Saturday, May 5, 2012


So, one of the downsides of Wash's brain cancer is that every once in a while he hallucinates. Sometimes it is visual, sometimes auditory.
This means that often Wash will ask me to verify if he is hearing/seeing something correct. This also means he will wake me up randomly in the night to ask if I heard the "sound" he did. That's a bucket of fun.

But, sometimes he's not hallucinating.
So, for a day he heard buzzing in our kitchen. I said it was probably one of many things we have plugged in and the motor is making a sound. I was wrong! The next day we both saw 3-4 flying things in the light fixture in the kitchen. Since I will die if stung, I freaked the fuck out and ran outside. We called for backup and Andy* came by and he and Wash fought a brave battle that rages between 4 creatures 1" long with wings, and two fully grown human men with a can of RAID that shot a 20' spray.
The Men came out Victorious.

And I promptly called my doctor for an Epi-Pen refill and my landlord to get some Pest Control workers out here.

So, they came today, sadly with little warning. Which led to my last minute harried-ness this morning. We had help on Thursday and Wash actually told his aide NOT TO HELP HIM. So, the place was left a frakkin' mess. I am not upset at the aide, she was listening and caring for Wash, he just kept insisting her to leave things for "him" to clean "later". [I was having a long talk with the Social Worker out of the house at the time] So, Friday my house was a mess, and I was so busy and tired I couldn't do everything. And Wash was just happy because he was seeing a friend, and going to the Avengers movie, and getting to eat dinner out on top! So much fun stuff! For Wash, he cannot do more than one task at a time, and he forgets things. So, all his stuff he was going to pick up and clean, he did not.
Since I knew the kitchen had to be cleaned/cleared out for the pest guys to check, I ended up waking after less than 3 hours of sleep yet again this week (no naps for me, either!) to clean all the things Wash said he would have taken care of.

I know he needs to say these things to make himself feel useful, to feel needed, but all it does is add stress to me. Every time he puts something off- which is 99.999999% of the time, he never comes back to it. That's how his brain works. But, if I just do it for him, or if I do it after he says "I'll do it later" he turns his anger to me- "What, you don't trust me? You know it's your fault, really, you tell me I'm not allowed to do things when I want to!"
So, I just could not handle all the chores and work to do today, watching him and dealing with any help or issues or anger at me, dealing with the pest guys, and no sleep. It's all too too much.
I called my mum. Thankfully, she and my (step)dad agreed to watch him for a while today, let me work and rest a bit.
Wash was not really happy about this. He was confused, and angry and so mad that I "would not tell him where I was leaving him!". I had already told him calmly twice that he was going to stay with my mum today so I could work. He just literally could not remember even as I told him. So, he was pretty confused and angry when he left. He seems to think often that when he goes out for a day with someone else, I'm "leaving" him, "abandoning" him or the like. He just cannot grasp otherwise.
That's painful to see and deal with.

I did at least catch his mother up on things, so his parents really know. I just was not able to lie, to hold back, to be kind about it. He's not doing well. Things have changed, they are getting worse, and they very very likely will never get better again. So.
I cried a LOT this week.

Back to the pests, though! That was my histoire du jour.
Cleaned for 3 hours, and got Wash safely to my mums. He even got treats and snacks to go along with his sketchbook and ses 3 of "Fringe" to watch.
The pest guys came over, poked around a bit, checked outside, looked at my place and my 2 neighbours West of our unit, and came to a verdict of not Wasp, not African Honeybee (several colonies found locally in the last couple weeks) but Carpenter Bees.
So, our downstairs was treated, the outside, a crack in the wall between units filled, and the wooden fencing in my backyard treated too. Same for the neighbours.

Now it's noon, been awake for 5 ish hours, and have a few clear hours without Wash to try and rest this afternoon.

I think my biggest challenge will be to actually rest right now, today, and not use the next 4-6 hours to just clean without a Wash following behind me, or messing right up the things I just cleaned.

Thank you all, Dear Readers for your comments, support, and good wishes. I know, even though it's painful to face the truth, I'm coming into the final stretches with Wash.
I'm just going to do my best for him, and my best to be vocal about my own needs right now.


  1. I'm thinking of you. I've been following your story for a while. I've been hoping that you would get a little bit more time. I'm sorry that you may not. I'm sorry that you and Wash have had to go through all of this.

    My thoughts are with you and I hope that you get at least a couple more good days/moments.

    *internet hugs*

  2. Wow! I just never know what to say, but wow. And I'm super glad you didn't get stung!

    I've been sick (strep) so I thought I'd just rest some more, but now I'm thinking, if Tashi can clean house in that situation, me too! :D

    Hope you find a great moment in your day. :)

  3. Hi, I've been following your blog for a short time and I just want to say: You are amazing. Brain cancer is something that hits close to home with my family and I appreciate your honesty and kind, tenacious spirit. I'm so sorry for your situation and that you won't get more better quality time. I'm just so sorry. I will definitely be thinking of you. Enjoy your couple hours of rest time :)

  4. Thanks for all your posts. I have had two experiences with terminally ill people close to me, the one was someone who was in a lot of pain and discomfort, but with a clear mind, and who was euthanized after he had slipped into a coma (this was in another country, not the USA). The other was my stepfather who was dying of metastasized prostate cancer, but had suffered a series of strokes that left him with dementia on top of it all. It was agonizing for my mum and I who managed to provide the best possible context for him - at home care, very good pain management, but b/c his mind was gone he did not know he was being cared for. For instance, he thought we had left him outside in the yard to die all alone (while in reality we were with him in his room at home.) Through those experiences I learnt the difference between an awful painful death, and an awful, painful, horrid death. It is totally fucked up and totally unfair. All I hope for is that you have all the support you could possibly have. I am briefly back in Tempe but about to leave again. When I get back June 13th I can be available to help with cleaning or maybe some other stuff. Please do not hesitate to call on me.