DRR’s March editorial touched me greatly [BCMJ 2019;61:61]. It was about his dementia-touched father’s journey and walking with him on that journey “with grace, love, and laughter.”
Walking with my wife, who is being cared for at home through her deep dementia, means one caregiver walks backward in front of her while holding her hands, the other caregiver walks behind her lightly holding the transfer belt on her hips, and I, the back-up man, push her wheelchair behind this procession in case she falters or wants to sit down. We also try our best to do this with “grace, love, and laughter,” and there is a lot of that in our house with friends visiting, enthusiastic caregivers coming and going, even our plumber puts a kiss on her hand.
I too do my best to be cheerful. There are, however, some evenings when I sit alone facing our fireplace with a glass of something in my hand and music playing in my ear and, from time to time, tears flowing down my cheek. I’m not sure if I am feeling sorry for her or for myself or perhaps it’s just the music and the dancing flames. The other day I had a few moments of an actual crying jag, something I have not had in many years.
My wife was asleep and the caregiver and I were watching the movie Awakening, a story based on Dr Oliver Sack’s experiences in the 1940s. In his early days as a doctor he worked in a New York hospital for patients with incurable neurological disorders. His ward housed some 15 patients who had been catatonic since suffering an epidemic encephalitis some 20 years before. L-DOPA and dopamine were being investigated and Dr Sacks, portrayed by Robin Williams, convinced hospital authorities to have these drugs administered to at least one patient, played by Robert De Niro. In short, eventually all the patients came alive, moving around and recalling ancient memories, but then retreated to their catatonic states a short time later. It was a heart-breaking story, and I shed a few tears as it unfolded. Then I broke down in a loud cry at the final scene as the recently joyous De Niro lay on his bed, totally rigid in catatonia and senseless to the world, while the kindly nurse and his elderly mother fastened a diaper on him. I cried; our caregiver held me, tears perched on his face as well. I composed myself a few minutes later. The reality is that with all the grace, love, and laughter in our house, we use over a hundred diapers in a month.
—George Szasz, CM, MD
This post has not been peer reviewed by the BCMJ Editorial Board.