Alzheimer’s And The Fight For Autonomy.
My father’s birthday is in three days. He would have been 96 which shocks me because he remains as he was. At least to me.
And it was 18 years ago today that he was admitted to a “care” facility that, to this very day, remains one of my greatest life nightmares. I’ve told a few people close to me never to put me there if being “put somewhere” becomes a need. This place will never release its grip on my mind and heart.
Alzheimer’s is a dreadful disease. You probably know this already.
It runs in my family on my father’s side with his mother, aunt, and uncle succumbing to it as well. It’s never far from my thoughts as the years move on. How could it not be.
Since the loss of my father’s sister, and my last elder family member, two weeks ago, I decided it was time to go through a large plastic bin, the kind you get at Target, containing medical records, legal documents, e-mails, hand-written notes…every piece of communication related to the passing of my parents. I had two of them.
My father began showing signs of Alzheimer’s slowly, yet it was when he was driving down the wrong side of the road at night that we knew changes were needed fast. His “wheels” were everything to him, and taking away his car keys was a major injury to his life force.
At the time, he was living alone in a small apartment and we visited often, preparing meals, doing his laundry, just spending time. It’s what adult children do as caregivers for their parents. Or should. It’s filial responsibility which is about being there, being aware, and helping them remain independent until they cannot any longer.
I saw the decline happening albeit slowly and one night when I called him, I told him to take a dinner I had prepared and put it in the microwave to heat it. I had placed step-by-step directions on 5x7 cards for this and other things, asking him to do it while I was on the phone. He was silent.
“Dad? Go over to the refrigerator, get the plate, remove the cover, and put it in the microwave for 60 seconds. I’ll stay on the phone.” Silence. My heart started pounding as I wasn’t sure what was happening. It then became clear. “Dad? Are you there?”
He did not know how to stand up.
I tried explaining what to do. Bend your legs. Use your hands to push yourself up from the chair. You will stand. Keep the phone to your ear. I will help you do this slowly.
Silence.
It suddenly became funny to him because at some level, he knew something was wrong. And when he started laughing, so did I. Sometimes we laugh at the oddest moments.
We laughed together for a few minutes, only my heart was breaking because I knew what was happening and what was coming. As I learned when cleaning out his car, he also knew because I found folders about Alzheimer’s, vitamins, and diet. He knew too. Those few moments of laughter didn’t dim the reality of what was ahead.
It was after my father was living for a few months in an assisted living facility where they had full knowledge that he was in the early stages of Alzheimer’s that they asked us to take him for another evaluation. The signs of this merciless disease continued and while we weren’t in denial and knew his path wouldn’t improve, we agreed.
Arriving at the medical facility, the day was warm and sunny and because my father lived for the air and outdoors, we all began walking slowly toward the door, up a bit of an incline, and not in a rush.
My father and I walked together and when his pace slowed a bit, likely to simply take in the day, without thinking, I took his arm. He quickly snapped it back and said, “I can walk myself” to which I said that I knew this and just wanted to help.
To this day, his reaction was one of those life learning moments that taught me about the importance of autonomy as we age and especially when it comes to our parents. He was desperately trying to maintain it and his ability to navigate a walking path toward a door. To not be stripped of his dignity. I quickly realized what was happening and just said, “Sorry Dad” and we kept going.
My father was an incredibly independent man. He used to tell us that if he lost his ability to care for himself, to take him out to the woods and let him live out his days there. We called him the “other” Euell Gibbons and for those unfamiliar, he was the quintessential outdoorsman and earliest advocate in the 60s & 70s for healthy eating and lifestyles. My father was the same.
He would eat berries from bushes and nibble on greenery from the woods. He’d cup his hands to sip water from clear streams. He made his own trail mix before it was something carried in supermarkets. He wasn’t fond of laundry detergent so often would concoct his own. He started the first recycling program at my high school decades ago, urging people to care for our planet. And now he could barely care for himself.
When you’re in the midst of caregiving, you’re focused on the immediate needs while trying to look ahead to plan for what’s to come. And when it comes to Alzheimer’s, it’s often unknown because while you learn plenty in the midst, every path is different.
You worry about things that we take for granted daily — eating, sleeping, personal hygiene. I worried about what my father was thinking and doing when he was alone. At every visit, my greatest concern was whether he would recognize me at his door. Only once did he say, “I think I know you” to which I responded, “You do? Who am I?” He quickly said my name so I could take a breath.
Having just read every page of his yearly calendar the year before he passed and reading his notes, his struggles were right there. In his own handwriting. With an overlay of confusion that he likely knew existed but struggled to understand why.
He wrote himself questions and then tried to answer them. He would make a plan to call someone at a particular time only to realize the following day that it never happened. He noted everything he ate, his bathroom routines, his aches and pains, questioning himself often times as to what to do next. He worked all his life, in his latter years at a nature center as a naturalist and educator, and spoke about it often. Even in the midst of this disease, his purpose mattered. So heartbreaking because I wasn’t aware of his writings until now.
One of the pages upon pages of notes from the facility which was his next “home” after the assisted care facility just broke me into pieces. He was desperate to go outdoors and because the elevators were locked and they put a wrist alarm on him, he apparently tried to remove it. My father’s heart and soul lived outside and he couldn’t make them understand that he needed to be there. Like the air we breathe, he needed to be outdoors.
They put a “stop sign” at his door and told him he needed to stay in his room where his window overlooked a field that he couldn’t get to. Their note on this form was that he asked, “What did I do?” I’m crying now just writing this.
What did I do.
He only tried to do what he did all his life. To have the freedom and autonomy to follow his heart. To have the ability to make choices. To be in control. All things lost when this dreadful disease ravaged his mind, making it difficult and then impossible to stand up from a chair no less go outside for fresh air.
It’s often easy for those of us as caregivers to take charge. To do things ourselves. To make decisions and choices because it’s easier or faster. To think we know when there are many times when we don’t.
But easy isn’t the answer or path. It’s about helping another human being, often someone we love dearly, retain some of their dignity. I didn’t realize it when I gently took my father’s arm that day but quickly learned that doing so was stripping him of what he was desperately trying to hang onto. His autonomy.
It’s about showing respect even when it’s difficult. Providing grace to someone, parent or otherwise, who may be aware that they’re losing their ability to get through their days without support. Listening to their words and what they’re saying even when they’re having trouble telling us.
And for those facilities charged with caring for our loved ones, to listen carefully to the input from those who know the person best and responding accordingly. Helping them to retain and maintain as much control and autonomy for as long as possible. This is essential.
I never saw these 4 words before but I saw them now. What did I do.
You did nothing Dad. This disease did it to you.
— — — — — — — — — — — — — — — — — — — — -
Some articles that may provide some hope for those living in the world of Alzheimer’s…
