It's 6 a.m.
I wish I could take a picture of the room. By the door is the pajama bottoms and full diaper. On the way through the kitchen are a walker, some sleigh bells thrown down that had been on my mom's bed and didn't warn me of anything, and a little white dog named Steve hanging by the front door, the only witness to last night's Tennessee Williams play that I'm playing out in here. Unless you count Barry who hears it all on the baby monitor from the oasis of the safe warm house where everything is normal.
I guess I (as well as my mom) are continually shocked, every night and day, with this Dementia Plan that we got assigned, that it is happening to us. We are reasonable people. We paid our taxes. We ate pretty well. We exercise. We appreciated small children and gentle animals. We like colors.
Dementia happens to normal people. And then you're on James Cameron's Titanic, where the shooting days are running into 18 hours, the budget's out of control and everyone thinks you're an asshole.
The problem with the getting up all night with mom now is that she's weak, and needs help not falling her way to the bathroom. She fell in the closet twice, and has a body that looks like she just finished some fierce roller derby. Now it's like following a toddler when you're on suicide watch, where everything and every surface they cross is frozen ice or poison lake. It's not like I miss my old life, there on the distant shore. My family waving to me or looking at me concerned. This is the time I have left with my mother. It's not the way I had planned, in a cheery kitchen with steam on the windows, making Christmas cookies and then she gently slides into the dough leaving a smile impression that we bake later.
Somehow we signed up for the more wrestly version, in the darker hours of early morning, where I block her bed with old crib rails so she can't climb out, decorated with sleigh bells so I can hear her even though I'm in the next bed over. I haven't slept in so long that any two hour stretch she is asleep I'm afraid I'll pass out so hard I won't hear her unless there are bells on.
The crib rails (this was the first night I tried this, working on two nights of no sleep and one day away from calling hospice - just get me through this ONE NIGHT) - anyway I didn't have a crib rail for the bottom of the bed so I blocked it with the walker and some bells. Then she wasn't going to sleep and I was desperate so I gave her the anti psychotic that is supposed to help her sleep but I think it gives her seizures so I hadn't used it but tonight I needed so sleep. So she sleeps like a rock for three hours and so do I and then she is restless.
At first I get up and try to reason with her to get her to sleep. Then I walk her to the bathroom even tho she barely has anything in there. Then back in bed. Then I can't sleep listening to her, even though she sleeps. Then an hour later when I'm starting to fall asleep she is moving again. This time I decide to let her try and get out of bed, she's blocked in, and maybe it'll make her tired. An hour later she is still trying and I've gotten up three times to pull her back up to the top by her pajama pants so she can start trying again to get to the bottom of the bed. I feel pretty confident she can't get out. I start getting tired.
I fall asleep and I wake up and she is standing at the foot of her bed, how the EFF did she get out of that, and she's freezing, her pants are half off, her diaper is full of human water, how long was she standing there? I do not get her in the bathroom. I am so mad that I argue with her, tear off her pants, her diaper, wipe her, put on a fresh one, and wrestle her like I am King Kong back toward the bed and then heft her in the bed, without touching any of her sore legs parts, sore ribs, it's like a landscape I know where all the mines are. She is floppy and sweaty and upset and as I'm manhandling her, I'm mad at myself, and finally back on the bed she looks glassy weird like she's having that weird seizure or maybe she's dying, I'm always expecting that, so I gather her up in my arms like my giant baby, sitting on the side of her bed holding her like a sweaty bag of rotting sweet potatoes and I'm rubbing her back and saying sorry mom. Sorry mom. I'm not a nurse, I'm a daughter. I'm sorry too she says. I'm trying to return us to some sort of dignity after the wet and the wrestling and the confusion and the nighttime.
As I get her back to bed she's back to insane and still restless and I'm pulling her covers up and she's pulling them back down and I'm afraid to medicate her again because I'm not supposed to mix medicines, we've been trying to find one that works and none work. She's flailing around trying not to poop in her diaper which I understand and appreciate but I tell her just DO IT MAN. YOU'VE HARDLY HAD ANY WATER, it'll be like charcoal. No problem to clean up. I can't lift you to the bathroom any more tonight. This is the night we aren't doing that anymore, we're doing this now.
I'm sorry God she is saying as I put her crib rail back up and I say You're sorry JULIE, God is getting a good night's sleep.
I get back in bed and she is still impossibly active, making Moose stew over there of her sheets, trying to get up, trying to poop, trying not to poop, not having any luck with anything she's doing, I alternately get up and rearrange her and comfort and lay in bed trying not to do anything and wait for sleep for us both. I finally give her a small dose of her anti anxiety med because she is in terrible distress. It's been a lot of hours since the anti psychotic so I figure the doctor would give me a thoughtful armenian (that's him) thumbs up.
She is asleep. During the last part of the restless ocean of tumult in her bed it was just getting to be dawn, the dark part of it, and I heard the horse gate open in the dark and it is part of my family, the Kurt part, showing up to clean up horse poop and feed them before I'm even up. I was just thinking shit, I have so much to do before school starts and here he is. Helping me.
In the dark, there's a scratch at the door and there's Huck the yellow lab, coming to start his service dog feature of coming to me in the dark from the big house and laying on the bed. Then a few minutes later Becky, the black lab comes and joins us.
Barry texts because he's listening to the whole performance from the house. I am not alone.
My mom is not alone. She is just struggling with this ocean of pain and confusion. I do miss the nights when they brought solace. The blanket of sleep after a long day. I am searching til I find that solid peace again.
I do not take for granted, the support I have, four legged, two legged, leafy and pharmaceutical.
