Unforgettable

My mother has shown signs of “sundowning,” which is a peculiar behaviour in some people with Alzheimer’s. The name is apt; when the sun disappears, the change in light can trigger confusion and agitation in the brain. I noticed this in my mother during the last months of winter. At around 6 p.m., she would start to become restless and uneasy, a bit “clingy.” I assumed it was because she didn’t want me to leave, having become dependent on me and our other caregiver.

But then I started getting calls from my father in the evenings around 8 or 9 p.m. According to him, Mom had completely “lost it” and he felt helpless. These calls ended up with me going over to assess and reassure both of them, while feeling a little helpless myself. It’s genuinely scary to watch your Mom talk gibberish, walk in circles aimlessly, pull at her clothes as if they offend her, and push you away when you try to help; she was lost in Alzheimer’s World and I couldn’t seem to get through to her.

Shedding Light on Alzheimer’s
When I stepped into the role of caregiver to my parents three years ago, one of the first things I did was start reading everything I could about dementia and Alzheimer’s. I was happy to find out that the Alzheimer’s Society of Laval offers a course in English, and immediately signed up for eight evening sessions that cost me a mere $50, but were absolutely priceless. It was the first time I was able to interact with other caregivers, as one benefit, and it was the first time I realized how many mistakes I had been making.

All this to say – it was only because I took the course and have been following some savvy bloggers that I even thought about sundowning or UTIs (urinary tract infections) which can both be the cause of high distress in people with Alzheimer’s.

The solutions are so simple: In the case of sundowning, the best thing to do is flood the house with light at dusk, distract the person from what’s going on outside, and initiate a calming practice such as meditation, music or art therapy, quiet conversation (even if it’s one-sided) or reading to them from an inspirational book. Nothing overwhelming or taxing, nothing loud or overly stimulating.

How hard is that?
This new ritual has now become a scheduled part of the evening routine, whether it’s meditation, quiet reading or music. My Mom seems to welcome it, and responds well. As with any other Alzheimer’s intervention, it has to be regular and reliable. And I’m happy to report that the agitated behaviour has, aside from an occasional upset, completely disappeared.

We now take my Mom’s temperature every day, too, to rule out UTIs, recording it on a wall calendar that everyone can consult. That’s easy enough, and if ever an infection rears its ugly bacterial presence, this should alert us before it gets out of hand.

Astonishing as it seems….
None of the caregivers we’ve employed so far knew anything about UTIs or sundowning. None of them were formally trained in Alzheimer’s behaviour, or knew about these simple solutions. I’m sharing everything I learn with our hired caregivers and every member of my family, as well as you, my blog readers. And I’m wondering out loud, right now…. how many people with Alzheimer’s have been mistreated and abused simply because someone didn’t know or care enough to know? How many people with Alzheimer’s have been treated with heavy-duty drugs because no one knew about preventing and eliminating these triggers? Too many, I suspect.

Be informed. Question everything.
Put all the lights on, in your head and in your heart. Choosing to stay in the dark about these challenges is the worst-case scenario for everyone involved. The more I learn, the less despair I feel. Alzheimer’s is not a horrible life sentence, it’s not a terrible affliction and it’s not the end of the world. It’s an opportunity to learn compassion and patience, and to practise love in a way you never believed possible.

“It takes considerable knowledge just to realize the extent of your own ignorance.”
– Thomas Sowell