Lately he's been sleeping nights anywhere from 13-16 hours. The good news is the pain medications seem to be working, as for the first time in three years, he says his active neuropathy pain is going down. He's overall happier when he is in less pain. Though at this point, that is mostly the physical pain that is being addressed. The emotional pain from facing mortality at his young age with his already traumatized brain ... it can certainly make things harder some days.
I have been trying very hard in the last few days to really be calmer around him and just agree, even if he is making no real sense. My Wash would have wanted me to have passion still, to disagree and debate. But, right now, living it, I'm told left and right "Don't argue. Don't fight him anymore." Wash would not have wanted that. I'm not really certain what I want, and what is easier; or if they are now the same thing.
We have a good friend and his mum coming in this week from SoCal to help take care of things around here for a few days; to help watch Wash, give me some rest. To help me clean the house, take care of things I cannot with a broken foot. To let me get off my foot. To give us support; since Wash knows and really likes this friend too.
I want to be clear that it is not a case of our local support system being a "total failure". That is not true at all.
The issues are that our local support is 99% people in their 20s. Who are all just starting their own careers. We had 4/5 of our local support who lives in the same city as us move in a 5 week period. This also happened to be around the start of my foot issues. A correlation of unfortunate timing.
Our local support works, they have to, and are lucky enough to have jobs. I also really want to emphasize that they are our age; dealing with serious issues this young is a challenge in general, to have handled everything that has happened to their friends (us) over the last few years must be terribly trying for them as well; I'm honestly surprised we have not lost even more friends; like the couple I knew for more than a decade, helped keep together during times of relationship crisis, and then when Wash was ill and they were getting married... both of us fell off the map. It ended so badly. I'm still hurt two years on.
So, I am thankful for those who have stuck around and been there, steadfast. I'm thankful for our friends who show up weekly and give Wash a sense of stability and love. I am.
At the same time I recognize that our local group is quite small, and quite limited by age and work. This has caused issues. The conflagration continued with the saga of the Awful Social Worker (ASW) who we have not spoken to or heard from in two weeks, since he stopped by and Wash had to give him the "It's not you, it's me" speech to get him to leave. This has effectively left us without a Social Worker.
Wash's insurance covers 22 hours per week of caregiving (that is not me). That works out to 3 hours 6 days, 4 hours 1 day of the 7 day week. That also leaves 20-21 hours out of every day I am alone here as the sole caregiver for Wash, who needs EVER so much more help these days with everything. This means that for the last three weeks, though I have been wearing Das Boot I have not been able to keep off my feet as completely as my doctor requested of me when the break first happened.
Which leads up to this week, when help arrives, and today, when I had my first set of follow up X-Rays.
There was some expected news and some good news, tempered with some mild hope.
My foot has not healed. In fact, it is still quite weak and broken.
However, my doctor also knows me, and he knows Wash (the office took care of Wash as his Internal Primary Physician) and he knows our situation. After I explained that I was being as medically compliant as I could, without putting my husband in danger, he decided that giving me 3 more weeks in the Boot to try to heal more would be ok. He also gave me a note to pass along to Wash's insurance in the hopes that with some medical backing and paperwork the insurance company will allow for more Aide hours to caregive for Wash while I stay off my foot and let it heal naturally. Or else my insurance (which is the same as Wash's; AHCCCS, the State Run Group) will eventually pay thousands for my orthopaedic consult, hospital stay, surgery, casts, and physical re-hab. Giving me a full day caregiver for 3-4 weeks seems ever so much more fiscally practical, let alone humane.
I don't trust at all my Insurance to make a humane decision though.
Ah, I'm tired.
So many of my close friends are going through some losses of their own right now. I ache that I cannot be there more for them.
I'm also so thankful for my extended friend family, and the Geek/Browncoat Army which has rallied to help raise funds for my friend to come help us and take care of me and Wash, and help me take care of Wash as we move towards what I think is the end.
He is in more pain each day, but so far thankfully each day we have been able to keep it under control and not to an unbearable point. He also has some new worrying swelling in his face/head and some specific pains that make me wonder if he has another brain tumor and perhaps where it is working it's way around in his brain.
He's not playing with LEGO sets too much right now. He got a couple LEGO books and I think is reading them and trying to get an idea to do a project with a mix from his sets. I hope. I hope he is still enjoying them, even on some level. He enjoys less things over time too.
Burgers he still loves, though, and watching Dr Who with our friends. Warehouse 13 on Monday nights, where he still claps at Jane Espenson's name on the credits. Every.Time. Every. Week.
He plays games, like "walk the plank" and some other Pirate themed stuff. His Aides are wonderful and take care of him, clean after him, and play with him when he is awake and has energy for it.
There's a few other things, but I'm quite tired and past the point I might have been trying to make with this post.
Cheers for people who love and support others, be it by phone call from across the country, or bringing over a set of burritos for a terminal guy to eat, or friends buying groceries to be delivered since my broken foot in Boot makes driving impossible. Postcards. Texts saying "I'm thinking of you." So many ways to show how much care, compassion, and friendship exists.
We are rich in friends all over the world, even if our local group is numerically small.