lapis sky

my uncle is still alive but we went back to our house because it'd been weeks and my daughter was starting to get thrown off and restless and we have plans with friends this weekend so we're here for a reset and then we'll see if we do a workweek away again so I can be there. felt really weird to leave after daily visits and care but everyone's kind of got into a groove and he's getting more scheduled nurse visits so things feel relatively stable. we're all kind of amazed that he is doing so well but the last few days he's said he feels like he's fading, not eating for so long is taking a toll and his sleep hasn't been super restful. his nurses recommend an anti anxiety medicine for that but it's a benzo and his liver isn't functioning very well anymore and a side effect with that apparently is bad dreams and the first night he had a nightmare he described as hallucinatory in how vivid it was.. he said people were building a house around him and then they were fixated on cleaning and tidying it for a party and he ended up removing all his blankets so they could clean it up and it really freaked my grandma out and then he slept in a weird position that ended up creating pain for him. he tried it again the next night despite that experience but he didn't feel like it did anything and the nightmare was so freaky that then when there was no noticeable benefit he's like well I'll just do without. and I think that makes a lot of sense, like going from not taking drugs to taking hard drugs during a weird time when your body is sending you all sorts of messages and he just wants to know what's real and what's not. he's open to stronger pain medicine if he feels the need but I think it's cool how he's approaching it. at first, hospice is so comfort focused you think ok let's go but that's such a change in behavior and his nature so of course. driving away I was like wow was that my last time seeing him? I said do what you need to do but I'll be back in a few days. feels weird being gone (an hour vs five minutes) when things could escalate, feels weird being there knowing we're out of our normal life for so long. feels weird not knowing what's goodbye and I feel sad but I also feel like the last few weeks we've had such good times talking and listening to music that if it happens I at least don't feel like there's anything I didn't get to say or do, it all feels like extra.

weyes blood a lot's gonna change sure was onto something

I'm feeling spent today at 9:30 this morning because we had a big deadline for work and it's done and my boss has been really great about me doing what I need to with my family but to get stuff done I've been staying up late and doing work when I can if I just skip out and visit during the day or to be there when the nurses are there and I really love being able to do what I'm doing for my uncle because he responds the best to me and lets me help him with stuff he doesn't want my grandma or his sister to do so I am glad to be someone he's receptive to. and I'm also willing to do things other people either can't or won't and a lot of that I credit with being a camp counselor in high school and developing a skill of being very difficult to gross out and getting used to messy jobs. my mom's been helping me a lot with childcare which is a huge help but she's pretty bad at keeping an eye on the time so I usually try to take breaks to keep my daughter's schedule on track for the most part, but with this deadline I've had to just focus and leave them more to their devices at least yesterday.. so today I say I think let's try to have an active morning and see if she'll nap a bit earlier and my mom comes up with this whole thing about going on a major outing when everyone woke up late and no one's ready and I was like well I think something easy here or local like the park would help because then we don't have to rush anywhere and then she did this whole passive aggressive response to me and I just was like.. come on man.. she consistently hasn't been able to meet this moment with anything but horror like always commenting on how skinny my uncle's gotten or how she can't stand the smell of his bile bag on a hot day let alone help to drain it and it's like. he is accepting this situation with such openness and dignity the least we can do is try to match that and participate. she keeps wanting to talk about him and not to him, and acts like things shouldn't be said in front of him and my experience has been the total opposite, like he is fully capable of having what might be perceived as difficult conversations and bringing all the knowledge and perspective he has into them. yesterday we listened to a lot of beach boys songs on the speaker and still have not solved the mystery but he had a restful smile and was very grateful. this is about too many things but it usually comes down to my feeling that my mom struggles to be present and open and it comes through in so many things and someday I think we are going to have to get better at meeting in the middle.

new thought this morning that my mom and I are like oil and vinegar and we still haven't learned how to emulsify

my uncle is still alive but there are signs things are declining more now. we had a good day yesterday where he wanted to talk and my brother asked him what books he'd recommend to him, which started probably a 2+ hour conversation. he named many classics and talked about the feeling of finishing a book and just thinking wow that changed me. he talked about bertrand russell's philosophical essays and how he's not sure he even agrees with them but his style is so lucid and intelligent that you feel smart by association just absorbing it. he talked about moby dick and war and peace and east of eden as books about everything. he told me about a short story by tolstoy called where love is, god is about a shopkeeper waiting for christ to appear to him at christmas time and about aldous huxley's the perennial philosophy which I remember buying at his recommendation in high school and really liking. I wish I could describe books I read with the kind of detail he does. I feel like I read them and am in them and then I don't really recall them as much, we were talking about studying philosophy and I feel like he remembers his degree from 45 years ago better than I remember mine from 10 years ago. his ability to pay attention and recall is amazing to me. his breathing is becoming more labored and he's feeling more discomfort than he was, and is also more open to taking medication the last few days. there's a beach boys song he can't place but he was singing me the percussion line and it's one that could be so many things but so far is none of what either of us thought of. I asked a friend if he had any ideas and he sent some but we're still looking. today I'm bringing a bluetooth speaker over and we're going to listen to two albums from the era he thinks it's from and see if we can figure it out. one last mystery to solve.