Not the best morning today. Bad short term memory for him and a lot of anger and rage. Like a 4 year old in a 6 foot tall body. Peaceful thoughts please.

Eye of the Storm

Wash had some severe pain this morning.

Literally screaming, waking me up.

Hospice had his nurse talk to us and he got pain meds. They did help. He had almost a full breakfast and a snack.

The nurse checked in again this afternoon. It could be a side effect of one of his meds, but perhaps not likely as nothing has changed in about 2 weeks.

He had more pain medication in the afternoon when he started feeling the stabbing in his joints again.

He's been asleep now for about 2 hours. He said he was feeling (after meds) "I don't hurt, I feel warm and fluffy."

Aephie is catloafed at Wash's feet on the bed. She and Leto have been taking turns today guarding him.

I'm going to try and get a short nap in today. I have a horrid feeling I might not get much sleep tonight.

He had to put the LEGO building on hold for a little while, moving for him hurt too much.

Hospice is being great right now.

I am very, very tired.

Bad morning for wash more pain than he has had before. Waiting for hospice nurse. Send good thoughts prayers please.

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.

Reasons

Reason 4848474575500299292827 why I love my husband, Wash; he gets a LEGO set for a Star Wars fighter and 15 mins into building he says, "You know, Tashi, with a little tweak, I can make a Mark II Viper!"

30 mins later; "Tashi! If I turn this part upside down it looks like a DRADIS for Kara's Viper!"

....This guy. I love him.

//Guess I need to get a copy of Caprica for him to watch now. We've done BSG twice this year.

Addendum to previous post

It's Taco Tuesday.

3rd time he was reminded of this Wash got REAL excited.

So, today, there's tacos to live for.

One day at a time.

One, two, Princes

I've been dealing with my depression lately.

Wash is not strictly "declining", but, it truly does to me seem like there is "less" for him to live for. He's fighting, but for what? At this point he says he wants to still see TDKR. He wanted to see "The Hobbit", but I think the trailer is really honestly all he will be around for.

Brain cancer is so odd. He can complete two LEGO sets in a day, or in two weeks. His brain can still build, but a lot of the other stuff is starting to go.

I have not gotten to the point of bibs yet, but he's essentially using an "adult" sippy cup. His sense of co-ordination is worse even than mine. Thankfully no falls lately, but he's had to be better about using his cane or walker for EVERYTHING.

It helps though.

Our awesome neighbours continue to be awesome. A couple of times when Wash has had an aide over I've gone to just chat or vent at their place. (they are in the same row of townhomes we are) N.* has even traded short stories with Wash to read! She still helps us water our garden and cooks occasionally for us.

He mostly says/does the same thing over and over now. We watch the same show or movie 2, sometimes 4 times before he "remembers" he has seen it before.

"Yes, dear. Thank you. Ok, Wash. Yes. Do go on."

His anger comes in longer periods now too. Sunday night was fairly awful. Even after speaking to a Hospice Chaplain on call, it took almost 2 hours for him to really get a hold on his own emotions.

I dislike feeling what I have been lately. I worry way too much. I wonder if/how happy he is.

I worry about his rage, his pain.

I wonder if the thing I wanted most with my heart on my birthday almost three years ago is something I have to let go of now. I want him to be living because he wants to, not "for me". It's much harder to say that out loud though, than merely to write down.

He's going to attempt to see and talk to his mum this week. I don't speak of his family on the blog anymore at Wash's specific request; he doesn't want some details "out" right now, he still doesn't want to share/show his emotions.

All I can say, all I will say, is please Dearest Readers, send him thoughts of love, calmness, or even kind prayers.

Mostly what he does is say he wants to do something, but with his "drama", it is like there is a block preventing him from ever moving forward.

What I want for that situation does not really matter. I want what is best for him, what his mental and emotional well being needs. Not what someone else might want for him.

Done. Moving on.

So, when he is not taking anger out on me, he's been enjoying some time with his aides and building and filling our home with LEGO models. The cats do not seem to mind, and he really enjoys playing after he builds, it's nice when a couple hours go by and everyone is happy.

