ironymaiden: Older Asian woman with curlers in her hair and a cigarette in her mouth. (hair)
Haircut today. Still asymmetrical but now with more drama. I'm pleased.

Dad's facility is now closed to visitors. I'm glad PA is on the ball, but Mom is crushed.

I am struggling with this week's homework. At this point I've accepted that I will take tomorrow off and game instead of starting late (for the third week in a row). Saturday will do. I have a 105% average, time to take advantage of it.
ironymaiden: (gah Haley)
i am not currently over the Rockies, i am in a hotel room in Glen Burnie, MD for my sins.

as is apparently the rule now, severe weather on the east coast turned a three hour highway trip (from central PA to BWI) into seven, complete with highway closures and detours onto unplowed roads. my brother B is in the other bed, snoring. he is the hero of the day, driving in horrible conditions, helping me to decide when to give up on making the flight and call the airline, and getting us into a hotel. as it was, it was so fucking close...i would have arrived at the airport exactly as the plane was taking off.

i was supposed to have tomorrow at home to decompress. i was supposed to walk the dog and go out for breakfast and take a nap and cry as much as i needed to.

* * *

i did everything i was here to do: got Dad to his last specialist appointments, moved him out of skilled nursing near Pittsburgh and into assisted living near State College, did all the errands and shopping required, set up all the electronics, moved a refrigerator, made five hats, replaced the blinds in the office, knit a gift for a physical therapist, cleaned the sewing room, hung a quilt and art on the walls, sat in on meetings with the assisted living director and a call with the attorney, and made Mom a roll of bias binding. i also tore up the frostbitten marigolds.*

i drove a lot, and i sat through a lot of Hallmark Christmas movies. (remember when Stuff White People Like was a thing? those movies, wow. they deserve a post.)

i am not entirely ready to talk much about how Dad is doing, but i will note that he is not suffering from dementia and for that i am deeply grateful. Mom is doing pretty well, considering, and i enjoyed visiting with her and we managed to not yell at each other too much. (we have a lot in common, which makes conflict inevitable.)

i miss C so much, and i am carefully avoiding looking at work stuff.

and trying not to be angry that i can't go home on time. again.

*i like to look at plants, but i don't like gardening, especially going out in the cold rain to pull up dying plants with mushy leaves.

letters

Oct. 10th, 2018 05:13 pm
ironymaiden: (my pen!)
ten plus years ago, I wrote paper letters and cards on the regular. I got out of the habit for various reasons.

I've been writing Dad 4-5 cards a week, because he likes getting mail. I'm enjoying it - feeling a sense of connection (even though it's a monologue), using my fountain pen, practicing my handwriting, getting to shop for cards, stamps, and ink.

It does seem to use up my journaling energy, where whatever is on my mind goes off in a letter to Dad. Then they get read by anyone that's around him, so in some ways I'm also writing my mom and my cousin and my brothers. The information asymmetry makes phone calls with them odd.
ironymaiden: (bondage)
I have so much to write about, but I have a release. I'm alive, both Dads are alive (for now) and I got to go paddling on Saturday. More later.
ironymaiden: (my pen!)
i went through a period of frequent letter-writing, and then life stuff intervened and i got out of the habit.

since Dad has been in rehab since late February (and he loves getting mail) i've been trying to send him a card several times a week. i like to write them with my fountain pen, it makes a little ceremony of the practice. but at some point recently i gave it a whack and it's been not so fun to write with. (maybe i misaligned the lid? can't remember the exact circumstances.)

