Short Commentary

I took 15 mins out of the start of my day to read the news and celebrate the Supreme Court upholding the Affordable Care Act.

Reasons why I personally love the affirmation on the ACA;
1) Because if Kevin "Wash" Pratt-King had been able to get insurance through the State OR an affordable private source when he was unemployed due to his tumor in 2009, his brain cancer might have been caught before it was "terminal" staged.
2) Because Kevin "Wash" was only 25 when this happened, I was 23 and neither of us were able to be covered for insurance under our parents (which again, could have caught the tumor early)
3) Because (hopefully) after 2014 no one will have to have an Insurance Appeals Judge tell them to "move to Canada, we can't pay for your medical needs in this State."
4) Because (hopefully) after 2014 individuals and humans won't have to beg strangers for money to afford medication to live; which caused The Fundly website (for us)to even need to exist; http://fundly.com/thecommunecares

Want to argue with me AGAINST the ACA? Please donate to help our medical bills first; because without the ACA my life and my husband's are literally held by stranger's kindness.

EDIT;

Reasons that Wash and Tashi think The Doctor would also be excited about the ruling today;

1) He's a DOCTOR (of everything!) of course he supports greater access to preventable care

2) Greater chances for medical advancement with more access to patients to study (with informed consent)

3) More preventative care now means less chronic illnesses and death later- MORE COMPANIONS!

4) The Doctor was born with two hearts; he'd be pretty keen on getting rid of "pre-existing conditions" clauses.

5) It saves lives. The Doctor can get behind that.

Loops

Wash had a bad night on Mon.

He almost fell in the kitchen. He said his legs were weak and numb.

Almost 2 hour after that he had odd sensations and pain in his neck.

Hospice sent a nurse over at midnight for him. Very nice guy, B. who checked Wash out.

He gave him some liquid meds and about 30 mins later Wash was moving his legs comfortably.

He is increasing his Ativan and steroids- in case this is from brain pressure from a tumor(s).

Outside that, Wash will have a walker delivered tomorrow for use around home/walking. His balance is just not as safe as he used to be.

If I have the time or energy, I want to mod it like an Imperial Walker for him. A small geek token to the nerd I love.

It could also just be stress; Wash thinks it is. There is a lot of tension and drama going on right now- I won't go into detail at this specific time because Wash has asked it of me, so I will respect his wish as long as he wants or is alive.

Suffice it to say, there are some external stress factors not directly related to his cancer which *I* cannot really remove /make easier for him. I do my best to distract him, but he has to face this part alone.

He slept in until around 11am after finally going to sleep around 2-3am. Thankfully, I managed to fall asleep shortly after him.

He also napped from 3-nearly7pm today. His body has had a lot of strength taken away, and even emotionally draining issues have physical side effects for him.

My mother was kind enough to bring over taco mixings for us tonight, so we could still have Taco Tuesday, even though Wash is not up for leaving the house.

I appreciate every bit of support from my friends and family right now.

Every day is hard.

I feel like this is the start of the last tunnel, the last long stretch.

My job now is just to give him something to smile and live for each day.

Make your own Fate

BRAVE- EHRMEGAWD.

Holy crap, my eyes, my brain, my memories of my relatives singing Scots Gallic to me...!
It.Was.Awesome.

Now, in the theatre, we bought tickets to a show so we could get there early, and I was even the first in line to go into the theatre. We get the BEST seats (very back row, directly under the projector) and the kiddos and parents start coming in. No problem at ALL, until the previews start and a couple who came in 10 mins after the showtime decided to sit RIGHTNEXTTOME.
Nope.
"Are these seats saved?"
"Yes, for the people who came on time." Says I.
"No, really, are you saving these seats?"
"That one at the far end of the row is free."
"But, we want to sit here, and there's two seats."
Tashi says LOUDLY [during the previews!] "Fine, you two late comers who disturbed this whole row of people instead of sitting in the empty seats at the bottom of the theatre can sit here. Maybe next time if you arrive ON TIME you won't have a seating issue."

Yes, I told them off. No one in the theatre came to their aid.
Also, out of 3-400 seats, at least half filled with children, there was ONE, one kid- a little girl maybe 4-5 who was chatting at the movie the entire time. Every thing- "Oh mommy, look, treats! Mommy, the Queen! Mommy, she forgot!" etc. The WHOLE movie. Several other parents asked them to quiet, they did not. In fact, the mother was ENGAGING her child, "She did forget, good job!". 300 kids all behaving, but that ONE.

