Basic guides for relatives of people with Alzheimer’s say, “Don’t get upset about what they say or do. If they lash out at you or don’t remember you, it’s the disease talking. It’s not them. Don’t take it personally.”
I can appreciate that advice and I’ve tried to follow it. Though it’s hard to watch someone acting violently or hatefully, and tell yourself it’s not them. Because it sure looks like them. They are living in the same well-beloved body you remember. I try to think prosthetically. If they were twenty years old, with a fever of 104, it might well be the disease talking then too. I want to have the same patience now that they are ninety years old.
But I have some questions about that theory. I think we take the easy way out when we assume that all uncomfortable behavior is caused by deterioration in the brain. When my grandmother got angry, it was for the same reasons that she got angry when she was twenty. Not remembering that you are in your own home – that’s a sign of disease. Feeling lost and confused when you don’t remember where you are – that isn’t a sign of disease. That’s a normal human reaction. We need to help our loved ones who feel lost, by not moving things around and maybe by not moving them around.
But I wonder how often the negative emotions that appear during an episode of dementia are simply emotions that have always been present but hidden. My great-aunt was a Pentecostal preacher, a warm and sunny lady, with purpose and victory in her life. When the symptoms of Alzheimer’s appeared, her faith didn’t disappear. Her essential character didn’t change. She continued to be polite, saying Thank you when she couldn’t say much else. She didn’t begin cursing or lashing out at her family. I’ve heard of religious people who did, but we all know that sometimes religion changes you deeply and sometimes it doesn’t. One daughter said about her father, “His faith has helped him to be happy through AD. I think my dad will always have that in him…bet it will be the last to go.”
Alzheimer’s disease does change you, but not all at once. It takes humility to admit that maybe it isn’t the disease that makes me act this way. Maybe I really am this way. It’s easier to fix character flaws before the symptoms get bad.
Now, before I get any more forgetful than I’ve been all my life, I’m making a resolution. I resolve to remember that I am not perfect. I can get very high scores on standardized tests, but my mind was never perfect. If someone contradicts me, I want to remember that they might be right. I want to learn how to find peace even when I don’t know where I am.