A cure will be found for Alzheimer’s. I won’t find it. I’m not even looking. My mission is different.
I go to fundraising and advocacy events. Most of the talk is about finding a cure. It’s a great cause, a good goal. We give money so that people in the future won’t know Alzheimer’s. And I hope they won’t. I write my check.
And yet I sometimes feel like those who currently have the disease are lost in the shuffle. We may hold them up to other people and say, “We must cure THIS. We don’t want people to be like THIS.” They are our greatest fear. That are what spurs us to donate money to help find a cure.
But in all the fundraising and public relations work, we sometimes do little to try to understand the people with the disease. We can’t decipher their words, but we nod as if we can. We talk about them like they aren’t there, and then we speak to them like children. We scold them, correct them, make comments that imply they are stupid. We don’t stop to think what they might be going through. I hear, “Oh, it’s so much harder on the family,” and “Grandma doesn’t know what’s going on anyway.”
I know this disease is hard on families. I speak at caregiving conferences and support groups. I have family members eloquently tell me (sometimes with beautiful analogies) how difficult negotiating Alzheimer’s is. Some have even written poetry about the “long goodbye” or the “cruel beast of dementia.” It’s rarer to have a person with Alzheimer’s so eloquent in their description of what they are going through. Just navigating life with Alzheimer’s is hard enough. Most people with Alzheimer’s do not have enough left over to explain what it’s like to navigate Alzheimer’s.
I once heard a person say, “I have this Alzheimer’s thing. It’s a real catastrophe.” Then she lost her train of thought and started talking about something unrelated.
Family members have every right to complain about Alzheimer’s. But it’s not a picnic for the person diagnosed. Many times they act as if they are okay because they aren’t sure exactly what’s wrong. Nothing makes sense. Sometimes isn’t right. But they’re not sure what so they bury the anxiety inside and smile. If they tried to explain it, it wouldn’t come out right anyway. We wouldn’t listen. Or we’d make them feel stupid.
I gave a presentation once that focused on what it’s like to have Alzheimer’s. There are some fancy ways to simulate dementia, but I didn’t use those. I had people pair up, designated one of them to have dementia, and had the other pretend to be a caregiver. Usually, the person with dementia gets annoyed with the “care” that I prompt the caregiver to provide. And everyone laughs.
A guy came up to me afterward, and he said that his mom had been diagnosed with Alzheimer’s five years earlier. “In the last five years,” he told me, “I’ve never once thought about what it’s like for HER to have Alzheimer’s.”
He said, “No one has even talked to me about what she’s going through.”
We’re so focused on curing a disease that we often forget about the people living with it.