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.
I wake up Wash this morning "Outside!" "Wash, you can't go outside, it's hot and wet right now. You need to take your pills first." "No! No wanna go out! The... the... stuff, the outside stuff; our FURNITURE! Is it gone?" "What? Why would it be gone?" "It's a YES OR NO ANSWER TASHI, IS OUR BACKYARD STUFF GONE?" "I don't understand why you think it would be gone...." "THE STORM. THE STORM TAKES STUFF. DUH, TASHI." He goes and looks out the window. "SEE??? You could have just said, 'No'." [everything is EXACTLY where it should be outside]
I just... what?
Waiting for his meds to kick in and the Hospice nurse to arrive. How's everyone else's morning NOT dealing with brain cancer?
For reference, nothing has EVER gone missing during a storm for us. The umbrella gets knocked over, but nothing
goes MISSING. And I took down the umbrella earlier.
I'm wondering if he thinks it is Summer 2011 when we had our things STOLEN from the backyard?
Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.
I did warn you....
His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.
His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.
He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.
He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.
He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.
I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.
But, he kind of is.
So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.
I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.
He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.
He does not kiss me anymore.
I rarely get hugs. Maybe a couple times a week now.
We are growing more distant as his memories start to fade.
I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.
It's harder to sleep in the same bed.
We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.
I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?
I cried a lot last night, when I was alone downstairs with the kitties.
It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.
It's hard to see him in pain.
It's hard to deal with my own pain, all encompassing.
I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.
I should try to nap today while I have an aide here for a couple hours.
Lately though, my sleep is plagued by bad dreams.
I got 3 hours of sleep last night. Fucking brain cancer.
Lately he just forgets he has cancer, he is sick, he needs help.
He tries to do things, most of the time just making a bigger mess or destroying what he thinks he is "fixing".
He thinks he has a job. He can't remember what he does though.
He thinks he is starting school soon; he's not.
It takes 30-90 minutes for him to really notice and remember what is different, what is changed now.
To get him to agree to take his medications...
He feels horrible without them, but his brain doesn't always remember he is sick, or that he feels better with meds. It takes time for him to recall and that time is excruciating to wait for him to take his meds and feel better.
Short update, I'm hoping to be back to write this afternoon.
It's rained twice this week! Not enough though to save my garden; only some of my wild Basil is still alive. It's been too hot, too sunny since we lost a neighbour's shade tree, and with my broken feet I have not been able to get out to water it myself.
I'm not sure if it's relate to the weather, but Wash's pain has been increasing almost every day now. It really started to get bad about two weeks ago and now it's every hour or two that he needs meds to keep him going.
When he's not in pain, he's able to enjoy reading his LEGO building books (thank you Mark and Dayna) or to build/play with his LEGO sets.
He's been watching some older series too, things he says he can't remember anymore. His short term memory is declining as well. He needs a lot more help with the little daily things, and many many more reminders.
I have to be patient with him, and I'm not always. I could be better.
My foot is still quite sore and bruised from falling again this week. Gorram cats. I don't think I broke anything new; there's no new swelling. I'm getting another x-ray in about two weeks, so unless it gets worse I'll just wait. I'm trying to keep off it as much as I can and DAS BOOT it up if I have to stand or move about.
We had another Eval or two and Wash has gotten to the point where we will have a daily Aide coming over now to help. As of this month (or, the next 2-4 weeks unless it needs to change) we'll have an aide here now daily for 3-4 hours. That will help with some of the daily house needs, at least one meal that someone else can prep for him, and give me some time every single day to rest myself, a novel concept.
Wash also gave the "It's not you, it's me" speech to the (awful) Medical Social Worker. Hopefully we can get a new one (been trying for months) but at the very very least the MSW is aware now that we need someone who can take or return our calls, doesn't take vacation days in the middle of the week or take holidays without telling the clients (us), listens to Wash etc. Tried to be clear that it was not a "you are at fault" situation, but more that the MSW is not meeting Wash's NEEDS, and we need someone who can.
I am hopeful at this point.
The MSW is also working on a grief counselor for Wash too. He really needs to talk to someone, he's so scared of the next phase to come.
Let's see. Our main school in the big tank of danios is down to 2 males. We had 6 one day and one died. I took the dead one out and the next day instead of 4 fish, there were only 2. I never recovered the other bodies. Cannibal fish or a smart wet-pawed Leto, methinks.
However, before the massive die off, I did recover some fry. We have 3 fry in the baby tank now slowly growing into big fish! Can't tell their colours yet, but they will develop as they grow.
My mum helped out a bunch this week and did errands for me, so we have groceries and mail and bills paid. Hurrah! (Step) Dad made Shepherd's pie for Tuesday Dinner night this week; the leftovers might make it to tomorrow even! It's so good it rarely makes it more than a few days before someone in this house eats the leftovers.
Wash and I continue to thank everyone who keeps sending in Lego sets. He plays and builds them. Speaking of thanks, I need to get to work on his birthday thank you notes. Obviously he cannot do them anymore, so it's just another task that falls to me.
I can't even recall what else I wanted to write about. I've been trying to get some of my own rest and recovery in, and doing a lot of watching him and trying to treat his pain. Some days/nights he refuses his medication; sometimes just a couple hours, sometimes longer. He just gets so agitated and then confused and his confusion blocks him from being able to take meds, or calm down.
