Hey, Jude

I ended up calling and talking to a Hospice Nurse (on call) for a while around midnight/1am.

He's been in a fairly ok mood lately, but severe short term memory loss. Things happen and his brain just fills it in however he can. He's almost incapable of asking for help now.

He's been eating less and less for the past couple of days. Seems about 3 snack sized "meals". He likes to eat breakfast still; but I honestly wonder if that is not because it is ingrained into his routine; "I have to take pills, I have to wash my face, I have to eat" type of stuff.

I have a lot of good tasty stuff he still can/likes to eat around here. There are healthy things too, but, with what is going on and the Nurse's advice, I'm no longer pushing or reminding him to eat.

It's his body. He is just taking less and less more in.

He spends a lot of time with LEGO sets now, movies, and he's trying very hard to finish a Cherie Priest book. I don't push him or remind him about naps anymore (he had one before TDKR, but I wanted to make sure he'd be awake for the whole movie) and I need to extend that to his food too.

He hasn't been "out" for a walk (longer than front door to mailbox) in a few weeks. He's not strictly bedbound yet, he can still move around some, but he says there is less each day to wake and fight for.

August 6th is his birthday. I know he wants to live long enough to see 28 years.

This part is so hard. Letting go.

I've spent 34/35 some odd months working to keep him alive and happy, and now, my focus has to just be his happiness at the end.

Hospice P. is coming over this afternoon, I've asked him to help Wash dis-assemble his large 4" (diam) telescope so we have more room downstairs for him. After that they can work on Helms Deep for LOTR LEGO.

Thank you to everyone who has been sending us postcards, LEGOs for Wash, and kind thoughts and prayers. Thank you to the few people who have been in shoes very much like mine who have reached out. My heart aches you know this pain as well, but I see the kindness in reaching out to remind me I'm not alone. Thank you.

We got rain yesterday. The kitties were happy. Aelphie has been like superglue next to me over the last few days, and Leto too has been making sure he's not more than a metre away from Wash at any one time. I think they know something is off. Lots more cuddles and more cat hair on everything. Worth it.

I spent three days fixing my filter pump in the big fish tank, then those 3 days spent cleaning out the tank over and over from all the algae growth, the dead fish (2 died. I have not told Wash and he has not noticed.) and the gunk that built up from the pump not working.

Thankfully for now I did not have to buy a new pump, only disassemble it and clean it.

However, sadly, I did have to get a new light-block after ours locked into the "on" setting and would not stop flickering. So, clean tank and new lights for the fish. I keep the decorations for the tank on a rotation so when they get dirty, I have clean ones ready to go and can dry/clean the rest in our hot direct sun.

I also cleaned out the baby tank and transferred over the 3 living fry from the baby "pot" to the fry tank. 2 of them were up and swimming, the 3rd not so much. With fry though, they can be tricky, so I won't think it's dead until I observe it not moving for a full day or being eaten.

Fish-keeping helps my mind sometimes. I'm not getting more, just replacing the few that died, so my school doesn't shrink and die off even more.

Hour by hour, I'm trying.

I'm hoping he will be feeling well enough this week to Skype with some friends and cousins. He's wanted to for a while, but gets too tired before I get the chance to set it up.

Balance

I've had a few more aides around the past couple days to help keep my off my foot and help with Wash.

I've been resting a lot and trying to think about the "next step" with all of this, our lives.

I never heard back from (awful) MSW last week. Or even Monday.

He wants to meet today.

I have to try and be calm, but my inclination is to yell him the fuck out at not responding to my page for him Wed, the 2-3 calls I left Thurs, the 2 voicemails I left Friday as well....

I am not happy with that area of Hospice. Everything else they are awesome. But our most recent Medical Social Worker is just.... patriarchal.

Neither Wash nor I are happy/get along with this guy.

I also spent most of yesterday while I was in bed working to sniff out a (brain cancer) faker. No, I will not link to anything right now, I'd rather not give the person more attention, which is their goal.

The anger I felt though, that someone would fake something so horrible that has personally effected me- it was more than eclipsed when the person was exposed at the very very very least as a lair about brain cancer. That let to a new kind of "vindication" happiness.

Wash has been building LEGO sets. For like, a week straight.

