I've been writing less the past few years, and with my mother's permission, I'm going to write a bit about one of the reasons for that. She was diagnosed about a year ago with Lewy Body Dementia. It's a new challenge for our family, but in some ways, it feels familiar. Janey's autism has prepared us in some ways for this new phase of our life.
I'm no expert on Lewy Body Dementia (LBD, I'll call it for a shortcut), but here's a few things I've learned. It's the 2nd most common cause of dementia. It's related to Parkinson's Disease often---my mother was first diagnosed with Parkinson's Disease Dementia, and she has some features of Parkinson's. It affects people differently than Alzheimer's Disease in some ways. For one thing, it's much more variable. Some days, she seems barely affected, other days, much more so. It affects speech and memory less than Alzheimers, but affects other areas much more. For example, she cannot understand time at all any more. She often thinks it's day when it's night, or vice versa, and something like telling her we will be there to visit tomorrow is beyond what she can understand. Anything that takes any steps at all to do, like cooking or cleaning or even the things she was always the best at, like reading or playing the piano, are near impossible for her. And she hallucinates a lot---one of the hallmarks of LBD. Almost every night, the house is filled with people that only she can see. She often makes my father whisper, as to not bother the visitors. She is very, very anxious. A lot of this is focused on their cat---worrying where the cat is, not wanting to leave the house even for a minute as to not upset the cat, etc. There's more, but that gives an idea what is going on.
As she starts to require more care, I'm often torn in two. I can't do all I wish I could do for her, because of course Janey needs me too. Tony is a wonderful caregiver for Janey, but he can't do it alone. We are visiting Maine much more often, just to check on things and to give my father a little break, and I call them several times a day, but even if their needs become greater, I'm not going to be able to do as much as I am sure many people do for their parents in similar situations.
There are some parts of the dementia that are easier than they would have been if I hadn't been Janey's mother all these years. Cognitive impairments are not hard for me to see. I don't mind the days my mother has trouble talking, or when she gets confused. I don't mind repeating things, or explaining things carefully. She is able to tend to self-care things mostly still, but if she stops being able to, that is also something I have experience with.
I think the part that is harder for me, though, is seeing her regression. That can bring back the hardest thing I've ever experienced---seeing Janey lose the skills she had before she was 3 and never get them back. My mother was accepted to Harvard (Radcliffe, then, although she chose to go elsewhere). She was a professional musician, and she read day and night, ran a successful business for years, had the energy of ten people. And that is all ebbing away. It is heartbreaking to see, in many ways, as it was heartbreaking to watch Janey lose her language as a three year old.
To say I feel a lot of stress lately is putting it very mildly. A pet peeve is reading articles about what you can do to avoid dementia later in life---something I want to do, obviously. They all talk about avoiding stress as being so important, as well as getting enough sleep---as if those are thing that are within my control as a parent of an autistic adult.
Something I think so often (as Tony can vouch for---I think he's sick of hearing it), something all this has taught me---is to enjoy the now whenever possible. When Janey is having a good day, when my mother is having a good day, whenever I am able, I do things I like and don't feel guilty doing so. If we have a choice between planning for some big goal in the future or doing something to live in the now, I pick the now. I am so very aware that the now is all that is guaranteed.
I will write more about Janey the next time I write. She will be 21 in less than two months. We are approaching the "falling off the cliff" age of 22. So there is a lot to think about there. But for now, I'll leave you with this picture of Janey from our trip a few days ago to Maine, to see my parents. I love being in Maine in the summer, and sharing what that is like with Tony and Janey. Thinking as always of all of you.
