Today was a terrible day in America. I’m sad, angry; I feel helpless. I think I was grumpy when I woke up this morning. Things did not improve.
Mom Zoomed with her Wednesday Breakfast Group this morning. I stayed in my room but I could hear her laughing. It’s a good sound. It’s always just her and I, her and I. No one else. So when she can spend a couple of hours chatting with friends on a Wednesday morning it’s a good thing. I’ll be glad when they can gather in person again. She will be too. Zoom is a poor substitute for in person meeting, but way better than not being able to get together at all.
After lunch we did her physical therapy exercises. They’re good for both of us.
After PT we went to Costco. Always something or other makes itself into our cart that wasn’t on our list. Today it was “Keep Sharp: Build a better brain at any age” by Dr. Sanjay Gupta. Mom is always reading something or other in a newsletter, magazine, or the newspaper about things that improve brain health. It was no surprise she wanted this book. Plus, I think she has a bit of a crush on Sanjay Gupta.
In the book there is a 24-question self-assessment that may indicate possible brain issues later in life. Mom said yes to 13 of them. Dr. Gupta is careful to say that just because you answer yes to some of them doesn’t mean you’re doomed to Alzheimer’s or some other dementia. Still, 13 of 24 doesn’t seem like a promising number. I didn’t do the self-assessment myself but I imagine I’m up there, too.
While she was re-reading the questions to me (she read and reread several bits of the introduction to me as if she hadn’t just got done reading those bits to me) I asked her if she was afraid she had Alzheimer’s. She said no. She said, “I think I would have got it by now if I was going to. After all, I’m 85. No, 86. I’m 86, aren’t I?”
What happened in America today was huge news. 9/11-level news. History making news. Mom did not remember. She would watch the day unfold and the reporters would go to commercial. I would comment on something we’d just seen and she wouldn’t know what I was talking about. I mean, seconds later! This wasn’t some fly by night news story she wasn’t paying any attention to. This was non-stop coverage from every angle with photos, videos, and interviews. There was a SINGLE news story on today. And once the commercials came on she’d forgotten it ever happened.
I think I go on and on about her forgetfulness especially, but also all her other “symptoms” because I’m trying to figure out what is going on. Does she have dementia or doesn’t she? I think she does. But I’m no doctor, am I? What the fuck do I know?
A couple of years ago, just before she got put on Donepezil, I decided that it wasn’t important to me if she had a diagnosis or not. As long as I took care of her best I could, she was safe, well fed, clean, and happy, we’d be just fine. Sure, I knew there’d be problems, but I wasn’t worried. We could address things as they come, and besides, there’s time. She could live another 20 years!
She still could live another 20 years. But she’s declined dramatically in two years. The onset of the pandemic didn’t help. She is a long way from needing residential care. She’s probably a long way from needing the type of in home care I can’t provide. But someday she might need either or both. Someday I might not be able to keep her safe, well fed, clean, and happy. She’s going to need a diagnosis.
Perhaps I can be kind to myself and allow that I’ve grown, learned, and changed over the last two years? Does that forgive my ignorance? My arrogance?
In any case, I’ve decided I need a diagnosis. I need her to be able to get the kind of treatment she needs should she need it. I need her in memory care, not general pop at a nursing home. I need the police to have her picture and identifying information should she go wandering. I need a reason besides “I’m tired” to get home health care or hospice. As I said, we’re a long way from needing any of those things (so it seems today) but when the time comes I doubt I’m going to get long-range warning such that I can line all my ducks in a row before some explosive thing happens that sends us both spinning.
I got online a few days ago looking through the providers for mom’s insurance for a geriatric doctor. Guess what? There are none. I looked for a neurologist. All of them deal with stroke, seizures, or pediatrics. Frustrated, I went to the online support group and asked for guidance. One suggested I look for a psychoneurologist, and I kind of remembered seeing something like that in the list of providers. I went back to the search function and ended up with a different list of providers. Still no geriatric doctor, but I did find a neurologist. There’s one! One neurologist in the area that works with dementia.
Mom has this thing where she asks every night what’s going on the next day. Almost always its, “chores.” Yeah, that’s how exciting our lives are. But tomorrow she has a physical therapy appointment. She asked what time the appointment was. I thought, “Okay, so she doesn’t have dementia, she has age-related memory loss. Let’s treat her like that.” So my response to her was, “look it up.”
That launched a back and forth of her trying to figure out how she knows when her appointments are, where she would keep appointment cards, if she had an appointment card for this particular appointment, what a calendar is, where the calendar is when I said, “It’s under that pile of papers next to you.”, what the date is tomorrow (July? No. June? No. What’s the date today? It’s January 6. Oh, that’s not June or July. Nope, it sure isn’t.) Always we’re a long way through these exchanges before I remember to record them. By the time I get my video going we’re well past the worst of the confusion. But that did trigger an important point. I should document these things. I should have written documentation, but also video documentation of mom’s confusion, in ability to problem solve, memory lapses, and otherwise thinking errors that I don’t think are age-related but rather, dementia. The doctor needs to know more than my hastily assembled recounts of months worth of odd behavior. The last thing the doctor is going to do is wrench open her skull and go, “Yep, look at all those dying neurons. She has Alzheimer’s alright.” I need evidence.
So I’m putting off making the appointment. I’m going to work on getting better at videoing her cognition problems. I’m going to write down dates, days, and times of weird incidents that I think are dementia and not normal aging. I’m going armed into that neurologist appointment and I’m going to get a diagnosis one way or the other. She has dementia or she does not, but I’m going to find out for sure.