Sunday, May 20, 2012

Bell, Book, Candle

Days sometimes begin to blend together. Wash is still on a late night schedule, so when I wake at 6am, after getting down around 3am, it makes for some long hard days.

He had a shit fit this week over the way he sleeps; we've been to specialists and his doctors who have all told him with his brain issues he needs to sleep with his head up higher than his body. This does not suit Wash well at all; he prefers to have his head as flat down as possible and his legs left up- pushing all the blood and excess fluid into his head.
So, he had a HUGE shit-fest about it on Wednesday- even pulled the "If I can't sleep like I want to, why should I be alive?" card. So, after making a plan with his Hospice nurse- because I remember his side effects even if he does not, we all said, "Sure, Wash, sleep how ever you want to." decided to test it out for a few days.
He looked like a chipmunk. His face, his eyes; they were so swollen. He had horrid headaches and light sensitivity. He also had a complete memory black out; whereas he normally is not aware he's missed something or forgotten, with this, he knew something had happened- but could not remember ANYTHING for the first hour he woke up. That scared him so bad he's gone back to sleeping how the doctors tell him.

I'm sad he had to learn the painful way, but with his memory issues, he just doesn't TRUST me all the time, even when I tell him I'm trying to save him physical pain. I don't know how long he will remember this most recent episode, but it's been about 3 days since and he's not make a fuss over sleeping upright yet.

We both had a talk with his folks on Sat; I spent about 30 mins in the morning going over with them how he is, how the week went, the bad issues. I pulled up Skype for him a bit later in the evening for him to talk to them. Lately he has been having some speaking issues; he mumbles a lot, speaks softly, and says things under his breath he is unaware of. So, talking on the phone for him can sometimes be a challenge for others to really understand him. Again, I think since I'm always around him I don't notice it as much until someone points it out to me; but he does mumble a lot more now and it's harder, I can tell, for him to find the right words, and get them out.

I'm starting to feel a lot more numb. I wonder if it's my own way of preparing for what is to come. I have to take things one day at a time, it's just too hard and complicated to try and have a future more than 7 days in advance, 30 months of terminal cancer has just done that to me. He doesn't understand time at all, it all comes back down to/on me.

At least lately I've found a bunch of good (some old) action and adventure movies for us to watch. It lets him laugh, or forget his issues. It's been nice to hear him laugh lately, he does it less and less.
I hate, I hurt to watch who he is slowly draining away from him.
Brain Cancer just drains away the man I love.

Frak cancer.

//Hospice Helper P. is coming over this afternoon to play with Wash for a bit and help him make some cardboard eclipse viewers (on the off chance we might be able to see it this sundown). Wash loves shit like this, but he's not been able to remember it. I'm hoping we can see it in AZ where we are; likely this is his last chance in his life to see a solar eclipse.

1 comment:

  1. Don't be surprised if your own grieving is less than you expect when Wash dies. It sounds like you're doing a lot of anticipatory grieving right now.

    Be that as it may, we're all here for you, no matter what.