There are times when I think I might be a good teacher. I can be excited about a topic and want to share what I know about it. Ask me about dinosaurs or bees and I'm going to assume you are a sponge to soak up all the info I'm about to share. Ask me about Alzheimer's and I'll do the same thing but with a different tone.
I find a lot of people don't know a lot about Alzheimer's and they are uncomfortable talking about it. I chalk that up to people being generally uncomfortable discussing terminal diseases, death or disability. Sometimes, I get the feeling that they assume that I'm uncomfortable and they're afraid they're entering into an emotional minefield. I assure you I'm completely comfortable discussing Alzheimer's.
It is an interesting dance to watch as people who are not directly impacted by Alzheimer's try to figure out what is safe to ask and what is not safe to ask. I try to keep the tone of the conversation casual and informative without being a downer. It is important to let people know that Alzheimer's is terminal and to acknowledge that physical, mental and emotional decline are all part of the disease. I try to buffer these crucial points with highlights of amusing stories so that there are moments when people can feel safe in smiling or so they can recognize that humor is still part of the equation.
Yesterday's moment of casual education came about as a result of a conversation which started about bees. I mentioned we have an out yard on the edge of the Potomac River and we want to move to that neighborhood within 5 years. We like the area and know of several homes with in-law suites. I was asked why that was import to us and I replied that "when my sister passes, we want my Mom to come live with us but have her own space." My colleague was floored at the phrase "when my sister passes." He indicated that he "knew she has Alzheimer's but didn't know she was otherwise ill." I quickly realized he didn't know that Alzheimer's is terminal.
He didn't realize that Alzheimer's was a progressive or degenerative disease. He thought that Alzheimer's patients just didn't remember everything anymore but that they pretty much stayed the same after that. We work for a software firm and I was quickly able to explain that having Alzheimer's is like when the CPU of the computer is starting to fail and you find that the drivers start to fail as well or other portions of the computer stop communicating with each other properly. With computers, we can swap out components and limp along for a while. We can reemerge the machine and get a bit of a do-over. With humans, we cannot. If our brain is failing and if the brain controls everything else in your body, then the body is failing.
The conversation wasn't upsetting nor a downer. It was a moment of casual education and my colleague has a little more knowledge today than he did yesterday.