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