Most episodes of “bad behaviour” my father displayed during his years with Alzheimer disease had a cause that could be figured out with a little detective work.
One evening, he awoke from a snooze on the couch and seemed confused. He put on one slipper but not the other and proceeded to clomp around the house. It was well after nine o’clock, my mother was away, and I wanted him to go to bed because I was tired after another day of taking care of him on my own.
My father began to go back and forth to the bathroom; he would go in but come right out again. My patience was wearing out and he was becoming agitated. I just wanted him to go upstairs to bed.
We ended up standing nose to nose in the living room and my father snarled, “I’m going to push you down the stairs.”
This was so unlike him, even inside this disease, that it snapped me out of my tired impatience. Yet I was beyond being able to play detective so I called my mother in Georgia, where she was visiting her grandchildren, and told her what was going on.
“If he’s going in and out of the bathroom but not using it, the problem is there,” she said.
And she was right. So very simply, wisely right. The toilet seat was down; without a hole visible, he couldn’t distinguish the toilet from the floor.
This always has stood out as a Big Learning Moment and it was driven home to me last week at the Alzheimer Society of Nova Scotia’s 24th annual provincial conference. I attended the conference as a presenter providing a family caregiver perspective but I benefited greatly from what the medical experts had to share.
One in particular connects to my story about Dad and the toilet. Dr. Sameh Hassan, an assistant Professor working in the Department of Psychiatry at Dalhousie University, started out explaining how eyes and ears and muscles age. I wondered what on earth all this physiology had to do with dementia care? It turns out it has everything to do with it, including the answer to why my father couldn’t see the toilet.
This is how our eyes age: They don’t take in as much light, they don’t adapt as quickly to changes in light, and the eye muscles weaken. All of these symptoms are worse in someone who has dementia.
According to Dr. Hassan, there are two major issues we need to address when providing care for someone with dementia: Contrast and Lighting.
Contrast was my father’s problem. His eyes’ inability to see the delineations of lines and shapes meant he couldn’t distinguish the white toilet from the white floor. Don’t make fun of the wood toilet seat! It provides the right kind of contrast.
Think of the doors in your house. If the walls are light, and the door is white, a person with dementia can’t see where the door is. We experienced that in the first nursing home room my father was in; with grey walls and door, he was never going to know where the bathroom was because there was no contrast.
If you know someone in the early stages of dementia who is complaining that something is wrong with his or her glasses because they are having trouble reading the paper, it’s not the glasses. That’s normal aging coupled with the effect of dementia. The connection that’s made in the brain between what is seen and what it means is broken. It’s more of a comprehension problem.
Here is my biggest takeaway from this conference: This information is out there, the resources are available but they aren’t getting to the newly diagnosed and their family early enough, or at all. We need to receive all this insightful information but we also need to ask for it. We know what’s going on; it’s knowing why that makes a difference.
Dementia, and caring for someone with dementia, is never going to be easy. But it is possible to make it easier.
Call whatever phone numbers for an infoline or caregivers outreach number you get your hands on. You will connect with caring, knowledgeable, compassionate people who want to help. Even if you just want to talk, someone is there to listen. And you never know what you will learn.
Check out this link to the "dementia-friendly" washroom designed by the Dementia Centre at the University of Stirling in Scotland: http://www.dementia.stir.ac.uk/sites/default/files/ensuite.swf
* a WC = water closet in the UK *
The Dementia Centre has designed both a dementia-friendly home and a dementia-friendly hospital. Innovative and forward-thinking. http://www.dementia.stir.ac.uk/design/virtual-environments