this nightmare again?” I felt I had barely survived the ordeal with Mama. How could I possibly go through it again with any of my siblings?
Alzheimer’s seemed to be this massive black hole, slowly and irreversibly pulling each of us towards the abyss. Was there nothing that could be done to stop it? Every “expert” on the subject said the same thing: No one knows. No one knows what causes Alzheimer’s. No one knows how to stop it. All medications available are almost a joke. And it certainly will kill you in a slow and horrific way.
Are some or even all of us destined to fall to this disease? Am I doomed, as the youngest, to just sit with my hands tied and watch as one by one my brothers and sisters fall, all the while waiting for it to take me in the end?