He shows no signs of slowing down or stopping. There really is not much he can "do" anymore, and LEGO lets him build, and pretend, and be an architect again, explore his Steampunk side, and he can happily regress to top! They're pretty perfect for him.

We had a few guests come by, it was nice to catch up with my friends.

I am saddened that everyone else seems to "grow up"; they graduate, they get engaged or married, they get pregnant, they buy a house, they have their first child, move for a new career, GROW.

They have the oppertunities for everything I *can't* have.

I am 25 still.

I didn't graduate, I don't know now if I ever will. Wash and I tried, but 3 miscarriages was the closest I ever came to that "life step". We have so much debt, I don't even dream of owning a house or property in the future.

My life is caring for my husband until he dies.

Then... what?

That's the part I can't see.

I can't imagine a future with *me* in it either.

Lost Tashi today.

/Good news, down to Advil only for the toe pain. Which is ok as long as I'm not standing or walking for more than 30 mins. 2-3 more weeks with a cane though.

Both reached for the

I have a hairline fracture on my left foot; right along the line where I have broken the toe before.

I think if I had not broken it in the past, it might have just been a bad sprain.

So, I'm supposed to stay off the foot as much as I can, no taping it- still too swollen, but ice and elevation.

3 weeks of a cane or crutches and it should be fully healed 6-8 weeks.

Thank you to everyone who is sending us love, postcards, and (for Wash) LEGO sets. He LOVES them. (Thank you!!)

He's playing with them now, much calmer and happier.

Last night was something truly terrible. This week has been a challenge for him. From the cat incident, to the falls. He just got SO ANGRY that the people around him can't "cure" him. That he won't get better. This is in his brain.

Seemed to just hit him all at once, and he just overloaded with anger and sadness and depression.

He would not take his medicine. He would not calm down, he was restless.

Said I needed to keep the cats upstairs because he did not trust himself around them or me.

We slept apart. It doesn't happen often in our marriage.

Hospice said I had to try to respect his wishes as a patient, because he was so clear and mentally present at the time, to be alone. To let him be downstairs without me watching him. He has a right to not be "safe". It's a hard thing for me to get used to, but they are right.

It was not easy to sleep without him by, wondering and worrying.

He was better in the morning. He wrote some last night, and also yelled for about 2 hours while he was downstairs. I have no idea if he was conscious he was speaking aloud, let alone yelling.

I got my X-rays this morning, he had S. as his aide/caregiver. Also gave me a chance to get by the post office to pick up some nice Star Wars LEGO sets that were sent to him. He will offer up to the nurses, "I know I'm regressing, but it makes me happy, and they're just so FUN." At this time I'm not worried about him choking on a piece, so I don't mind a million pieces around the house because he enjoys being able to still create and control in his little LEGO-land.

He needs that, and I'm glad I have the help to give it to him.

I do have a script for painkillers for the next little while that my foot feels frakkin' awful. I apologize if this later makes no linear sense.

We're going to watch "Treasure Planet" tonight, Wash has actually asked me. Like he's taking me on a "home date". I'm going to do my best to stuff down my emotions and show him I'm enjoying it, even if I'm in pain. He doesn't really understand anymore that other people hurt and feel physically and emotionally. It's all about him, all the time. That's ok. That's brain cancer.

But, he won't understand and doesn't understand when I tell him "No, that hurts me."

So, I have to smile tonight for him, because he needs some love and a memory of a smiling wife.

Rise above the pain to give him that.

It rained last night. I had a hibiscus blooming this morning. I hope it helps the tomatoes and the watermelon plant. It will be a little bit before I can water my own garden again.

Margins

My mum came over for about 30 mins this morning to watch Wash while I got to take a shower.

So far, that's the best part of my day.

I discovered when he used the bathroom last, he locked Aelphie in it- and the one with no food/water/litter box. So, the new $10/each rugs I had to buy to replace the ones Wash accidently covered with his human pee and poop, one was now covered in CAT pee and poop.

I'm attempting to clean it, hopefully it will, before I just throw away another rug. [I gotta have something in there so he doesn't slip!]