So, I remember why I hate seeing movies, but I also finally saw "The Hobbit" preview, so I know I'll be going to the midnight premiere of that.
[I got two free passes, but they won't work for "Brave"- no new releases.]

Also, I'm pretty sure I was the only person in that audience who could understand Gallic and the brogue one of the Clansmen had.

Wash did not attend the movie- he could not be mature enough today to handle it. I'll try to take him on a weekday, hopefully when there are less kids and other audience/distractions around. He ended up playing with P. the Hospice volunteer, and they played with Wash's LEGOS and KREOS and apparently built Starscream this afternoon. So, he'll see it soon, but I was glad for the chance to watch and really enjoy the movie myself, without having to watch Wash watch the movie and deal with him on top.

He's a lot calmer after getting some time away from me as well; this morning he was really angry with himself, which he took out on me. It was needed for both of us to get that break.

A long day, but a good one. I even ran into some old friends who've moved away, but are back visiting. Hopefully we'll have a chance to have them meet up with Wash again before they leave.

-I plan on playing with my Merida doll tonight.

Hastily Fortified

Wash had a REAL bad day yesterday and memory wise a shit week. He has moments where he knows who he is/the cancer et all, but most of it seems to be a 27 year old turning about 6.

He doesn't remember Sept 11th. He remembers something happened in NY/the towers are gone, but the event itself he cannot recall. [We're watching a mix of OLD Simpsons lately and some shows from the late 2000s [2006+]] He forgets names every day, even the Hospice folks he sees weekly now. He's not even writing anymore, he'll read a little, play with LEGOS and toys and rest/sleep. This, on top of his confusing Aelphie this week for his old (dead) cat, Max.

A lot of the time, it's hard for him to speak clearly, especially when he gets more excited.

I don't bring things up with him anymore when I notice this, just file it away. I think he doesn't notice, I have to hope he doesn't notice losing himself every single day.

I'm still hoping he'll be feeling well enough to see Brave this weekend. Maybe.

Watching him die hurts. I'm thankful he's mentally mostly gone though.

So, that's where I'm at.

I wake up every few hours to see if he's breathing. I don't aim to do it, but I'll just WAKE and have to check.

Security

Some good news;

AHCCCS and SNAP benefits will continue! Apparently we ARE still broke, sick, and dying! It feels so odd to celebrate retaining our health insurance.

I also got my new glasses today. They are my first proper prescription in about 4 years (Thank you for the donations to help me SEE) and fitted for me and my eyes.

I can bloody well see. I can see details, I can see things without glare, without light halos.

Also, my house has SO MUCH DIRT and clutter. Before, it was all just kind of a group of gray lumps.... ugh. It's going to be hard not to clean too much and confuse Wash.

He's having a better day. Still a lot of memory loss, but it seems to me like he's forgotten his bad days from earlier this week and his severe depression seems to have eased. Though, it is still daytime and some days he is fine until sundown/sunset. At least in summer now he will get a little more light/sun. I managed to get him out for a walk at night when it was cooler a few days ago- he's gone from a walk every other day or so to around once a week now.

His muscles are going to atrophy soon. I try to convince him to move, but some days he doesn't have it in him.

If he doesn't remember I am not going to bring up his bad days from this week. Better he doesn't remember the pain or sadness. I can hope he can just move on past it.

I have had a nice few moments with my husband, a few chances for some (perhaps, last) memories. Emotionally, it's like taking a bowling ball to the stomach, but I have to focus on the good few minutes that happen, those quiet times where I can remember the man I fell in love with, or even remember more about myself, who I was.

I have to try every day to make it all count.

Starting off my morning w some good news: AHCCCS Insurance and SNAP benefits continue! We are still poor and dying! I should celebrate.

DAWN works

Yesterday Aelphie got into something NASTY- and had this mixture of sticky tar/gummy stuff on her back paw. I tried to clean it last night, was unable and had to leave her in solitary confinement until this morning.

She got a bath with DAWN soap at the advice of my friends and fellow pet owners, and wonders, it worked to get that gunk right out!

Though, it left a very very very angry and apple-smelling kitty for me.

I'm wondering where and when she will RagePoop.

Wash is talking this morning with the Hospice Chaplain, this time his "regular" one he's had since Jan. He likes her. I do too.

