Today I read an article* that stopped my heart. It was about a seminar for caregivers of dementia patients. The topic: How brain damage from dementia affects behavior and how caregivers should respond to their patients.
My first impulse was to read it; my second was hesitation. What if I find out a lot of things I should have done but didn’t do? What if I made some bad mistakes with Bo? What if I have more regrets? Do I want to know?
Yes. Yes, I do because there are so many other people still taking care of their loved ones with Alzheimer’s or some form of dementia. Maybe I can pass important information to them through this blog.
I actually put the article down and didn’t read beyond the headline for a couple of hours, but when I picked it up again, it sent a bolt through me. It answered questions about perception that Jon and I had for several years: Why did Bo try to step over the flowers in the carpet or step up from the carpet to the wooden floor? Why did he pull back instead of following when Jon stood in front and held his hands? Why was he so afraid on the stairs? Why didn’t he see the dog sitting beside him?
Oh, how I wish I had known that …
“….the visual field [of the dementia patient] narrows considerably, especially when they are frightened. A 20-year-old ‘s peripheral vision can detect his moving fingers if he stretches his hands straight out to the side, but someone with mild-stage dementia can see only between two arms thrust straight forward. That means it’s easy for him to think someone is sneaking up on him. If you stand right in front of him, you block his full visual field, which can feel threatening. In other words, it’s best to speak from a distance and approach from the side.”
Looking back, I ask myself if I did this, not realizing what I was doing. I know that I usually talked to Bo as I approached. Or I often touched his back or arms with affection and maybe this helped. But I remember the day when Jon, Bo and I were sitting at the kitchen table and the dog came to sit by Bo’s left leg. “Look at the dog,” I said. “She loves you. She wants you to pet her.” But Bo didn’t even see her. He didn’t turn his head. He looked ahead and sort of mumbled. Jon also told him to look, but he didn’t seem to understand. Then I turned his chair so he was facing Emma. Now he noticed her. Jon and I talked about this later. Why hadn’t Bo turned his head to see Emma?
And then the article hit home as I continued reading:
“In later stages of the disease, the brain begins using visual messaging from only one eye, throwing depth perception way off and increasing the risk of falling.”
This was the answer. This was what we didn’t understand. We thought it had something to do with perception but didn’t know what.
Bo would often balk and refuse to move forward. Now I realize that as Jon or Cynthia held his hands in front of him, they blocked his field of vision, and as the article said, he was afraid of falling. This was particularly true on the stairs. But when Jon held his hand from the side, Bo moved forward.
August 13, 2015
I’m very glad that I can pass this information on. I will continue to look for other answers. There’s so much we don’t understand, so much we need to know.
(“How to Talk to Those with Alzheimer’s” by Stacey Burling, The Philadelphia Inquirer, Sunday, January 31, 2015, (Section G1)