Dementia is like any ride. It zigzags, your eyes widen, you don't know where you are and then I'm assuming just when you decide to open your whole heart and go with it, your person dies.
This is if it goes well.
If I didn't have to be a person, daughter, witnessing the long demise of this crazy usually energetic lady that I've known since birth, that I've seen so many cycles of, the young child cycle, the tragic divorce cycle, the dance party cycle, the boyfriend carousel, the booze hound, the rehabber, the nurse, the divorcee again - but if I wasn't the daughter it wouldn't matter, there'd be no gravity to the ebb and flow. I had to be cast as the daughter.
The last time I felt like myself was in a hotel room in Pittsburgh three years ago. That's the day before we got to Maryland, and I knew my mom would belong to me, in my care. It's coming up to the three year anniversary of that date, and I feel the weight of that moment. I knew my life would never be the same. My youngest kid was 13 and momentarily done with being mothered and I had kind of a breakdown knowing the caregiving I would now have to dust off and be shoveling up and aiming at my mother. I knew I was good at it, (I said on the phone at the time, crying to my functional parents in LA) but did I want to always be doing it.
Before Pittsburgh the last time my life was my own was in a little lake house in Florida, when I was 9 months pregnant. Then came Nathan and the snowballing 20 year child raising blur.
Before Nathan, the last time I left my former self was meeting Barry, at 25.
Before that, going off to college at 18.
Before that moving to Maryland at 13.
Before that losing my dad in my daily life at 9.
Before that? I'm guessing BLISS.
All of these me's that have been, if we do some tallying, most everything that mattered at all involved giving everything and then with empty pockets, turning them inside out and then just taking off the pants and throwing those in too. The only things that have turned out well are the people I gave my whole heart to. Or the pieces of my heart I could share anyway.
I haven't written in awhile so my brain feels covered in graffiti, WRITE THIS, wait there's THIS but I guess what got me sitting down here today was that this ride with my mom and her new habit - her eyes widen now, at this point in dementia, it's like the more she loses of her frontal lobe, the more her face seems to break off from itself, and the current thing is these wide eyes suddenly. Like What Is Happening eyes. She looks at you and the eyes are bigger and the her-specificness is shrinking without her having the brakes and she's shocked by this. Still the humanspirit mom that is still there hangs on to momness and she stays securely, the fragments, glued together with just a laugh or a searching look, or a grabbing my hand and thank you so much emphasized hardly the only words she can get together - with my name
this is an impossible situation for my mom, and for me. I can't imagine being completely vulnerable and needing total care and being lucky enough to be in our little farmhouse in notthecountry, with only one anchor. Me. If I was a movie studio I'd be a mogul.
If only I had infinite ME. That's where I let us all down in this whole house. I can't actually do any of this. I'm DOING IT, yes. But I can't actually Hercules it through. I'm a fucking mess. The way any studio head is if they are running the studio and ALSO down on the set when the trucks show up AND staying til the location manager leaves at the very end of the night.
For THREE YEARS. Notcounting19daysinEuropelastsummer.
I don't mind dementia I mind the days being one after the other and the deadness of that time stretch, but I don't mind the cycle of my mom. Her cycles have defined me because she was the only one up ahead to gauge by. Even when it was just her and me and my brother when she was newly divorced and we were back in Maryland, I felt like I had to know EVERYTHING because I was intensely curious to know how to be female and what was going on it looked like divorce was a disaster for the heart, just demolishing for the spirit of a whole heart. I was my mom, but I was also a 13 year old kid, with teen magazine pictures on the wall and a horse to smooth the center of me, the horse applied to the girl makes the girl a girl for longer. (The view from a horse can take you places. You can see from higher up and no one bothers you.) I guess what I'm trying to say so badly written is I'm still learning how to be a good person.
This early exposure to heart devastation viewed through a broken mom and gorgeous nature viewed from between horse ears made me exactly this:
lonely dreamy determined hesitant
All perfect qualities in any heroine written by LM Montgomery.
I LIKE the raw material I've had to slop together to make this incredibly confusing and flung full of everything life I've had the LUCK to have wrapped up and placed into my long legged body with my very romantic first and middle names. I've had some incredible dogs over the years. No dog has been a mistake except for owen but he was really no trouble. I took on my mom 3 years ago maybe because we had the room. My daughter had just rejected me, there was a nice fleshy pandemic in the works, and I didn't feel like working on my relationship.
I just didn't know that Dementia, just like pregnancy, would be killer in how LONG it takes. I could have survived it easier if it had been a few months off, a few months back on, you could even enjoy the changes.
But here we are. Mr 3 Years Later. Marriage on the rocks. We're nice people, don't get me wrong. It's a not unkind rocky shore, or maybe that's all relationships with me in them living in the house. They take tending to, and I tend to not enjoy being vulnerable where I have to actually be in the room. I'm a writer. I like to watch, feel, and then run away to figure it all out in words. And lately it always comes out in gay cowboys but that's just currently, apparently I'm the voice of the gay west but I'm not giving up. There's a reason the gay west has chosen me. Something has to be right about it because it's coming out of me. I'm all I have to go on.
Anyway, you see why I haven't written in awhile. Things aren't very neat over here. Everything's still getting graffitied in, and then dementia is spraying a big fat assed FART in bright yellow on top of all my good work.
I think I'm still in there somewhere. There's a little blossom of good. The kids are perfect. I'm reading all I can about what it was like to work on the set of Little House on the Prairie in 1976. You should borrow the books from me, I think the answer to what is life might be in there. It has something to do with pioneers. An open landscape. Very cool clothes. Some movie cameras. And no cars. Finding your way in a savage world where the savages were actually just the local people.
But the beauty of the space, I miss open space. I could fill it up with all my feelings and there'd still be room for more. And water to wash it all away, just down the creek.