Brain cancer is pretty fucking awful.
I'll have more later. We're both still here, still alive.
I can think of over 2,000,000 reasons why I dislike/hate (policies) our Insurance Company. The State run, "for the poor people" company.
Cause in our state, even the companies run by the Government are "profit" centered, not focused on giving the BEST healthcare to the Citizens of this state. It has focus on the CHEAPEST care.
AHCCCS does not cover my CAM Boot/cast [DAS BOOT!]. Apparently they only cover casts or walking devices like that if the patient is under 21, or a diabetic. I am neither.
I also now need $209.86 for said Boot. [I spoke with the guy who owns the medical supply place, he's willing to deliver and fit it for free on me in home because of the situation with Wash, but I still have to pay for the boot the insurance won't cover.]
So, I either go without and let my bones get worse and need surgery, or I need an additional $200 from a non-existent income.
THIS IS EVERYTHING THAT IS WRONG WITH PROFIT BASED HEALTHCARE.
So, some good news from all of this is that we do have extra help, ALTCS [part of Wash's AHCCCS insurance] is covering 8 hours per day for at least a full week, and depending on how I'm doing and what my doc says by the end of the week it could go on, he has the option then for Respite care outside our home, or I might be able to go back to doing most things by myself. Not really sure at this moment, but I made myself and Wash promise not to talk about that until after his birthday, just so I can get through the next few days with less distractions.
I did hear back from my doctor yesterday. She sent my x-rays off to a separate radiologist to check it out. My break is an abnormal one, an incomplete fracture of my 5th metatarsal on the right foot. The swelling continues each day even though I have a "soft cast" wrapping on it for the weekend. My ankle is also turning purple/black. My lovely blue iris foot tattoo is all misshapen from the swelling and miscoloured from the bruising.
It hurts, but the doctors are right and it won't heal if I don't keep to my bedrest and stay off it.
My left foot is still technically "broken". I broke it 3 weeks ago, and tried to push it this week, like I was back to normal. I tried to do too much, carry too much weight, make too many trips in one. So, I guess I should not be that surprised that my left foot gave way under all that stress; my foot gave out and I fell with all my weight and the trash on top of my right onto my right side foot hitting the concrete sidewalk.
I'm quite happy that I had a follow up already scheduled this week, so I got to go right in and have my doc give me x-rays instead of a more expensive and long ER trip. Wash was worried and did want me to go to the ER, but it was about 6pm and there was no one to look after him. My doc says seeing me before 24 hours was up was just fine, and as it was not a compound fracture I did not do any additional damage by waiting a few more hours to see my own doc to check my foot.
So, since it is broken, I will have a harder "cast" type of thing put on my foot and I'll have a 'walking cast' type boot [DAS BOOT] to use with my crutches for at least 4 weeks. Knowing my history and my doctors, they might tell me 6 weeks to make sure I don't break anything else/re-break it.
I have a follow up x-ray at 3 weeks to check the healing and make sure it's correcting on it's own/ that I won't need surgery. At this point, it does not look like I will need any surgery, but the doctor can't guarantee it, and a part is on me to make sure I am being medically compliant.
Wash did most of Helm's Deep LEGO set this week, and I did an Orc/ Uruk-Hai kit last night to complete it. He's out of "new"/un-built sets right now, so I'm not sure if he will be playing with them, mixing the LEGO sets with his Warhammer 40K stuff, or if he'll disassemble it to rebuild.
I had my mum get him the 6th Ed Rulebook for Warhammer that came out this summer for his birthday.
There is something I want to get him, but it's going to be complicated to do without getting out of the house. Maybe I'll have a chance Sunday before his birthday. I am not certain yet if we're having some friends over tomorrow. We're doing Tacos on Monday though for his birthday. It will be a nice low-key thing with my family.
I'm including pics of my feet because I'm weird like that and I like to share my pain.
That's about all I can remember for now. Thank you all Dear Readers, for being so kind and supportive during this. My own brain is guilting me up bad, but my brain can suck it sometimes. I'm doing my best giving him care 7 days a week (outside of my 9 hours per week as "break") and I my body can only give so much for so long before it tells me to slow down.
Please no "I informed you thusly"; I feel bad enough mentally and physically. Rewind approx 3 weeks; Doctor, "Now, Tashi, stay off your foot as much as possible, don't do extra things, don't carry extra weight, wear the right shoes...."
Decided to try to take out the trash and recycle garbage last night. My broken (left) side would not hold me up and the bags of trash and I fell with my right foot onto concrete. It's swollen beyond belief and I can barely limp now. I'm seeing my doctor this afternoon. It might NOT be broken, but it very very well could be. I might end up with a walking cast of some kind just so I don't re-break or break anything new. I feel awful; mentally. My foot hurts, but my brain is telling me I'm awful for not listening to my doctor and still trying to do everything. If I don't, who will? Right now, it's me or no one.
I'm a 26 year old former Caregiver. This is my voice to talk about my life- mostly about learning to live now. My husband was diagnosed in November 2009 with Glioblastoma Multiforme- terminal brain cancer. He was only 25 and I had literally just turned 23. He fought hard for almost 3 years before he passed away September 2012, just a month after turning 28.
This was my blog about our life.
This is still my space to find Hope.
This is now my public battle to show what life is like as a 25 year old Widow.