While I was doing that, I heard a large THUD and a metal clanging, so I ran upstairs;

Wash was crying and apologizing, saying all the lights in our bedroom did not work, so he wanted to check the breaker box, but when he opened it he couldn't remember what he was doing! And, thus, the tears.

I had him sit downstairs and I took a look- no power outage, he just did not flip the light switch/panel "on". He forgot how to turn lights on from a switch.

That's the kinda day I'm looking at. I have P. the caregiver coming this afternoon- my mum has said she's going to take me to a movie, let my head clear a little bit.

So. Day by day.

64 minutes

That's how much time I have right now to process everything, cry, think, deal, cope- before Wash wakes up from his nap and needs me to help him move.

Wash did not have a good start to his day. He fell a few times (thankfully onto the bed) when he first woke because he forgot he has trouble standing/walking now.

He was angry. He was confused.

He was a stranger needing help and ready to fight if anyone tried to give him (help).

I called the Hospice nurses and got him some meds to help him calm down. The Nurses wanted to send one out to check on him, and our (awful, new) Social Worker as well.

My mum came in the late morning to help me watch him. By then, he had mostly calmed down and was back to playing LEGOS. That seems to be one of the only things these days he enjoys, building his little LEGO worlds. [a friend sent some Star Wars LEGO sets last week he's been working on]

We had P. our afternoon aide come at one and the nurse was here at 2:30. The (awful) social worker was late.

We spoke like we did literally yesterday about his falls, about his short term memory issues, about my concerns for safety, and his concerns for lack of control....

The talks did not really resolve anything, but I have a lot on my plate to think about and figure out.

Bottom line, he's not safe upstairs anymore. So, I need to figure out how much space I need to make, find a mini-storage place, pack/move/box things up, get them moved, get the downstairs "safe" from sharp corners or things he could pull down if he fell, and figure out if I will be sleeping with him in a bed downstairs- if so WHERE- or do we need to keep space for the couch AND a little standard single bed? How much can I move before his brain freaks out at the changes? How much can I move before MY brain just cries and breaks down at the changes? The Aspie part of me has been (in my brain) hiding and crying in a closet for two days now. That part of me is unquestionably despondent at change.

Then, this all has to happen when Wash is somewhere safe; so do we try and get respite care hospice stay for him again, or does he present more of an "acute" need and thus can go right in to a hospice home for a while so they can get his morning stable and figure out how to best help him move around without posing a risk to break bones?

I won't even hear back about the possibility of a respite stay until Monday.

I feel like I have no time. Like this is all happening now far far too fast. Even beyond my control, my ability to keep safe.

I can't cry in front of him. I can't mourn. And I cannot get my head to actually make a godsdamned decision while he is here, while I have to watch him, to nurse him, to be strong.

Not to mention my asthma, which this week has been kind enough to flare up for me (smog and stress, my foes) so even if I have an hour while he sleeps, when I try to let some of this -emotional blockage- out, I just end up crying a few sobs, and then gasping for air as an asthma attack hits.

I am quite thankful for my mother. For her being there for me, for us, today. For the hug. I don't get hugs from Wash anymore, kisses really either. I think that part of his brain, himself, that could, that wanted to give ME comfort, I think it's gone.

I'm out of words. My brain just locks up. Rationally, I know what is coming down the line, I know the process, I know the stages, I know the signs.

But, as much as I try and strive, I'm not a fully rational creature. I have emotions.

I have memories.

The pain is overwhelming. I do not want to imagine how much worse it will get, how much more I will have to deal with at the very end.

The tunnel seems much much shorter now though.

It's not a light, it's not something peaceful, beckoning, calming.

The tunnel is ending and I can hear the train coming at me.

I should probably also eat something today. Nothing appeals to me.

No more good/bad days. Now we have good and bad hours in each day.

I hate myself in the few moments when I wish it was over. Because I'm not ready. I'm not ready.

Not even Joss, Jane, and Marti can stop the tears today.

'Where do we go from here?'

He can't run, he can't walk, he's getting ready to stop crawling. I wish there was a cure, an answer to pick up my Browncoat and carry him.

Bilbo's hiding from the ProudFoots'

So much stress and drama for days.

Tears.

Late night Hospice visits from nurses.

