I’ve said that there will be times when I’ll write here about serious topics, now that my mom is in the nursing home. There’s no more serious topic than the many difficult decisions that are an unavoidable part of being responsible for someone with Alzheimer’s. I want to write about something a lot of family members who are caregivers have to face and I wish so much that I’d known about it before I slammed into it head on. If even one person reads this and it helps them face the unthinkable, it will be a blog post well spent.
Of course, having to put her in the nursing home was awful. That’s the first big decision hurdle. For some it ends there. The parent you’ve had to parent for so long settles into their new reality, which makes their life and yours better. Visits are difficult, but not horrible, and the awkwardness and even dread get better. The disease progresses, you endure, and it eventually ends everything.
There’s another side to Alzheimer’s I didn’t know about, until I was blindsided by it. Along with the symptoms we all hear about from the news media, movies, and relatives dealing with it, this unexpected side is unimaginable until it becomes harsh reality. It turns out that when my mom was even worse than what I’d thought was almost (I say almost, because unlike so many she always knows me,) as bad as it gets, I had to learn fast about the darker side of Alzheimer’s. Not all, but a surprisingly high percentage, of Alzheimer’s patients develop psychosis. There are hallucinations, delusions, aggressiveness…traits that were the absolute opposite of this amazing, wonderful woman.
She was admitted to a geriatric psychiatric hospital for behaviour treatment and medication adjustment. This step is incredibly shocking to a child caring for a beloved parent. I had to go to a treatment team meeting,
where her wonderful doctor explained how they planned to help her and answered questions. He wanted to put her on Alzheimer’s meds that he said he’d seen good results from. He also told me these meds came with Black Box Warnings, and that I should familiarize myself with them and ask any questions I needed to. I said I knew about Black Box Warnings and that I thought under the circumstances it was worth the risk. He agreed. She had no quality of life as it was, so a chance to slow down the progression of the disease and alleviate the scary psychosis was a potential gift.
When I got home I hit Google to look into the situation more deeply. These Black Box Warnings were even more dire than I’d realized, with the worst of the possible risks being death. Still, all things considered, I felt it was better to give her a chance to have even a little more quality of life. I worried, but held firm in my conviction.
I’m so glad I did. I just got home a little while ago from a wonderful visit. I sat with her and showed her pictures I’d taken with me of birds and animals. She oohed and ahhed, and we both enjoyed our time together so much. We talked about all kinds of things…the weather, my writing, how to cook asparagus, even current events. Even at such times I’m always thinking about what I’ve learned that make things easier for us both, like being careful about overstimulation, signs she might be getting overwhelmed, keeping things simple and not throwing too much information at her at a time. There are times when I’ve seen all of that occur and adjust our visit accordingly. Today, and for quite some time since the meds did what they were meant to do, I saw none of it. She was the sweet, funny, wonderful person she’s been for nearly a century. For the time I was with her, I had the best mother in the world back.
I’m not saying she’s perfectly alright. She still has Alzheimer’s and will until it finishes it’s terrible course. They took her off a couple of the meds recently over some blood pressure issues and I was really worried that the improvements would end. So far that’s not happened. They’re intended for short term use and the goal is a slowing of the progression and easing of the more severe symptoms. There’s no concrete timeline with this illness. And there’s no timeline for how long the improvements from the meds will last. I could have these wonderful visits for a few years or the progression could resume at any time. As with everything else involved, I have to take it a day at a time. Be strong. Be resilient. Be her advocate. Be her child who carries the responsibility of a parent.
That responsibility is terrifying. It was such a difficult decision to agree to medication that might kill her. But the smartest thing a caregiver for someone with Alzheimer’s can do is arm themselves with knowledge, with compassion, and with wisdom. I’ve had so many medical professionals tell me the importance of quality of life over quantity of life, when you’re forced to make vital decisions about the care of someone you dearly love, as their life closes down. Those decisions may come frequently and be terrifying in a rapidly escalating manner. My goal has become making whatever time she has left to us the best it can be. Choosing the Alzheimer’s drugs turned out to be the right decision. If they had done their worst, I truly believe it was still right to take the chance that they might do their best.
I’m making the decisions I believe she would make for herself, if she could. And for now I’m cherishing the memories of these brief, golden days when I can experience moments snatched out of time with the mother I remember and love so much. Each one is a gift for both of us, even though I’m the only one who remembers them the next day.