Friday, April 13, 2012

But which one sings?

It's been a busy few days for sure! Monday was one of the best days I've/We've had in weeks. Wash was VERY present. He was himself, he was nice and sweet and even though physically he was not up for much, I got a good cuddle in with him, some nice hand holding and really, just some good moments with my husband.
Then, most of him left again. He tried very hard this week to compensate, as his parents were in town for a couple days, but he was looking for brain and energy that did not exist. He needed some long naps, a lot more Xanax this week, and more patience than I had.
Caring for my 27 year old physically, but mentally .... not, husband is a lot like a grown human's body, the endurance of a newborn, emotions of a 4-6 year old, and the memory of a 20 some odd year old. It's a lot.
He gets mad at me when I have to explain something a few times, or phrase it differently so he understands. He is cogent enough to know he doesn't understand, but not enough to really grasp what he knows he has issues with.
I think it was hard for his parents to come and really SEE him this time. I'm glad they did, he is too, and happy he was able to be honest for the most part with them. I'm personally sad, I am not sure if he will have the relationship with his brother he wants, but on that; Wash's bro wants a (probably, I'm not Wash, so I can't say for certain) well deserved apology, but Wash is NEVER going to be able to do that. He doesn't remember they fought, let alone what over! Any apology is truly meaningless. But, I don't know if Wash realizes either that his brother has to work through things as well and "just because" he *is* dying, it does not mean that everyone he wants is going to be placing Wash as their top priority. As sad on either part as it might be.

But, Wash was able to say some things, his parents were as well, and my personal hope is that all parties have begun to move forward again towards acceptance.
All the rest is just drama that pisses me off, and I've had far too much of that this week.

Thank you to the several awesome folks who have sent us Girl Scout Cookies. Wash's steroids have been up for a few weeks now and he is MOST appreciative. I have a nice Thin Mint stockpile which should last me through the summer and winter. Since we're in AZ a wonderful treat I've loved for decades is freezing Thin Mints and having them out on the porch on hot summer nights when the sun goes down.
I've been hard working in my garden to make sure that option will be a nice one for Wash this year. My fruits and veg are doing great, with the exception of the melon which is not taking. Boo. However, lots of bean and peas, lots of carrots, tomatoes, my strawberries just starting to come in, so we have a few ripe once a week or so. I've got all my solar lights up, and at night the flowers look great and it usually smells like basil and wet rosemary now. My gardenia has also finally gotten over transplant shock from Dec and the first bloom opened this morning! I love the fresh smell, bringing the blooms inside.

Wash has lately begun to spend the mornings outside with me and while I water, weed, and garden he usually takes Leto out to play with grass and he has begun to "read" the daily newspaper. He asked me last week to start getting the paper; it's too hard for him to try and keep up online with the news now, too many distractions. So he kinda skims the paper daily, and if he seems something he wants to read or know more details about he asks me. I have noticed we do have some more things to talk about, but there is so much bad shit going on, Wash tends to get angry like me at certain news.
I try to check the news the night before so I know if I have to censor it. He's asked me to remove traces of a few things; some certain architecture things, anything to do with Taliesin/West, and Earthquake reports by his hometown in CA. Not a large list, but we've learned from hard lessons those things will trigger the shit out of him, and he gets very depressed or worse. It's a little more work for me, but it makes him happier.
Mornings have turned for us as well, he needs to go VERY slow, and usually needs some other help to tide him over for the hour or so he is awake before his pills kick in. I have to have extra patience during this time. He's not fully awake, aware, conscious. But, he tries to be. There's a lot more work for me every morning. I want to try though. I have to try.

His Hospice check-outs were pretty good this week. He is having some medication side effects now, he does have the standard "Chipmunk" steroid face. A few people had mentioned to me he was looking swollen, but I thought it was just his winter beard left over (see pic from Sunday). However, he shaved down Mon and Wed and as the photo above shows, it's not beard, he just has more swelling. He is slow GI wise, but still normal, though he is physically changing; his legs are getting skinnier and his muscle is wasting a bit. His belly and chest are getting more barrel shaped though; meds and just the inevitable path of cancer. He's still not eating like he was last year, but he is eating a little bit more on a daily basis. It's hard for him. He forgets he is hungry easily, and he won't eat unless he is being helped and reminded. He can feed himself, but he won't remember to eat on his own. That's hard to watch.
I will put this out; if anyone wants to contact me to help me get him a properly fitting UtiliKilt I would be beyond grateful. He loved his UtiliKilt from the day he got it, the day he was married in it, even some of his early chemo sessions he went in it. But, starting around last summer, he lost too much weight and could not wear it, then gained it back/ had it go to his belly. His old one does not fit anymore. It's what he wants to wear when he has a Living Wake. Should I try and see if the company can alter it for him? Get a new one at this point? Any advice or help I would love.

Also, in the photos above you may notice a new kitty; the kind, awesome, cool, inspiring, (positive adjective) folks at sent Wash a singing "Soft Kitty". We (ok, me.) named her Zazzles. We are in agreement she's a girl. Wash calls her his "Soft Kitty" though. Leto is just in LOVE. He keeps snuggling up to her where ever we place her on the bed. She's about Aelphie-sized, but unlike big sis Aelphie, Zazzles just sings. Does not hiss or try to fight Leto. He even fell asleep on her last night.
We're both pretty darn happy, and I am very thankful for the kindness; I smile when I see him cuddling his new plush and happy. So again, thank you.

I know there's more to catch up and talk about, but Wash needs me to cut a bagel for him.
Thank you, Dear Readers. Always.


  1. Wanted you to know that what you are posting about the changes in Wash's memory etc are helping me. My dad doesn't have the same thing, but he has areas of his brain that have just started shutting down, and the results are similar. It helps me to understand what is going on with him and to be able to help him a bit more.
    I can also sympathise a bit with you on just how very hard this is. It isn't the same, but like you, I have to cherish the good moments and deal with the bad ones.
    So thanks for sharing what things are like for you two. I hope for more good moments for you two to share.

  2. I've hollered at the Utilikilt folks. I'll let you know what they advise.

  3. Leto, with "Soft Kitty," is just about The *C.u.t.e.s.t.* Little Thing Ever............ the folks at are simply GREAT to have (so-kindly) sent this gift to Wash, too!!

  4. I sew so while I'm in Maryland I may be able to help. What size was Wash when he got the Utilikilt and what size is he now? If it's more than two sizes difference than what he is now it is very difficult to make wearable. Also try going to your local fabric store or quilt store - many often host sewing clubs where if you explain your store someone maybe able to take it in. If I wasn't so far away I would offer to do it but the sewer really needs Wash to try it on in order to know where to take it in/let it out.