Thankfully Andy* and Lynn* have been around a TON this past week, outside their own stuff to help both of us. Errands, movies, laughs, from the little to the big. It's vital to have those friends who will be there for you. Like making a commitment to Wash and then keeping it. For months/years. He needs that in his life (outside just me) and at least we have close friends who can fill that need.

Same with being respected. A patient says, "I can't do this", it's best not to question. Unless you are the patients' doctor.

I've met some awesome Hospice workers this week. I'm very thankful for that.

Wash has asked me to keep specific things out of public for right now.

I'm glad for friends at times like these.

//

*Not their real names

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.

Sharing the Happy Moments

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

That got to change today.

Crashing out

Dying is not cheap.

Just got the MediCare copy of Wash's bills since he started Hospice (We have at most a $5 out of pocket co-pay for some things, Hospice bills MediCare directly for the rest)

So, I've shelled out about $1000.00 in out of pocket/uncovered expenses for Wash's meds per month.

Of the covered /paid by insurance stuff;

From mid January when he went on service to end of April, MediCare has now paid $21,210.42 for Hospice services.

Even dying at home with Palliative care ain't cheap.

/Yes, I'm glad we're 95% covered, but it's still amazing.

Breathtaking

We've had a good couple days. Nothing real different or changing about them, but perhaps, my own attitude.

I've been trying all day, and will continue to do so, to be positive and kind and thankful. I can mourn on other days, today should be for unity and happiness.

We were getting ready for the Eclipse this weekend; Wash could not remember if it was a solar or lunar one so I had to keep telling/reminding him. At the same time, the more details he wanted the more I also began to process that likely this would be his last one he ever saw. We're not due for another 17 years or so; as far as I know David M. Bailey went about 15 years with GBM. I don't think Wash will have that luck.

When we were kids we made the pinhole projectors to watch the last one on; around '91 I think. This time, as adults, we actually had proper equipment; high grade welding masks.

Wash used to weld; back as a side hobby when he was in Architecture school and interning. He welded me my throne in our backyard! Talented guy; and he had his own (cheaper, basic model) mask. But, it's through a shade 10-11 so pretty good for protection.

A few months into us dating and I spotted a mask someone had not-properly thrown away and cleaned it up and gave it to Wash; it was a super nice model graded to 13-14, solar/electric so it has a sensor that turns on depending on the light intensity. I wish he had had more of a chance to use it. So, the masks have been sitting off tucked away for a few years and now we had the opportunity to use them! I set up a live channel with one of the telescopes in Cali/Grand Canyon and then we checked outside when it began.

It's a different vision and moment to be able to safely look at the sun and watch a solar eclipse. With the masks the sun took on a green tinge, and it was moving and beautiful in words that seem to escape me, at least in English.

We could see the moon, the shape, the form, the absolute feeling of utter insignificance in the universe... to me it was a Sagan appreciation moment.

Seeing the moon; our small sattelite, grow in perception to the size of the Star; the Sun... it amazes my mind in a way to place a new perspective on things. Short of firsthand going in space and seeing the Earth reduced to a blue marble, it reminded me of some of the first nights I watched the stars in a telescope. There's a wonder to seeing other worlds and objects- so far away that some are dead by the time we even see their light here, it moves my heart. To know that I am so small, so tiny a part of everything, but still wondrous and unique in my own way is moving.

We had a bunch of the neighbours come out and we shared the masks around so others could see it. Our friend Andy* came by (he's wearing the Bald Eagle mask in the pic above) and watched it with us. Met a few folks who live at the new retirement home down the block too! It was friendly, and both Wash and I got to share some astronomy lessons with those around us.

The "ring of fire" for us happened quite fast and I only caught a short glimpse. I was still moved. I know Wash enjoyed the whole thing, being with me and new friends, getting to teach others, and seeing a wondrous event for the last time.

I feel humbled. Looking at the sky going dark, the moon covering up the sun, I could image hundreds of years ago the utter fear that might inspire. The spark of human creativity as well; the need to know why it was happening, what was going on? I felt connected to every other human across the world who has seen our Earth go dark. Felt the wonder of the great WHY, felt connected to know that others were watching the very same thing all around our blue globe.

A great and utter insignificance, and yet, with every thought and feeling, a personal importance and presence.

As the Sun, Moon, Earth, and all stars exists, so too do I. My thoughts remain.

