pre-diagnosis blues

Stuck in this never-never land of no diagnosis…I know something is terribly wrong…doctors are starting to listen to me, as I can point to the late credit card fees…and the week I missed teaching because I was too confused.

Most of the people I talk to want to deny that there is something wrong with me. And I know it is out of kindness…it is out of caring for me. They don’t want to think that I have dementia…that I am going to continue to decline…but it leaves me completely alone with nobody to talk to about it.

Like, how long will I remember who I am? How long do I have to, say, go on a nice vacation and have it not be a complete waste of money? How long will I be here for my daughter…now 17? Her grandma just died (her dad’s mom)…my kid feels so alone in the world. Her dad is lost in a world of unbearable chronic pain. And I can’t blame him for not being there for her. You can’t imagine what it’s like if you haven’t lived it.

And now, I’m getting lost in my own brain. I don’t know why I expected to be around for a long time…I guess statistically it was a decent bet…but with dementia breathing down my neck, how long will I be a parent to her?

My brain problems don’t seem to be Alzheimer’s…seems more likely that this is Lewy Body Dementia…I hadn’t googled that condition specifically, because for a long time, I just thought I had Parkinson’s Disease. I knew there were a bunch of parkinsonian conditions, and I knew that Robin Williams was found to have LBD, and that it sucked out loud. Now when I read about LBD, it feels like home. It feels like me.

And it’s hard not to pay attention to the prognosis…tends to be worse and quicker than Alzheimer’s…but apparently the medical world is not all that up on Lewy Body Dementia. And a younger age at diagnosis gives me a potentially better prognosis.

And of course, I have no fucking diagnosis whatsoever, for the moment. So I can’t claim to be a member of any goddamn group.

But bless their hearts, the Alzheimer’s Association does not discriminate…they sent a woman out to my house, and she has all kinds of information and help to offer me. She does not require a diagnosis, and she doesn’t care what kind of dementia a person might have. She is here to help people with early-onset dementia, and I don’t have to prove anything to her.

She doesn’t tell me about the times she loses her keys and finds them in the fridge, or walks into a room and forgets why, or forgets somebody’s name…I know everybody has these kinds of things. This is way different. This is all day long. This is getting lost in a neighborhood I know. This is having to check several times to make sure I put the car in D, and not some other thing, such as R.

Yep I’m still driving. How long, I have no idea.

At least I can write this here, and I’m not being a burden to anybody I love. So, if you’re reading this, thanks to you, for being there.