I've been trying to take some "mental health" breaks for myself as well, actually get out of the house when I have an aide to help/watch Wash. I know there is worry for me after he is gone. I worry about myself; enough to worry but not yet enough to do much more than starting to see I'll be ok if I leave him for an hour with an aide.

The future is still too painful to think about. The 'What After' part.

I've seen Death. Changes happen to a person.

I'm wondering if it's just brain cancer, or if some of Wash's changes are him moving closer to his end?

So many questions, so much wonder, so little certainty.

To some specific people who have been reaching out to me- thank you. Thank you for telling me I'm not alone in this. Some nights and early mornings it does feel so isolating, but I do try to take comfort from those who have gone before.

The very worst thing to me about GBM? Even more so than knowing at some point I will lose the man I loved and hoped to spend the rest of my life with, is knowing there is still no cure, and there *will* be others who come after who have to fight the same battles. The ACA changes some of that for those Americans with brain cancer, but these tumors hit people around the world, not just here.

I feel like I'm the only one, but at the same time, I hate knowing I'm not.

I would not wish this even on Jan Brewer.

There's a feeling of change in the air; friends all moving, new jobs, new schools, new children/life in the world.

I feel like we are the only ones stuck still while everyone else moves and dances their lives around us.

His birthday is in two weeks. I know (or is it hope?) he makes it that far. Live hour by (hopefully a good) hour, day by day that he wakes up for, and week. At this point, I'm not sure how to think or live farther ahead than that.

/Trying to write my depressive thoughts out of myself today. I hope it works.

*Not real names/initials

Ugh tashi! Hit my broken toe again. Hoping i did not re break it or make it worse. Wishing i had more coordination. Ice ice baby!

JTOP gets a Shoutout

Wash had a tough week. He was very much himself, which can sometimes be painful for me; he knows how far gone he is, how much he has lost.

The up side to that is he was feeling in control enough to finally go see "Brave" tonight.

It was lovely. We went with a college friend of mine and got to catch up with her for a while after the movie too. We might start meeting weekly to chat and catch up.

My morning was hard. I was crying a lot and trying not to sink into a real depression. Since Wash has been more "present" he asks me a lot of things that make him sad; and me too.

It was a wonderful blessing to get to go out tonight.

We had a packed small theatre, but the kids were pretty well behaved. More so, the parents were super attentive to their children and kept them quiet and were very careful to not interrupt or disturb the other patrons when they had their 6-8 potty breaks. There was even a baby; but ze slept through almost everything and when ze whined a little bit, zher mum took zher right out so as not to disturb anyone else.

Perfect way to do it.

Wash was dancing in his seat the whole movie through. He bumped my broken toe a couple times on accident, but I just dealt with it.

The good part for me was the way he would reach over to hold my hand during the movie. The way he squeezed it at the few scary/dramatic scenes. His smile at the end of it. Then, the best part; during the credits (of course we stay for the Easter Egg!) Wash spotted the name of a Pixar worker he knew and acted with back from the bay area. Apparently, he also had his nickname in the credits, which made Wash literally stand out of his seat and "Whoop" in joy for his friends' success.

That's the kind of person Wash is; he cares and he loves and enjoys seeing his friends and family succeed and be happy.

We came home and saw some friends sent him 2 more LEGO sets. Now he has some Ewoks! He really does adore those blocks, and they do seem to help his cognition. Double happiness.

I started my day with 90s music, good comedy, and Phil Hartman to stop my tears.

I'm ending my night with bagpipes echoing around me, a huge smile on the face of the man I love, and a feeling of love and friendship in my heart.

Hope comes in many different forms to me.

I'm starting to feel some again.

You have a Friend

Ignoring the pile of bedding and the apparent crappiness of this quality, Wash is LOVING the LEGO sets.

Please send more LEGOs he says.

.... he was *this close* to being an architect graduate. He HAS to build. LEGOs are safe. We're all happy.

Longer post to come later, it was a long night; Wash had his first ever nigh terror (with me).