Freckles

Wash is tucked away, with his blankets and little stuffed dog and Hoban the Bear. His pain spiked up very suddenly this evening but we managed to get it back under control and down to where he can relax, not spasm and sleep.

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.

Faster than any known substance

Managed to get out for a walk last night, yay!

I don't have time yet, haven't had time to write about what is really bothering me lately, the newest drama to go on.

When someone's dying, I've found there will always be drama to be created; for some reason even the most sensible people don't want to TALK about issues, address things like adults- even when some members of the discussion have 40 years on the next person. Maturity I have found has no real relation at all to actual age.

My asthma has been bothering me again- could be the air, or the outside daily garden work I'm doing, could be just stress... usually the summer is the best season for my asthma, it responds quite well most years to the dry heat. I've been having to nebulize daily lately, I can see my ankles getting more swollen too.

Wash is also getting quite steroid bloated. He looks like he's gaining weight, but it's so weird, because he's not- it's just fluid!

We've been having a lot of Hospice and ALTCS meetings this week. More evaluations. Trying to figure out where Wash is at, how much more help he needs, how much more help *I* need etc.

It's about Wash, which is how it SHOULD be.

Physically he's feeling better than last week, he's been home three nights now and we've even gone on one night-walk around the block. This is pretty good for him. I try to get him moving every other day- once he loses his muscle he is past the point of being able to re-grow it. He's just too weak now.

We do have a bit of joy coming though, a good friend and Shitass S. is coming to SunValley here with some friends on a road trip and will visit with us some! Wash and I are both quite excited.

I have an appointment next week to get my eyes properly checked; hurrah! I miss being able to see.

I will dwell on emotions and drama later. For now, coffee calls.

New Shot

So, after last Saturday and my much needed escape, I'm pretty sure that's when I became sick. By Monday I was feeling something off in my throat and Tuesday I was full on plaguesick.

This week kinda went by in a drug-haze. I think I slept most of Wed and Thursday.

Something nice to come of this though, is the help and services offered by ALTCS. Since Wash was finally put on it in April, and had a case manager and home-health services provider assigned things have been a bit nicer. I spoke to the Hospice SW on Tues and said I was not that well and he suggested getting some help in for the week. I agreed. Wed I spoke to the ALTCS manager who within hours had someone there for Wed evening and a full 6 hour shift set up for this past Thurs and Friday.

It was a gods-send. We had the same lady on Thur and Fri and she played with Wash, helped him with his stuff, made lunch and cleaned up too! Basically all the things I do, while watching him and helping with pills too. I slept quite soundly knowing someone else was able to watch him.

I still am clearing out the last of my illness; I'm hoping I do not have an ear infection now from this cold. But, I can breathe for the most part, I'm no longer going through a box of tissues per day, and I'm able to get some of this crap out of my head. So, better.

I'm thinking though, very seriously about calling up the case manager tomorrow though and asking for some part-time help; twice a week for a few hours is still more respite time than I'm currently getting and I'm finding that having a little "alone" time is very good not just physically, but mentally for me too. I'm reading a little more, I can find a little more enjoyment in things.

I'll have some good things to post tomorrow, but just for a day Wash wants to enjoy something quite wonderful that was done on his behalf.

I am thankful for the friends and support we have.

Fluffy Days

So much to do today, I don't have much time for an update.

Someone from the long-term care side of Wash's main insurance; AHCCCS is coming over today for another medical evaluation. Sadly our social worker can't come til tomorrow to explain things, but I am just going to write down every question that I have today with the new 'case manager'. I got some paperwork from ALTCS a day ago (finally!) but it is 9 pages of financial reports that I just do not comprehend. I cannot tell if we were approved or denied again! At least they were correct with our reported income; $26.00 in the bank. Hopefully the Social Worker will shed some light on the papers tomorrow.

Wash had an interesting day yesterday; He woke up very confused, was not certain really what day it was or the things he needed to do, even after looking at the schedule on the board I put up for him. He was just getting so mixed up and a little scared. I called our Hospice nurse, who spoke to him for a few minutes. Since he was not aggravated with his confusion this time, she asked us to check in again in a few hours, see how he was then. He was not angry at all, just a sad and confused.