I'm not ready for him to die, for him to kill himself. I'm really not sure if he is, if he understands fully what he asks. Maybe, though, he does.

He doesn't want to exist in a world where he cannot communicate or create. He NEEDS to create to want to live. I think that part is fading, but not all gone. I think he wouldn't panic so much if it was already gone, I think though he's lost enough that even he now cannot hide from the facts around him.

His memory. That is the hardest for me. I truly dread the day when he doesn't recognize me at all- so far the very bad days he is just confused because the Tashi he expects to see is the one from 2009 and I'm very much not her anymore, physically or emotionally.

He comes and goes. He can have a few good hours, where he knows who he is, he remembers things, even tries to recite Shakespeare.

The rest of the time though, I'm asking him to repeat himself, because his language is slipping. He slurs a lot of words, mixes them up, or skips over half the conversation out loud. He's talking to me (in his head) but nothing is coming out. This often happens if he's trying to share something he read or saw on TV.

When he wants to, he can "put on his show" for 30 mins or so and seem fairly normal. Sometimes his voice is too loud and he's unaware, or he has a lot of random points to make, but he can pull off "his" normal; sort of.

He did speak to his father this past Sunday, which I'm happy for. However, he wants to avoid completely the issues with his parents and family, he doesn't want to address it, talk about it, make any decisions... which comes back on me. Unhappily.

He's getting some sleep at night, thankfully his lab results came back neg for a new infection. But, he's not going longer than about 4 hours now without waking up for some reason. Void, an itch, he's cold, leg spasms, he's suddenly awake....

Mostly it's the memory. Half the time, he can't stand to be in another room away from me, half the time I'm the "bad guy" when I don't let him act like a spoiled 5 year old "Have so many Oreos at 12pm you barf? Sure!"

It's one day at a time. It's watching this cancer take him away, further and further, day by day.

Finding the energy and memories of my own to remember why I do this, why we fell in love.

It's 1pm. Been a long day already.

-The Chaplain is having him call his parents once a week as a "homework" assignment. Maybe that will work better. I have to have hope about something.

Posts at 1am

Wash has had Xanax and Ativan up the yazoo. He was ok for the two or so hours our friend J. was by tonight.
Then he got super angry and depressed again. He cannot remember so much of the short term stuff, and he was angry at himself- and yelled at me.
He asked for the Chaplain to come, it'll be close to 1am when she gets here. He says he's getting "Ready" and doesn't want to "pain me or talk about it with you".

I'm trying so hard to not cry right now.

I brought him some wood blocks and Legos to play with, because he was asking what was "safe" that he woudn't harm himself with.
The Hospice Nurse on call said she hoped it was a bad night, but that these intense changes, and his night-issues might be his way of trying to say he is ready to die.

Fuck.
NOW I'm crying.

Another bad night. Called in for hospice chaplain kevin does not want to talk to me. He is depressed w bad memory loss off & on. He is scared he lost himself.

Harbinger

Bad night.

I had to call Hospice twice.

He was uncontrollable. So angry at me, saying the most horrid things.

Then, he started to hit himself.

He's on Ativan and Haldol tonight.

He's a bit more calm now.

He keeps calling Aelphie "Max". "Max" was Wash's old cat when he was a younger kid, that cat has been passed away for many years now. He sometimes catches himself, "No, Aelphie, not Max!" but...

This is a shit awful and scary night for me.

I'll give more details later, it hurts to write right now.

Stranger than fact

Insurance says- "You haven't been to a hospital for 4 months? RENEW!"

Tashi- "Ok, here's all my paperwork, exactly the same as it's been the last 31 months."

Insurance- "Can you do an in-person interview?"

Tashi- "No."

Insurance- "Can you appoint a proxy?"

Tashi- "YES! Here's the paperwork for it!"

[2 weeks later]

Insurance- "You missed your in-person interview, INSURANCE CANCELLED!"

Tashi- "But, I appointed a proxy, did you not contact them? Can I appeal?"

Insurance- *silence*

Tashi- "Ok, trying another phone number- no, disconnected too. Hmm, this is adding in MORE stress on me this week, I'll just have more asthma meds."

Insurance- *silence*

Tashi- "Ok, now you aren't answering ME or the Ombudsman team. Or Hospice. Not cool, DES."

DES- "Don't blame ALL of us! AHCCCS is a different section of DES, we don't have their direct contact numbers at all! I want to help you, but legally I cannot."