I think I have a greater appreciation for who my husband was today. Why he was so utterly devoted and passionate about space and beyond, exploration and discoveries, and the never ending pursuit of personal knowledge. His passion was certainly attractive when we met, and to some degree it remains inside him, but I wonder if yesterday when I was watching that eclipse, if perhaps as well as with the mask, I was watching it for the first time with the wonder and eyes of my husband and best friend. With the feelings of someone who wanted his cremains sent out in little rockets; with the hope to someday join the rest of the mass and energy in space.

Wash appreciated/s the Cosmos almost like no one else I've known. It comes out in his love of astronomy and his own telescope we have, as well as his love of watching and reading about space- fictional or not. He writes short stories about being in space, and they make up the bulk of our book and video libraries.

I will hope when the next solar eclipse comes around that if my husband is not standing next to me that his cremains, or even just his energy moved from the mass that Once Was is somewhere in our universe, watching the same show, seeing the stars and planets align and feeling joined to it all like I do.

For now, I think his passion lives inside me. I can hope to do it justice.

Even more so, I hope to live to see Wash in some way, sent to space.

-------------------------------------------------------------------------------------------------

Trivia time; Wash's most often read books? (not anymore, but before he got real sick)

-Cosmos by Sagan

-To The Stars by George Takei (autographed too!)

-The Star Trek Companion (he's got one for each series)

-The Foundation Trilogy by Asimov

-Fallingwater Rising

-Dune

-Firefly, Still Flying

The man loves the universe.

Missed

Had a few good days, some good moments this weekend.

I can't yet figure out if I should keep up my small journal/notes and publish them, or limit to when I can make a real fleshed out post?

It's hard to watch him die. To watch him slip away bit by bit. He had about 3 days/nights/period of hours in the week where he's been very "Wash". His personality just keeps fading. He comes around for friends, to talk, and always to play, but less and less.

Lately he's been making "jokes" about suicide. Hospice says this is his way of coping with some issues relating to his coming death. It's so so so so so tough for me to hear his "jokes". I cannot laugh or see humour in them.

It pains me to hear from so many people that they think I'm getting burned out or over-worked. These are almost always the same people that don't offer any real help or solutions outside of, "I'm worried."

I'm frakking worried too, but there's no one else. He loves me, and a part of his brain hates me too. He sees me as the "reason" why he's in this place, why he has so many rules, why he can't instead of being able to remember or place that emotion properly on his cancer, not the person who has to keep him safe from himself.

It's hard.

Last week I fainted because I ended up going 30 hours without eating. I eat about once, maybe twice a day now almost always after Wash goes down for bed, 10pm-3am. The rest of the time I'm watching him, which, even if I have a moment to cook, prepare, and eat a meal, I'm almost never hungry. I'm just so stressed watching and caring and dealing with his hatred and anger at me, I don't want to eat. Also, a lot of the food I buy is for him. I forget that I'm a person too.

I yelled at my brother G.* this weekend when he called right as I was heading into my first shower in about 5-7 days. He wanted to "chat" and I wanted to take advantage of my 15 mins alone to shower for the first time in a week. I guess for him it's harder to grasp since he lives alone and showers for 40mins every morning.

It's becoming so hard for me to explain to the people close and around us just how much Wash's cancer effects me on so many levels, how I'm so tied into him and his moods for the mere fact of being around him 24 hours a day 7 days a week for 30 straight months. Even most prisoners get a "break" from their cell mate daily. I don't like it, but I can understand that Wash's anger and rage are going to come out on the person around- me.

Dying is not easy.

Looking for Bat Country

It's been a hard week of truths for me.

I've had some good long talks with Hospice, and some friends who have literally been in a similar situation with brain cancer.

I've been holding myself trying not to fall into a depression. Trying not to lose the functionality I still currently have. I feel so tired, so much of the time. A deep exhaustion.

2009 was the scared shit year.

2010 was the year of fighting, chemo, and insurance pains.

2011 was the plateau. Was the "holding pattern".

2012 has changed. The way things work, the way he thinks, changed.

He's not going for more chemo. He made it very clear a long time ago, he could not face that fight again. Losing so many days to chemo, sickness, fatigue; for something that wouldn't raise his Quality of Life.

