I used to be afraid of Alzheimer’s. Petrified, actually.
A First Meeting With Alzheimer’s
My first exposure to the disease was when I was about 7 or 8 years old. My mom, sister and I were visiting my grandparents in Florida and we went to visit my grandmother’s cousin Selma. Selma lived in a nursing home a short drive from my grandparents’ house. The first thing that stood out about this visit was my grandfather waiting outside. With no cell phone for entertainment, distraction, or communication, without even a book or newspaper to read, he couldn’t go in, even though it would be a long wait. I don’t remember whether I was told that he found it too upsetting, or if I later figured that out on my own.
Inside, Selma was in her bed in her sparse room. My sister, maybe four or five at the time, climbed right up into the bed and held her hand. They both smiled. My mom and grandmother stood on one side of the bed, and I stood on the other. My mom and grandmother attempted conversation with Selma. She was responsive, but it was clear to me that she didn’t really grasp what was going on. My grandmother explained the family ties, and Selma smiled at us children, though she couldn’t put the pieces together of exactly who we were. She called my mom by the wrong name. She called my grandmother by the wrong name. She never learned my or my sister’s name.
Sometimes when she spoke she was confused about the present. Sometimes she was speaking from within the past. There was no “conversation” that lasted more than a few seconds. She didn’t get out of bed, never even sat up while we were there. While all of this non-action unfolded, I froze. This is what happens? This is how people are when they’re really old? (She was a generation older than my grandmother.) Someone must have explained to me that Selma wasn’t just old, she had Alzheimer’s, because I definitely knew the word and definitely always associated that word with Selma – and my nightmares of what could happen to me.
Getting To Know Alzheimer’s In Person
Many years later – three decades later – my grandmother was diagnosed with Alzheimer’s. My grandparents had a loving marriage for over 60 years. My grandfather died of kidney failure before my grandmother was diagnosed. I was and am grateful that he didn’t have to watch her deterioration – though I have no question that he would have still loved her and cared for her to the best of his abilities.
My grandmother was a very smart woman. Even when she didn’t understand everything in a conversation, she could hold her own very well. She knew how to fake it. There was a time when visiting her meant having the same conversation every couple of minutes because she didn’t remember that she’d just asked me the same question and I’d already answered. But she had that conversation well every time.
The progression of the disease was slow and drawn out, but always moving downward. Even in the last two years of her life, when my grandmother would hold onto a thought for little more than a second or two, the grandmother I knew was still there. And I learned something with her that I couldn’t have learned from Selma: a loved one with Alzheimer’s is still a loved one. I still had a connection with my grandmother, and she with me, even if she couldn’t remember what it was. When I brought my children to see her, she probably didn’t remember they were her great-grandchildren. She certainly didn’t remember their names, or even mine, but it was clear that she understood that we were important to her.
Finding The Unexpected Gifts
My experience with my grandmother helped ease my fear of Alzheimer’s, but it was two years after her death when I read Unexpected Gifts: My Journey with My Father’s Dementia by Eve Soldinger and became no longer afraid of the disease. My biggest fear around it had been completely losing myself (or completely losing a loved one). The regression is so awful; it seemed to me that the person with Alzheimer’s all but disappears.
Soldinger showcases in her narrative about her parents’ experiences with dementia that decline isn’t the only story. As one example, she tells of her mother singing in her nursing home. As a young woman she had been a talented singer, though never a professional. As an elderly woman in a nursing home, with Alzheimer’s and a breathing tube, she could still belt out songs! And while she did so, she was under the impression that all the other people in the nursing home were there to listen to her sing in concert. Though her understanding didn’t match reality, it fulfilled a life-long dream that otherwise would have never come true.
Dementia in any form is not something I would wish on anyone, but I am thankful for the new perspective I’ve gained. It is hard. So, so hard. It is a terrible disease. But the person with Alzheimer’s does not disappear and does not only deteriorate. This stage in life is still contains growth and value and joys. This is something I could not have seen as a young child at Selma’s bedside when my impressions and fears were being formed. As my own parents age, being aware of the unexpected gifts allows all of us to have a more meaningful experience.
This post is part of Common Grief, a Healthy Living editorial initiative. Grief is an inevitable part of life, but that doesn’t make navigating it any easier. The deep sorrow that accompanies the death of a loved one, the end of a marriage or even moving far away from home, is real. But while grief is universal, we all grievedifferently. So we started Common Grief to help learn from each other. Let’s talk about living with loss. If you have a story you’d like to share, email us at firstname.lastname@example.org.