I haven't written here forever. What is there to tell you unless it's another bitchfest about how tired, sad, frustrated I am?
I'd like to tell you it's the same old same old. In some ways, that would be good. It would mean there was no change.
But here it is, 4 a.m. and the smell of poop is everywhere. I can't get it out of my nose. So of course, I have to tell you. This insane frustration I don't know what to do with... if I talk about it here, it helps a little.
We are playing russian roulette with his legs... he can barely barely stand anymore. He does to pee and to transfer him to the toilet to poop.
I finally fell asleep at 3 a.m. This is a whole 'nother story. I cannot, CANNOT sleep. If I get 2-3 hours a night, it's a good night. I'm unclear why.
There's a whole thing going on with menopause and hormones but I'm already discussing other bodily functions. I'm reluctant to regale you with that, too. Needless to say, I'm 90% sure my body being out of whack is affecting my sleep. Along with, you know... 100 million things swirling around in my head.
Back to tonight, I've been asleep for all of an hour and I hear him shouting for me. He has to pee. It doesn't even occur to me to get him in to the bathroom just in case. I can barely think. He stands to pee, I hold a urinal and then he is all freaked out, crying about having to poop. This has happened 3 times in the last 10 days. I suppose I should be happy he's going. In the support groups I'm in, I've heard a lot about manual extraction for constipation. :( :( :( I've had to do that once. I guess that's a bright side?
I pull his pants back up, which are now... gross. I'm telling him it's ok - it's just poop, we can clean it off, stop worrying about it. I'm sure he feels everything that would go along with a grown man shitting his pants. He wheels himself in to the bathroom, which to me is a feat in itself. I have to circle around the long way to get to the bathroom and meet him there. We count - 1-2-3 and lift him to the toilet. This part is easy - he's like a skinny ragdoll. I can maneuver him to the toilet AND take off his pants at the same time, only this time it's poop sliding in places it shouldn't.
The tough thing is - besides this mess this time - is how difficult it is for him to go. I totally realize this is too much information. Let's just say this whole process is one of the most difficult for me to deal with. I have to stand by, waiting... and waiting and waiting. It's like an awful metaphor for our life with ALS. I sit by and wait as I watch him suffer and there isn't much I can do about it. I just stand by and wait for him to tell me what he needs.
This whole bathroom thing takes anywhere from 30 minutes to an hour depending.
Man, I'm going to cry now thinking about the next part. Getting him off the toilet is amazingly scary. We have to start using the hoyer lift - this gigantic contraption - taller than me - that will lift him from one place to the next so he won't fall.
The thing is, it's just a huge drag. This sling will have to sit underneath him all the time. I'm trying to think of a way to describe it. Think of a six foot man sitting in a swing. All hunched over, skinny limbs hanging out of the sling as I commandeer the lift to get him to the right place.
Yet again, back to the story at hand. I have to lift him off the toilet. Both our lives flash before my eyes as I do this - I am so scared he'll fall down. He fell about 2 weeks ago when we were out and about, we were in a family bathroom. Fortunately, I was standing behind him, holding on to him and he fell back on to me.
In this scenario, I'm standing in front of him, I hook my arms under him and lift. 1-2-3 up. I can't do it anymore. We are going to have to start with the lift...
So now I have him up - he's still full of shit - he can't stand, I'm trying to wipe him off - he's hollering at me to get the shower chair and we can shower him off - I run to get the chair (about 8 feet away) and he start hollering he can't stand anymore so I run back and tell him he's just going to have to deal with it. My heart is breaking as I write this. My man, my rock my dependable husband is now sitting in his shit and he's ok with it because he's so tired, he's so worn out, he's so defeated he just wants to fall asleep.
We have more home health care now. 16 hours a week. We've had it for about a month.
It's actually averaged out to about 10 - 12 hours a week because someone doesn't show, or they pull our aid because we're not a high priority case.
I'm grateful we've started it. And yet, I'm not quite in the groove of having someone sit in our part of the house, just hanging out. Luther sleeps a lot so most of the time, they just sit there in the dark with him. There's not that much to do. They're here so I can leave. Some days, though, I don't want or need to leave. I'm sure we'll get a routine down one of these days.
Well - it's now 5 a.m. What else can I tell you? We have a clinic coming up next week so I'll give an update on Luther's status then. For now... ?? I don't know. Sleep feels elusive.