My mum came over in the afternoon to help us on a couple errands, and Wash was feeling a bit better when we went out at first, but he was tired and dropping by the time we were done with the first thing. Poor guy. I had him sit down in a chair but he was still just so tired. I think I should have just put him in his wheelchair yesterday for going out.

We took him home and put him to bed while I went out to finish my errands as he slept.

He had a 2 hour plus nap and was a bit more lively when he woke, and a lot less confused at that point. I called the Hospice Nurse back, she spoke to Wash again and seemed to agree that resting did a good job of helping to "clear" his brain.

It was a busy day on top of taking care of him.

I'm doing my best to catch up on emails and such, I ask a little patience.

So, we have the entire afternoon blocked off for Wash's medical stuff and then recovery time for him, and then it's the last Shepard's Pie Tuesday for the "winter" so I am looking personally to my [step]dad's cooking tonight. He makes some wonderful vegetarian meals for me, and I love so much that he does it with love for me.

AND THEN comes Wednesday and my happiest hopeful moment of the week; my older brother is coming in from Japan! He's only in town for one night, as he was hired to fly some folks in for a Spring Training game and fly out tomorrow, but I am so excited to see my brother! He's about 12 years older than me, so we are not *super* close, but he is my older brother, and I love him like I love every one of my siblings. {Step or bio}

I want to also take even a minute and just write out a thank you to every single one of you. Everyone that has stopped by and read my words, or heard Wash's wish, or spread our story, or felt moved to help in some way, thank you. It is every single one of you who gives me Hope for us as humans, who give me Hope that we as humans can in fact come together.

I will be hoping for a good day for us, a good day for Wash, and I honestly hope that every one of you, Dear Readers has something good in your day too.

I hope you know that you are loved, and thanked, and appreciated just as much as Wash and I feel today from all of you.

Radius

So far it does seem Wash's med change has helped him with his afternoon energy and his appetite. Sadly, it also seems that anything I say or that happens in the morning is taken as me "attacking" him and he's very rage filled and has very little emotional control.

Seems if he is left alone for a while though, he can mostly calm down, and the rage goes away by afternoon.

Still. We'll talk to his nurse Monday.

In good news after I gathered more than 30 pages of requested documents (at my time and expense of printer ink) to give to the Social Worker (SW) he battled against DES for us for a few more hours on Thursday.

DES-"So, our problem is that based on numbers their medical costs far exceed their reported income."

SW-"Yes, that IS the problem. That is why the need to continue with insurance coverage and the SNAP benefits."

DES-"But HOW are they paying their costs?"

SW-"They're NOT. That's the point! With coverage they can sometimes pay bills with donations and community support. If the coverage stays cancelled, they will be homeless to afford to pay for food and medication."

DES-"Ok, we understand that. But we'll need to do a financial check again in 6 months. Because we don't understand how they are paying bills. The income doesn't exceed expenses."

So, that for basically a few hours. The upside is that our SNAP benefits were back today, but I don't know if they are back-paying our funds or not.

The downside is that outside of getting assigned a name; "Dave"* , we have not moved forward with the ALTECS portion of insurance coverage yet. My paperwork shows that Wash has been enrolled in it since Dec 2011. They are trying to convince the SW that Wash is just now being enrolled and it "takes time". (Hospice Social Worker. Wash doesn't have that kind of "time".) The awesome SW will do battle again with them Monday. See, until he gets ALTECs we can't have insurance pay for Respite Care for Wash and me.

I'm still really keen on the idea of a suit against Arizona et all. I am thinking of trying to bill AHCCCS directly for the costs we've incurred since they fucked up our case. I truly think that is only fair.

At least the kitties have been cuddly and friendly this week.

And my garden continues to grow; tomatoes, peas, beans, strawberries. The garlic is coming up too. Half of the paper whites (flowers) have bloomed and the alyssum has taken over so the smell outside is so fragrant and calming. I try to spend 30-60 minutes out there every day.

Small things, but they make the difference when it's all you have.

*Not his real name