But, that part is hard to focus on, even though I remember when it's now in my face. When the inevitable has started to really happen. As much as I appreciate you, Dear Readers, this is still a way for me to talk to myself, to preserve these thoughts. A record of Death.

I don't know how to tell the people who are not around him so often how he is. I don't have the words that dull the sting. I live it, every moment of the day; but telling the other people who love him and care; so much so it hurts them more to see him like he is than stay close.

I just don't know anymore; I don't know what he wants. It's so hard for him to really grasp a concept to be able to articulate his desires and needs now. My biggest worry and fear is he is no longer getting the comfort he wanted from living with me.

I am so tired, but so guilty that I'm not doing "more". I can't even begin to know what "more" even is, but I still feel like it's not enough for him. I'm not doing EVERYTHING I can to make it more "fair" for him.

I've cried a lot this week, perhaps more than in the past month combined. It's terrifying to feel like I'm really losing him again. I have flashbacks so often to 2009 and the summer and the tumor, and how scared, how perpetually frightened I was then. He wasn't working and my hours were part-time. Money was always a worry. We were fighting over stupid things and I just did not know why. He was withdrawn, angry. He was no longer laughing. It was dark. I remember our huge 4th of July fight. I remember wondering if, on the Thursday before we found the tumor, I would end up divorced before a year of marriage that know one even knew about?

All of that keeps coming back.

Some days he feels/remembers/thinks he is in a time around 2005-2009. He's vaguely aware time has passed, but it's such a hard concept for him; time.

It's so weird, and so painful to see his brilliant brain doing this to himself. He knows me, but not always who he is anymore.

He has not been my "husband" in a long time. He cannot even remember to say "I love you" to me daily. It hurts, but I try to keep the pain down, like a bruise. The scary part this time is not that we don't know what's going on. His medical team and I are fairly sure there's something going on again; most likely another tumor(s). Since he doesn't want "treatment" there's no point even checking right now though. Schrodinger's Tumor. Better to just not be imagining what is there; to be unawares, and he is.

There's the smallest kindness in that; I don't think he is very aware at all just how much has slipped away or that there might be a tumor. Well, I guess today he was talking to the SW and thought he was back in 2009 and knew he had a tumor, but didn't know it was removed.

He gets a lot of details confused.

I knew this time would be coming. I knew from the time he went into the ER and I saw his CT scan. I knew from the Oncologist, the Radiologist, the Neurologist, and the Hospice team.

I knew it when we would have talks about his wishes, and I knew it when I had to ask for the urn to be made.

But, facing the end, it's hard.

I know statistically if there's another tumor and he doesn't treat it will be a couple weeks to maybe 3-4 months.

It's hard to think past tomorrow, maybe a few days from now.

I keep feeling these conflicting portions of myself scream out that I'm both way too young to deal with this pain, this heartbreak, this loss, this responsibility, I also feel so so so old, so aged, so seasoned to certain ways of life and Death.

The Social Worker said it was nothing he felt I had to address today/tomorrow, but he'd read next week or help me write.

It's terrifying having to be so strong.

I'm thankful for the bit of local, physical support I do have, but I'm trying to be open and vocal about needing more.

Things and times I truly believe will only get harder from this point on.

I keep wishing I had my best friend, my husband with me to give me strength.

Terminal brain cancer in a 25, now 27 year old; it's unfathomable cruelty to watch.

Acute

The pain in my heart is intense. It is overwhelming. Tears keep smearing on my glasses, but I can't write without seeing. Too many typos.

I did something last night I regret. I don't often have regrets, really never, so this hurts like a new kind of pain I'm discovering. I feel used. I feel like I have not in years and years. Dirty. Bad. Selfish.

I allowed myself too much hope last night. Too many thoughts and ideas of what Once Was, not what Is.

He can't even keep his days right anymore. The first thing he asks me when he wakes up now is no longer "I love you. I'm happy to wake up next to you" sort, now it is, "What is today, Tashi? What do I have to do? Am I seeing a nurse or doctor today?"

