Ruby, who is deaf and talks loudly, can't bring herself to touch the paintbrush to the white paper. Lillian draws the same three shapes every week. Christina's paintings are good but she uses only a quarter of the paper and finishes long before our 45 minutes is over. Ken came one week and joked and smiled while he painted a river and a field and trees; the following week, he sat for two minutes before declaring himself bored and got up from the table and walked away.
I'm used to Alzheimer's moments like that. Ruby and Ken and Lillian and Christina live in Blacklock, the secure unit of the Golden Plough Lodge in Cobourg, Ont. They have Alzheimer's disease and in the spring, responding to some urge I can't quite remember, I decided to get them painting. In part, I suppose, because this unit tends to be ignored by the rest of the nursing home staff, some of whom seem to believe that people with Alzheimer's are difficult, can't do anything and need to be locked away.
That's a crock and nothing brings out my fierce protectiveness more than ignorance about Alzheimer's disease. I have been visiting the secure unit at the Plough since last December when my father, diagnosed with the disease in March 2002, became a resident. Moving my father into a long-term care facility was the most heart-wrenching decision I've ever faced (I still cry every time I leave the building) but his personal care became more than we could handle at home.
As his world shrunk to fit this L-shaped unit with 19 other residents, my world opened up. That's how I think of it: this unit, this nursing home, is an extension of my own home, an addition to my life. I like these people. They are interesting, unusual, even fascinating: Ken was a deep-sea diver in the Bering Strait. When we first moved my father in, I spent six hours a day with him and I quickly came to know the residents by name and by traits. (Josie likes to be complimented about her hair; Jean was a nurse and tells it like she sees it; Gordon always worries about where his car is parked.)
One evening after dinner, I gathered everyone into the large TV lounge to watch one of my father's favourite shows, The Rita McNeil Christmas Special. I sat amongst these older people I had known a mere week and I thought, "These are my people now. This is my new family."
The nursing home we chose for my father is not the best one; it is not modern or well-laid-out. Funding is a problem and there have been staff cutbacks since we arrived. There isn't enough consistency with staff on the Alzheimer's unit and we believe the personal support workers are not adequately trained for this unique disease. It frustrates me when some staff don't seem to know even the basics -- approach from the front so he can see you, give one instruction at a time, only one person speaks to him at a time, the voices on a television can confuse and frighten. But the nurses are caring, the facility is quiet and doesn't smell, it is less than five minutes from our house and it has a chaplain, David Janzen, on staff.
Although ordained as a Baptist minister in 1969, David spent most of his ministry in a multi-faith capacity as a chaplain in a prison, a psychiatric hospital and with the Province of Ontario. After his retirement, he began working three days a week at the Golden Plough. When we first admitted my father, David spent his day off with us. Since then, his presence has been a source of strength for my mother and me, and for my father.
My father's swift decline presents challenges to most people, especially friends who have known him all his life, but David faces them without flinching. "When I approach him, I make the assumption that he senses something of my presence," David says. "So I want to let him know that I am not afraid of his disconnectedness, that it's okay for him to be the way he is -- holding up his pants, looking at the floor, saying a couple of mumbly words. I can't be afraid of that."
"I have to be able to hug him, whether it's physically or emotionally, to say, `It's okay, Reg. It's okay to be just as disconnected as you must feel.'"
For us, the presence of a chaplain who is not afraid to face the darkness of my father's disease, who sees light in him even as he fades away, is a godsend. We can't help Dad physically but with David's example, we can still nurture his spirit. With his ability to communicate now limited to bursts of aggression or the rare smile, there is little we can do for my father beyond feed him his meals. So I turned to the rest of my Blacklock family and decided I could give them something to do; they are quick to recognize their name on the canvas.
Sometimes, on a good day, Dad will sit in a chair near us, close to me, and I get the sense he understands that for me, part of caring for his spirit means caring for mine -- and creating new memories out of Alzheimer's moments.
Sara Jewell is a Nova Scotia-based writer and journalist.
