Friday, July 6, 2012

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.


  1. I'm so sorry, hon. You and Wash are always in my thoughts and prayers.

  2. If it brings more good hours to you both, I would love to send more Star Wars Legos for Wash. I have sets 8089 (hoth wampa), 8098 (turbo tank), 8099 (midi destroyer), 8093 (plo koon). Would he be interested in any of these?

    1. Any or all. I checked and Wash has the Star Wars sets #7913 #8092 #9489 so any others I am quite sure he would play with.
      Thank you.

    2. I will send some out to your PO box first thing Monday. Might have to debox a few to fit them in. It's a small thing compared to all you need.

  3. I've been following your blog for awhile, and I can't grasp how intense this situation is. If I still lived in CA I would personally come help you move furniture to make the downstairs a safe haven. Since I'm on the East coast you have my prayers and I check daily to see what you have managed in such a short time. I know there are many people like me who follow your tribulations, and many who are constantly sending what little prayers we can for your strength and Wash's peace. I know the words don't have much weight but we're out there in your corner thinking/praying/hoping for you. Best wishes.

  4. Let me know if you need help moving stuff.

  5. Thinking of you both. Can't say anything more, because nothing I can say from the other side of the planet will help.

    But it is so utterly unfucking fair that you have to deal with this, both of you.

    Just... stay strong, get through this, and we'll all be here to support you after the worst has happened and you need to pick up the pieces.

  6. I hear your cries, I extend my hand,I send hugs

  7. 'Being over here on the East Coast almost feels like being on the other side of the planet from you & Wash ............ I just fervently wish I could be there to help you!!

    Since Wash can't run; and he's having intermittent trouble walking now; plus he's (figuratively) "getting ready to stop crawling" ............ there's this huge ............ *H.*U.*G.*E.* ............ group of Loving People (as you know) "out there" who will additionally help you in *spirit*, Tashi, to pick Wash up; and ............ to ............ gently ............ carry ............ him ............ i.e., the rest of the way, you know.

    {{{hugs}}} -

  8. girl you amaze me with your strength at being able to handle this the way you do. :/

  9. Praying for peace for you both.