The Dementia Dilemma — Why We All Should Be Calling Our Parents and Grandparents
During the summer of 2019, I volunteered at a local memory care facility, a place that specializes in the care of individuals with Alzheimer’s disease and other forms of dementia.
I had no idea what an eye-opening and life-giving experience it would be.
Over a year has passed, and the memories I have of this place and its people remain close to my heart. It is sobering to think that few, if any, of the experiences I shared with those individuals have been retained in their minds.
I still remember my first day.
A collection of people in wheelchairs organized loosely in a circle was my introduction to the place. A collection of cheery wrinkled smiling individuals was my introduction to the people.
The people made the place precious.
Chuck was one of the first residents I got to know, mainly because he often disrupted the group’s “circle time” with his amusing antics. For all the time I spent listening to this man talk and explain things, I never did quite know what he was talking about. Dementia had so scrambled his mind and memory that he spoke in a babbling stream of consciousness, his thoughts unintelligible to those around him.
Despite the destruction wrought by the disease, it was actually quite difficult to feel bad for Chuck because he was so joyful. He was constantly doing and saying things that made both him and others cackle with laughter.
In one session of circle time, the director of the center asked the residents a question, and a nurse standing nearby whispered the answer under her breath. Chuck turned right around and shushed her about as loudly and disruptively as you can imagine.
The director, the nurses, and I cracked up. Everyone knew it was a good-natured and comedic gesture on Chuck’s part because after his little interruption, he looked at me with a wide smile and chuckled his signature wheezy chuckle.
Of course, not everyone was as gleeful and content as Chuck. One woman I grew close to during my visits, Ruth, was transitioning from the ordinary assisted living center into the memory care facility. She was developing symptoms of dementia, and her husband struggled to care for her and keep her safe in their apartment.
During my first few visits, she was at the memory center until her husband took her back to their apartment at 2 pm. This was to get her accustomed to the place since it was to be her permanent home in the near future. Over the course of my visits, I watched Ruth deteriorate.
For most of the morning, she was cheerful, gregarious, and delightful in conversation. Her eyes were bright and alert. But, as often occurs in individuals with dementia, the afternoon brought more forgetfulness and fogginess.
Every day after lunch she would come over to me or one of the nurses and ask where her husband was and when he was coming to pick her up. And then she would ask again. And again. Every five minutes, one of us would have to allay the fears of this nervous restless woman.
“Yes, he knows you’re here. He’ll come to pick you up at 2.”
What would we say when her husband was not coming to pick her up — when this place of forgetfulness was her “home?”
I distinctly remember the first day I saw Ruth after she began living at the center permanently.
I had to fight back tears.
The eyes that were once bright with life had become sunken, showing no particular interest in what they saw. She looked older. Her hair, skin, and even walk appeared to be more exhausted with the business of living than they had been before. I could not bring myself to talk to her that first day back. Her haggard presence in my periphery kept me on the verge of tears all day.
When I left that afternoon and got into my car, I did cry. I wept for Ruth, her husband, and even Chuck. I wept for the memories that were gone and the minds that grasped uselessly for them. I wept for all the people suffering from the ravages of dementia and I cursed the dreaded disease through tears.
During the summer of 2020, in a house on the border between Georgia and South Carolina, I sat in front of my dad’s dad (“Boss” as we call him) with a borrowed omnidirectional mic and a list of questions.
For the next hour, my dad and I asked for stories from the life of this strong weathered man. A man who lost his father to cancer when he was only 22, took over his father’s international shipping company soon after, lost two wives to cancer, and now was battling his own way through Alzheimer’s disease.
Our conversation started with hunting, which led us to the discovery that the first gun I fired as a boy was also the first gun Boss fired as a boy. That old 410 shotgun had passed through the hands of three generations.
We heard the story of him catching a 7-foot shark as a teenager. We heard about his old stevedoring company that unloaded container ships in Southeastern U.S ports. We heard about the deep love he had for his first wife, my dad’s biological mother, a woman whom I never knew. We heard about his second wife, whom I knew as “Mimi,” and how her entrance into his life was a Godsend to his family.
In an hour, we strained to capture a snapshot of a man’s life. Our hands grasped at the treasured memories partially out of desire, and partially out of necessity. If we didn’t record the memories, they would soon be erased by my grandfather’s rapidly progressing illness.
In the past two weeks, Boss has called to wish us a Happy New Year 3 times. Even though he still speaks coherently and converses about what’s happening in his life, he revisits the same topics frequently, often within the same call.
It’s still wonderful to hear his voice, but every time his mind slips, we get a painful reminder of the disease that is devouring his mind. Boss’s body is strong, always has been, so his body will likely outlive his mind.
What will my family do — what will I do — when the shoulders that have born so much life sag under the weight of a broken mind and the eyes that remained bright, even in the face of tragedy, stare vacantly.
When I think back to Chuck and Ruth, I find myself particularly curious about their children and grandchildren. Where were they? I wanted to meet them and hear from them about their ageing family members. I wanted to see them laugh with and cry over these people who had become so disconnected from community and reality. Maybe the families visited on days when I wasn’t there. Maybe they never visited. I hope the former.
People with dementia desperately need for someone to hear them, and hear them again, and hear them again. Though their memories are fading, their need for love and community is not. But, who will listen? Who will listen to the ramblings of a raspy air-force veteran, or comfort the anxious old woman, or answer the repeated calls of a forgetful grandfather?
It’s hard, this business of caring and loving. It’s much easier to steer clear of the nursing home, to mechanically administer reassuring words like a pacifier, to ignore the calls.
We must fight this urge. I must fight this urge. This desire to compartmentalize the deterioration and the disease, and leave it in the “memory care facility,” so we can go about our lives. Dying isn’t something old people do; it’s something people do. Dementia isn’t a disease of the nursing home; it’s a disease of parents and grandparents.
These people and their memories are easy to take for granted, until they begin to go. And, when the harsh reality of age and decline hits us, we have a choice to make:
Do we take the easy out, letting our loved ones gently and quietly fade into the shadows of time and memory? Or, do we fight with them and for them, taking the time to let them know that they are loved? Do we ignore the tears and the hurt, or do we weep bitterly over what has been lost and joyfully over what is left? Do we answer the phone? Do we call back?
Personally, I’m picking up the phone as soon as I hit publish. Boss needs to hear that his grandson loves him.
And maybe I’ll ask him for the story about the 7-foot shark again…
[Note: the names of individuals have been changed to protect their privacy]
