Dementia, my Dad, and Me

My Dad’s dementia has been advancing since January, and he’s in a nursing home now, in a wheelchair, his body having almost entirely given up at the age of ninety-one. Still, there are some sweet moments. I brought my Mom to see him recently and he pulled an envelope out from under his sweater with autumn leaves in it for her.

Then he had me wheel him around so he could case the joint for a way out.

Occasionally it’s a little funny like this, but mostly it’s heartbreaking, because my Dad doesn’t know why he’s there and will never understand why he can’t be home. But I’ve just come back from filming about climate change in Alaska, so to distract him I pull up a video of humpback whales breaching near our boat.

wo trips to Alaska this year have shown me the reality of our climate crisis: erosion from thawing permafrost threatening Native villages along the Kuskowim River, salmon dying before spawning in waters that are much too warm, widespread fires, drought, fear, all of it exacerbated by a governor and a president who are opening millions of acres of public land to resource extraction. For weeks after the first trip, I woke many nights terrified about the planet my sons and their generation are inheriting.

Now, what I saw there remains in me as a reminder that we will all suffer in the coming years, that everyone I meet is carrying some amount of grief and fear, and that compassion is the most appropriate response to almost any circumstance, including the slow loss of a father who, like many fathers, is complicated.

Two years ago, when he could still walk and had more of his faculties, I went home to Boston for the funeral of his only remaining sister, my 94-year-old Aunt Mary, who in an act of defiance renamed herself Roxie in her later years.

There, in the house in which I grew up, the one that still contains so many ghosts, my Dad asked me to come upstairs to do up the top button of his dress shirt, much as he had helped my brother and me get ready for church when we were small.

arlier this year my Dad fell half a dozen times, once badly, and he was sent to a rehab facility. My siblings told me he might not last so I threw clothes into a bag and drove the two hours to visit with my oldest son. There, in his hospital gown, in his shared room — we are allowed so little dignity as we approach death — he seemed lost, and scared, and sad, and he asked me repeatedly to take him home. I can’t do that, I said. You can, Chris, he told me. You can.

It’s hard to describe the feeling of seeing an old man so distraught, his health and free will gone, nothing much left but a small jukebox of stories: the time he sat next to Bobby Kennedy at the Harvard-Yale game and surprised him by predicting the next play call, the time he saw General MacArthur in Tokyo when, like Radar O’Reilly, he had typed up a weekend furlough for himself and a buddy when he was stationed in Korea.

I was visiting once, before all the falls began, and at dinner he launched into one of his well-worn stories. Seeing the serenity prayer my mother had many years ago taped to the wall under a kitchen cabinet, I started reciting it out loud: God, grant me the serenity to accept the things I cannot change…. My mother and sister laughed. My Dad didn’t notice, and kept right on with a story any one of us could have recited with him.

But at rehab, he begged me to take him home and it broke my heart and I told my son that I did not want to die like this. Then I texted a friend and told her that if I ended up this way she had to come and smother me. She wrote back, smother you? I don’t care how you do it, I replied. Surprise me.

I thought he might be close to dying but then he found my eyes with his and held my gaze and said, I am so proud of you, and he continued to hold my eyes with his, and I keep thinking about that moment and the healing it held within it.

Dad has not always been easy to love, and he was so often so self-absorbed that it’s been hard for me at times to love myself. It’s a mystery to me why this is so, why his immigrant parents who worked as domestic servants produced such a brilliant but narcissistic son. I loved his parents. Until I was nine, we lived upstairs from them in a Somerville double decker, and I remember my grandmother’s kitchen as a refuge, a place of unconditional love that I can bring back by recalling the sound of her old Frigidaire humming as she made a pot roast or a pie.

My Dad has often been hard to love, but over the past ten or more years, as he became more aware of his mortality, he softened, and expressed love more often, and took us into hugs when he saw us. He saw us more when we he saw us. I have forgiven him, as much as I’m able to, and I’m grateful that he has lived long enough for me to come to this place. He is mostly gone now and I miss him.

Except that he is not gone, and in families anything difficult can be made much harder through the playing out of ancient wounds. And so we argue, or walk carefully around arguments, about how to care for — and when to let natural causes take from us — a man who on most days is anxious because he doesn’t know where he is. When, on a recent visit, he raised his voice to make a speech to the other residents, my habitual embarrassment (I have many times been embarrassed in public by my Dad) caused me to shut him down. I almost wish I had let him talk.

is November, the month that always delivered one sunny Saturday when we would carry all the window screens to the cellar and bring the heavy, wooden storm windows upstairs. There, we would clean them with Windex and newsprint while listening to Ken Coleman call the Harvard football game. It was satisfying to get the glass squeaky clean, to see the sunlight slanting into the house through the bare branches of the maple trees, to hear the game, and to have the house buttoned up, as my Dad would say, for the holidays.

For a number of years he adopted the habit of wearing an ascot on holidays, although last Thanksgiving he did not. Last year, with his filter for polite conversation no longer working, he tried several times to tell the joke about the priest and the prostitute, and each time he began I stopped him. My Dad was briefly hurt and angry and I, too, was suddenly conscious of every time I had ever been held hostage to his need for attention. Then we both let it go, and he told his other stories, and we had our dinner and called it a day, as we had done so many times before.

I saw my Dad again today, in his wheelchair in the nursing home hallway, and it took me a fraction of a second to be sure that this old man with the whiskers was my old man. He brightened when he saw me and I kissed his forehead and held his hand, and I took pleasure in this simple act of holding the hand of my father as I thought of my own sons, who will soon be home for Thanksgiving.

My Dad told me that he is working at the railroad now, that it’s keeping him busy, and that his parents are at home. I would like to believe that he can see them soon.

Writer, filmmaker, consultant to organizations working on climate change and justice issues.

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