A Father’s Journey Through Dementia
It was a Wednesday afternoon when I realized my father had lost his mind. Not metaphorically–his mind was literally lost–a jumble of wires snaking through the recesses of his brain, picking up past memories, and twisting them into knots, creating events that never happened and muddying everything he knew, and all he had experienced. I just hadn’t noticed it until that day.
I was in town from San Francisco, visiting my parents for the week in their Manhattan apartment and had plans to meet a friend for lunch. My mother was out and my father, at 86, was wheelchair bound, and a bit forgetful, but otherwise seemed himself. I made him lunch on a tray, wheeled him in front of the TV to watch the History Channel and left for my lunch date. When I returned a couple hours later, he was in the same spot and a simple question shook my world: “How was your lunch?” I asked.
My father had a booming voice, and spoke the Queen’s English, although his accent had slightly diminished after 50 years living in America. “It was lovely,” he answered. “I am very much liking this new company I work for. A woman brought me my lunch here in the conference room as I had to work through lunchtime, I’m so busy, you know.” My eyes widened as I tried to determine my next move: laugh, correct him or go along with it. “That’s great, dad,” I ventured. “What’s this new company you work for?”
“Well, it’s a publishing company of course,” he answered. Dad had never worked in publishing-in fact, it was I who had worked in magazine publishing for years. “But it’s been a long day,” he said, “and I’m ready to go home. Are you ready?” I felt as if I were playing a game of chess, working out my next move, without a psychology degree. So, I went all in. “Sure, dad, let’s go.” I grabbed our coats, wheeled him out of the apartment, downstairs, and around the block. We arrived back 10 minutes later and as we entered, he breathed a sigh of relief. “It’s good to be home,” he exclaimed.
Watching a parent lose their mind is a slow, meandering process. For my parents, it happened ten years apart and at such a snail’s pace that looking back I can’t see the line between sane and not. I can’t point to the moment they were gone, but for both of them it was long before they died. The dementia took hold of each of them in very different ways. For my mother, it was increasingly profound forgetfulness, and complete short term memory loss, which made conversations a merry-go-round of repeating the same thing over and over. But for my father, it changed who he was, and manifested as a part of his character, his personality, amplifying and exaggerating aspects of him in wild ways, making him almost a cartoonish version of his true self.
An eternal optimist, my father was from another era. Born days after the end of WWI in 1918, he was raised along with his three brothers in Buenos Aires by their Scottish parents in a very British household. In his later years, he reminded us of Alistair Cooke, the former host of Masterpiece Theatre. He could often be found sitting, a book in his lap, dressed in a blazer with a perfectly folded handkerchief in the pocket and an ascot around his neck as though he was getting ready to introduce that week’s episode of ‘Upstairs Downstairs’. He was always happy to see you, no matter who you were.
My Argentine cousins remember him as the most charming of his brood of brothers, always bringing toys and candies when he visited. He loved people, good conversation, a cup of Earl Grey in the afternoon and a cocktail at 6 sharp. A charmer and a dreamer, he was always the life of the party, full of love and very handsome. He adored his children and would take us for long walks in the park and tell us stories of his life. We would make up riddles together and sing Glen Campbell’s ‘Rhinestone Cowboy’, his favorite song, perhaps because it was so quintessentially American. My brother sang it at his funeral.
Looking back at a person’s life, it’s telling how the little things you remember embody who they were. Not their major accomplishments, but the small shared moments, their favorite songs and daily rituals, that’s what sticks.
As he entered his 80s, the charming, loving, talkative father of my childhood existed only on our 8mm silent home movies. Dementia doesn’t announce itself when it arrives. It sneaks in and hides, showing up in small moments that very slowly get longer over time until before you know it, before you have a chance to have one last, deep, thoughtful conversation, it takes over, and it is too late.
There are stages, just like with grieving, and rage is definitely the most difficult. My mother took the brunt of this with dad. For months she had been complaining about his anger, that he would yell at her, unprovoked. We brushed it off. It didn’t sound like dad, she must be exaggerating. She was not. I was at their house, on the phone with a friend when he started yelling at me and using terrible profanities. It was shocking; never had I heard him swear before, it just wasn’t in his lexicon. I ran to the kitchen and burst into tears. I had such immediate sorrow and understanding for what my mother had been dealing with, what we had all brushed off.
Dementia doesn’t announce itself. It sneaks in and hides, showing up in small moments that very slowly get longer over time until before you know it, before you have a chance to have one last, deep, thoughtful conversation, it takes over, and it is too late.
Looking back, the hallucinations and false memories were the most fascinating. I have always been interested in optical illusions–the way the mind can trick you–but with dad, his mind created whole new worlds and events. Looking out the dining room window one day, he turned to me and said “isn’t Buenos Aires the most beautiful city?” “It certainly is, dad,” I said as I looked out at the streets of New York City. On another occasion, he was exhausted. “Why are you so tired?” I asked. “Well, I just rode my bicycle from North Carolina to New York!” he cried. “Wouldn’t you be tired?”
I turned 40 the day before he died, and for a fleeting moment he was aware that it was my birthday. My sister reminded him and he turned to me. Our eyes met, and for the briefest moment, I saw the recognition–he smiled at me with such love on his face, and said “oh!” and then just as quickly it was gone, forgotten, and the confusion came over him again. The next day he was gone.
A Beautiful Ending
Despite all, he died a beautiful death. We had moved him to a nursing home near my sister in the last year of his life, and my brother called to tell me to fly to Virginia, that he was not doing well. I came the next day. It was the end of July and it was hot and sunny. Dad was in hospice and we all sat with him, reading aloud, singing songs, talking. We took turns spending the night with him, not wanting to leave his side.
The day he died, I was alone with him, my brother and sister off getting coffee and he turned to me and said, “you’re all here.” “Yes, dad,” I said, “I’m here, Didi and Reid will be right back.” He was staring at the wall in front of him. “all of you, he said, Jimmy and Ian are here too.” His two older brothers, both of whom had died a few years earlier were there in the room and he could see them standing there, clear as day. He pointed to them and smiled and looked at me as I stared at the blank wall. It occurred to me later that he only saw his two brothers who had died. Of course, he could not see his younger, living brother, Ronnie. Dad died that night.
I could not remember him for the longest time after he died. It had been so many years since he was ‘all there’. I couldn’t picture him–his face, his essence–it was a blank. And then, slowly, it started coming back–the real him. Now, years later, when I think of him, I remember dad, pre-dementia. The person he was in the last, sad years of his life has receded into the back rooms of my memories and the man he was at his best is there up front. It’s how I always wanted to remember him, and my brain has obliged.