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.





wishing to die

I have been saying things like “I don’t want to die, but…” or “I’m not suicidal, but…”

But nothing.

I want to die. I am suicidal. This pain is unbearable.

But I am a single parent. I’m in no danger of hurting myself, because there are things more important than me and my pain. Things like my kid.

Life hurts too much and is too confusing and I am scared all the time. I am scared to tell anybody how much this hurts because I don’t want to share this burden with someone I care about.

I am scared about money because the wealthy mother prefers to take it all with her.

I am scared about ending up alone because I am a fucking basket case in a new relationship. In a new town, in a new state. With a teenager who didn’t want to move, who doesn’t like it here, and who has no other family but me.

I miss being able to paint. But when I try to create art, nothing happens.

I miss getting into a good book. But I have no focus.

I miss laughing. I miss being there for other people. But I have isolated myself so well and for so long that I could go weeks without leaving the house and nobody would notice, except BF. And what a fucking burden this for BF. And I can’t level with him about this…wtf is he going to do with that information?

I think of soaking in a hot bath and just opening a vein…letting go of everything. Pain. Guilt. Despair. Loneliness. Fear. Conflict. Sweet release.

But there shall be no release for me. How fucking selfish would I be, to leave my kid that kind of legacy?

So I don’t know. What’s next? Cry myself to sleep? Wipe my tears, have dinner with BF, pretend that I’m kinda sorta OK?

I have had depression all my life. But I am 55 years old and I have never felt anything like this before. Nothing that lasted beyond a terrible night or so. This is ongoing. It never lets up.

Last week, I called as many people as I could think of, to try to reach out and feel less lonely and I don’t know. It kinda just made me feel worse.

Holy fuck, what a disaster am I.




losing my footing

In most ways, and according to doctors, I am too healthy to worry about whether or not I have Parkinson’s. I am too healthy ohysically, that is.

The changes in my brain are what concern me. I can’t get a doctor to pay attention to my cognitive deficits, even though I am gently losing my ability to take care of my business.

I can see how married people lose more of themselves before noticing. Over time, the spouse takes on more and more responsibilities, and things just kinda keep going. Not so great maybe, but the changes are gradual and can go unnoticed for a long time.

What about single people?

How do single people keep living their lives when their brains start behaving strangely? How do they continue to pay their bills…their taxes…how do they remember to bathe and feed themselves?

I am not so single that I’d fade away without anybody noticing. BF would notice. BF takes me to the grocery store and heats up leftovers and reminds me to eat real meals when we are together. And we are together more days than not.

I feel conspicuously damaged lately, but BF seems not to mind my brokenness too terribly. I think my bad depression days scare him (they sure as shit scare me) and I worry about the damage to us. And my ability to measure the things in my life is fucked. Part of me is always scared.

Scared I f what, I can’t say for sure.

Scared of being alone? Possibly. If I end up truly single again, I might never leave the house…I might subsist on spoonsful of peanut butter…I might go weeks without seeing another soul…I might never wash my hair again.

Am I scared of the pain? That feeling of emotional decimation?But that’s silly. Those feelings really don’t last that long. Do they?

I am scared of ending up alone in this strange place. But the thing is, I was alone in the last strange place too. It was more familiar because I’d been there longer, but it was never home.

My internal landscape is shifting beneath my feet. I can’t keep my footing, literally or metaphorically.

Yes. That sounds right. Losing my footing.