Physically he has sometimes 2-4 hours in a day where he is or can be active. Usually about 2 hours at a time. He sleeps a lot, and watches a LOT of movies/streaming stuff. With his memory issues he's finding it harder to watch TV with commercials, by the time the show is back on he's forgotten what's happened. Watching on DVD or streaming helps with that, he can keep his focus better and enjoy watching.

I try to read to him when I can. He asked me the other day to start getting the daily paper; getting news from blogs and sites is too confusing, so he wants to just look at the paper. He has not kept up with the news in years, I fill him in on the topics of the Daily Show and other things, but emotionally he can't distance himself; it's why I stopped reading him news years ago about the Affordable Care Act, or other AZ laws that have been enacted in the past few years which literally can kill him.

It hurts. I had a moment yesterday to stop that hurt. I took it. I regret it.

I feel like I've cheated on my husband and the man I swore to love to his death, with I'm not even sure. Who ever is wearing my husband as an Edgar suit right now.

I wonder if there's another tumor hiding in there? Eating up my husband, my love, and leaving this poor shell that doesn't even know he is being hollowed out.

He lives Groundhog day every single day, and only barely knows it. It hurts to watch how far he has come down. It hurts to see him give up the things that made him happy because they are just too dangerous or he can't be trusted to properly supervise himself. He's in an Adult body, but he cannot take care of himself. In any real way, he can't.

I know he has Hospice folks in almost every day to check on us. I worry they don't see what I do. They are not here 24/7 and don't always see him fall apart- lately he's been letting help in so they can. I worry since Wash is able to project himself into some level of "normalcy" for sometimes an hour at a time, people don't believe me. They don't see how much he's lost of himself.

Then again, I can't keep my own house clean anymore- not and watch him- I am falling to pieces, and I wonder if they can see that he cannot help. He wants to, he does! But saying you are going to do something for 5 days in a row, staring at it, but not doing a thing.... this is what he does. He cannot be honest with himself or with me. That hurts so much.

I could make provisions, I could make plans, I could ask for more regular help if he would be honest- first to himself and to me. But he cannot. He cannot see that what he says he never does, he has no follow through. That's the cancer. I don't know if it is cancer or Wash though, that does not want to face the truth, or even hear it from me.

It's a sharp Guillotine above my head. He was once an adult who had a complete brain. He was a genius. Now he cannot remember what day it is. He's 27. I infantalize him for safety, win/lose. I treat him as an adult and spend all my time fixing, repairing what he's messed or broken win/lose.

Either way, it is painful for me, and then I still have a blade rushing towards my own head.

Too many tears.

Summations

And THERE is it. 2 plus hours into a not-fun-at-all talk this morning, continuing from last night, and Wash has said it out loud, again.
"Because I need to DO SOMETHING, MAKE SOMETHING of value, or why else stay alive? I'm worthless just existing."

He truly feels, believes, and was told from a young age on, if he cannot be "productive" in society, he should just die. [Why yes, he did read a lot of Ayn Rand]

He's already spoken to Hospice about this before, and his Chaplain and Social Worker, and Therapist have all said that is not true, but he really fucking believes that if he cannot work and get a paycheque, he should just fucking die already.

I told him earlier the least he could do today was to be honest to himself and us around him.

He's been so verbally abusive today.

Brain cancer can suck on Sideshow Boob.

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So we had some nurses come over this afternoon and talk to Wash, and he spoke very honestly about his suicidal thoughts and wishes, but was able to say he would be "safe" for the next day and not an immediate danger to himself.
The nurses adjusted his meds, and had a social worker come over after they left; she talked for about an hour with him. She was able to figure out he was triggered into this most recent cycle when he was on the computer last night and saw a little side-ad for architecture college degrees.
So, we talked of a few ways to help when he was triggered, and how to distract him from the self-harming or suicidal thoughts.

Our friend N. is coming over to take him to a burger place for dinner, and my brother is coming over the evening to help me watch and distract him. I still want someone to sleep over with us tonight though, and someone in the morning.

So.
Hospice rocks, cancer sucks, and this is emotionally draining. Also, my intestines hurt again.

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Wash has said he is ok with me posting these portions of my more private entries from the last day.

He wants people to see what it is like.

He wants others to know what happens, physically and mentally.

Even in his most trying times, he wants to be an example, and it breaks my heart he cannot see what an effect he has had.