Tashi- *Wheezing*

Insurance- *silence*

Tashi- "If this keeps up, I'm going to end up in the ER because I can't breathe and have a severe asthma flare up/attack."

Insurance- "Well, in THAT case, you'd be approved again."

.............................

Gods, I wish this were fiction.

Sharing the Happy Moments

So much of the last few days has been filled with stress, unhappiness, and sadness.

That got to change today.

...Really?

Scale of Truth (1-Fox News----10-Peer reviewed agreement) We decide to get a cheap bite of delivery from local Pita Place; we call and it's a new guy working. Takes our order says it'll be 20-30 mins. Ok. 45 mins later we get a call from the guy; something happened he's remaking the pitas and will be over in 10 mins. He comes and delivers the order saying, "Sorry, man, I had delivered your order to another home and they gave me a fake $20! I noticed when I got back, and then called you to re-deliver."

He also left our sides back at the Pita Shop.

And kinda contradicted himself.

So.... guesses on what really happened in those 45 minutes?

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.

Union Mandated Break

So, for now, my garden is "done". [Maybe one more veggie or light set...]

I planted all the summer flowers and pulled up the winter bulbs to store away 'til Oct. I have new pepper varieties, new tomatoes, strawberries, herbs.... I have a little solar light turtle, and glass water bulbs to go in some containers. There is new bright colours ALL OVER the back garden. I also got new solar lights on the umbrella, so at night it looks like stars! I got rid of the trash (except the bikes, I want to donate those) and put in new lights around where the wild mint is growing. I'll put pics up after Wash sees it on the off chance he's checking my blog from his Hospice library.

I already cleaned the kitchen and fridge and I'm purposely not cleaning the living room or office. The bedroom is about the same. I'm doing MY laundry so it's done.

I have breakfast leftover, and my friend is taking brunch to Wash in a half hour.

I slept about 7 hours last night, but I'll have a chance for a nap before we get Wash this afternoon.

Time for one more Harry Potter, I think.

I had a good chance to get some rest, to get some things done, to clean, to laugh, to treat myself.

I had my nails done with one of my best girl-friends. I got to have a LONG phone conversation with an old friend. I got to sleep on the whole bed.

I missed Wash, to be sure. A lot. Perhaps not as much as Leto... that cat pretty much has stayed 4 days waiting at the front door for Wash to come home.

I will need more time again, this I know. I will need more rest.

I needed this break though. I needed the time to stay sane, to come back out of depression and Sneaky-Hate-Spiral.

I perhaps don't feel "happy" per se, but I no longer feel vast emptiness. I can see Hope again. I can see myself alive and as an independent person after Wash dies, for I think the first time.

I also feel stronger to be kinder and patient. I needed that.

This was a good thing.

Gentleman Caller

Wash is settled in at the Hospice Home for the next little bit. He got a nap in and told me his first meal there was a burrito and rice. He seems upbeat. I feel a lot better, but still miss him in a way that calls me back to his first few days in the hospital and when I was dragged back home to rest.

So it's just me home now, with the kitties and a 5 gallon bottle of water mis-delivered to me today.

I lived alone from 17-22. Never had a roommate as an adult. Wash was the first person I lived with outside my family. It feels odd, and I can remember so many details from that time, when it was just me (and then Aelphie).

I'm also just having it sink in that it can be about ME for right now. There are others to worry and care for Wash. To help him. To calm him. To make him happy, right now. The now can be about me, for the first time in far far too long as a human.

I'm going to pick some clothes tomorrow, new clothes and not from a donation store.

I have no obligations for Sunday, for the first time in as long as I can recall. Years.

I will wake for me; not for or because of someone else. (Unless the kitties get REAL hungry and loud!)

I can have silence if I want.

My fridge has no meat in it for the first time in a long long long time. I'm beyond happy.

There's a part of me that misses him and thinks of him every second, what he might be doing, thinking, needing- if he is missing me too?

I know rationally he will be fine, and he can contact me if something is amiss.

With time and distractions I think that part will quiet down on it's own, not with my work.

I will have time for me, where it is ok and safe to be "selfish". At least until Monday.

It's been 7 hours since I've seen or touched him. I need to sleep, to relax, to calm down, to emote.

I have my family, friends, and kitties to help.

"Everything will work out in the end; if it has not worked out, it's not the End." - Best Marigold Hotel