Mom is starting completely over. Well, not completely. She can think, and use her words. And she can smell. But thats about all that is intact. The rest is starting over. Sight, sound, touch and even taste... all need rehab.
This week mom is learning how to walk, talk, feed herself, groom herself, take herself to the bathroom, shower.... It is, overwhelming to say the least. Especially when all of us were in a place where we thought we were seeing a light at the end of the tunnel. And now it feels like the tunnel has collapsed, and we are picking pieces of dirt, one at a time....
But there is progress. When we got here last week she couldn't stand on her own, or use a walker, or find her mouth with a raspberry. Now she is feeding herself with a spoon (last night we had the fork AND knife in action). She walks down the hall with a walker and a physical therapist... she sits and washes herself off in the seated shower. She brushes her hair and her teeth and washed her face and her hands at the sink.
It's just fucking slow. It's pull your hair out slow. They gave us a going home date- The 18th of August. That is one week from today. And while I've seen how much they have helped her this week, and am so looking forward to seeing all she can conquer next week, the fact remains that she has A LONG WAY TO GO. A long way to go just to get to where we were. That frail exhausted weak cancer patient. Hard to believe- but right now- even that seems good. At least then she could walk. SO in some ways next saturday seems too soon, on the other hand another week in the hospital feels like an eternity.
Her speech and her eyes have probably improved the most- when she looks at you her eyes stay mostly strait, and her speech is not nearly as slurred or high pitched... at times she sounds downright normal.
Dad and I thought that the hospital would be easier. That here she would have 24 hour care and we could get a break. But in fact it is much much harder here. One, because one of us is here all the time. She is just too frail to be left alone- and two, the hospital is a scary place, especially at night. So dad and I switch off, he takes two nights I take one... and that way she is never alone. So that is extra exhausting on us too. At a time when we were so desperate for a break, everything just got so. much. harder.
But the therapy is great- and we look forward to it everyday- we have an hour (or 2- depending on the day) of physical therapy- which is walking with a walker mostly, some basic exercise and they usually end with a neck rub. Then we have Occupational therapy for an hour or two. We had the BEST therapist Erin (hi Erin, she joined the mailing list). But she left last Thursday to go back to school, and it's not the same without her. She was super fun, and very good at her job, and made therapy fun. The new girl is ok, not nearly as fun. Erin played yatzee with us (and mom beat both of by the way... asshole). Then we have speech therapy- we practice talking, breathing, swallowing. Next week we will start some group stuff, a stoke class, and a community class (whatever that means).
Also next week she is going to get a botox injection in her neck. They say it will take a few weeks to really take effect- but it should, hopefully give her neck some much needed relief. And what a bitch that is- in the middle of having to learn how to walk and sit up and lay down and all that shit- her fucking neck still hurts.... what a mother fucker.
Oh man, poor mom. When it rains it pours.... the thing is- because her mind and memory is all there- she totally realizes how much this sucks. She says things like, I just want to be normal again. I just want to go back to being a normal cancer patient.... jesus.
But she is a trooper, and I KNOW way down deep where it counts, that this story has a happy ending, that one day she will be hiking up Grizzly Creek, and thinking- man- that was a weird fucking year. And she will be healthy and happy and retired and Dick will be driving her crazy and joey will be by her side.
Cuz that is how this story is SUPPOSED to go. And if we all WILL it that way- that's how it WILL be. But jesus man is there a lot of work to be done.
so wear your bracelets, and keep in touch. She loves to hear from you all.
thank you endlessly for your ongoing support.
Until Next time,
as always
we remain,
Team Carter
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