If only there were such a book, class, tome, video. Wrap it up, I’ll take it.
I can tell you what I’ve learned about dementia through how it’s affected my mom and me since that’s the purpose of all of these words. I can tell you how she’s changed; the things that would have started World War III such as touching her hair (dad and I both knew to NEVER touch her hair), her clothes, her shoes, her jewelry...she couldn't care less about that stuff now. Don’t get me wrong - she loves to get her hair and nails done but that’s where it stops. Her hair doesn’t get combed after her weekly appointment unless I do it. She just doesn’t see it anymore. She wears the same thing every day unless I help her change clothes or she has to change clothes where, just a few years ago, there were at least three wardrobe changes a day without fail.
But, what has dementia actually done to her? I don’t really know. I don’t know what she thinks or how she feels. I know when she’s happy or when she’s concerned or when she feels I’ve been critical of her - it’s easy to see. But what she thinks, that’s the real mystery. You and I, we think about things we need to do, work, that awkward moment yesterday (or ten years ago), conversations we’ve had. Mom, I think, is driven by the “now” much like an infant would be. She seeks out company, wants to be comfortable, wants to eat when she’s hungry, drink when she’s thirsty, and take care of bathroom needs. That’s about it.
I was telling a dear friend of mine that being around mom is like hanging with a 79-year-old conspiracy theorist with the operating capacity of a mentally challenged three-year-old. I add in “mentally challenged” because, unlike a three-year-old (or at least the ones I had), she can’t be bribed. I can’t change her behavior by promising her anything that’s more than a couple of minutes out since she’ll forget. The conspiracy theorist part I have to chuckle at; whenever I stop by and find her talking with one of her friends it’s always something along the lines of “we’ll have to keep a watch on things”, “there are things happening that we don’t feel too good about”, or “ we can’t talk to ____ because she’s just not all there”. When I ask her what’s happening or what she needs to watch, she can’t tell me. She just smiles and says something like, “well, you know how it is”. Yep, I do (not).
The books and blogs I’ve read and the videos I’ve watched have been helpful in that they explain certain behaviors and how to address and deal with them. But there is no solid progression here, there’s no answer to “why”. Whether I’m asking the universe why this had to happen, or I ask mom why she has sixty styrofoam cups in her room, the answer is: I don’t know.
I think we have a need to know we're not alone. To know that someone else is going through something similar is comforting, even if you don’t necessarily commiserate. On Easter Sunday I was up at mom’s place and ran into some of the other “kids” like me. I don’t know their names but I’ve seen them occasionally. We always do the requisite “how are you?” with the answer of “fine”, but on this day I got “lucky”, and “ok, but you know, this is hard. This is the hardest thing I’ve ever gone through and some days, well...it’s just tough”. My answer to the first one was “no kidding” and my answer to the second? Yes, it’s hard. How old is your mom? He answered that she is 92, I told him mine is 79. He asked if I had any brothers or sisters? Nope, I’m it. He replied that he has a brother on the east coast but he can’t really help so he’s essentially it, too. Looking into his eyes I could see it, that slightly pinched look that comes with being weary and responsible and yes, sad. Happy Easter.
Having a parent with Alzheimer’s or dementia or living in skilled nursing or assisted living is hard but it’s not awful. Having a sick child, being diagnosed with cancer, wondering how you’re going to pay the bills - there are worse things than what I’m dealing with. But it’s all relative, isn’t it? Yeah, I’m having a crappy day but hey, high five! It could be worse. It could be raining.*
*Young Frankenstein, Mel Brooks 1974