thanks to a post by [personal profile] cimorene, i spent some time cleaning and tuning up today. these instructions were quite effective and i'm delighted with a return to the ease and fluidity i remember. i've been using violet and moon dust inks, i wish i could figure out where i put the olive and brown. for now i'm loaded up with amber and that is pretty nice.
ironymaiden: (quilt)
due to circumstances beyond my control, i have made so many hats this year. when i talked with Mom on Mother's Day, i nattered on about what i've been making (as i often do, it's a great thing to have to talk about with someone who is also crafty). apparently she passed that info on to Dad; the phone rang while i was waiting for the shuttle to work the next day, with a request for a hat for Dad. it started out being a request for a surgeon's cap like i'd been doing recently (a resized version of this pattern) and rapidly turned into a consultation about designing something completely different. *sigh*

but i did kind of love how Mom was describing what they wanted: "one of those pillbox hats like Muslim men wear". fortunately, Dad's head measurements are just a 1/4" smaller than C's head so i at least was able to do fitting. i mostly improvised. i have my paper pattern for the top of the head and notes. it's quilting cotton on the outside and recycled flannel inside the brim for softness. it's since arrived and the fit is perfect. they're waiting for it to run through the laundry there to report back on how it holds up and if they want more on the same model.
ironymaiden: (CxG triangles)
Craxy Ex-Girlfriend Live wasn't perfect - we were one of the dates without the amazing Donna Lynne Champlin - but it was pretty freaking great. they were clearly having a blast and it was a grand mix of low-fi "we just threw this together" and polish. the Moore was sold out (the show had to be moved to a larger venue after the Neptune sold out in ~one hour). waiting in line for GA seats was literally painful due to a freak hailstorm, but we got my favorite spot in the orchestra - peak of the rake, center center. perfect sightlines, great sound mix. since it was during passover, there was even a point where a big box of matzoh got shared around the theater. at the time we saw them, they didn't know if the show would be renewed or not. the tour could have been the last time they all got to hang out...but the renewal notice came through the next day. they will have a fourth and final season, and i think that's pretty much perfect.

i know that i say this over and over again, but seriously: CxG is on Netflix. give it a try. it's the best musical comedy about life with mental illness that you've ever seen.

* * *

Dad is settled into a transitional rehab place, and is walking with a walker every day. i've talked with him on the phone a few times. the pauses are still long, but he sounds better every time we talk. Mom doesn't have anyone with her right now, which makes me sad*, but things are way less scary. my cousin who lives near the facility Dad is in has really stepped up and i don't know how to thank her enough.


* * *

i've been tearing through the Throne of Glass books now that my library holds list has kicked in. (i am probably digging it because the protagonist is basically a D&D character that i would play.) i haven't enjoyed a fat fantasy novel this much for a long time. it's definitely violent, but i can't call it grimdark.





* now the top of my lottery fantasy list is immediately flying to PA, which is not something i ever thought i would say.
ironymaiden: (chinstrap)
i talked with Dad on the phone today, after he'd had a full day of therapy and was waiting for his dinner. you have to give him time to formulate his sentences (which would be way easier if i could see him) but his speech is clear and he can carry on a conversation.

i mostly held it together while we talked. i told him that i was upset when i couldn't call him on his birthday (and that's where i got choked up while on the phone) and he said that niece A said he should have a birthday when he gets home. i agreed, and he proceeded to tell me all the things he would like to eat :)

he seems to be remembering things and attributing them correctly. he stood up with a walker today, and they have him pulling himself along with his feet when he's in the wheelchair. his feeding tube is out, and he's feeding himself with cutlery that's weighted to help counteract the tremors in his hands.

he talked about the doctor telling him how long his surgery was. i don't think he remembers very much. i don't know if he remembers me being there at all; that thought hurts me a great deal, but i know that i helped Mom get through some of the worst days and i just have to be satisfied with that.

after i got off the phone i just melted down in tears, like a dam had broken. it's been more than an hour and a half and i am still shaky. part of this is that i had a migraine yesterday, but i'm feeling weirdly grateful that i had a migraine yesterday (and so was tired enough this am to work from home in order to allow for periods of rest) so that i could cry at home today.

this is the second time that i've happened to be home when there was big emotional news about Dad. convenient, that.
ironymaiden: (rich zoe)
today my sister-in-law sent me a video of dad walking down the hall in his support harness. he's been steadily improving all week. Mom is going to try to get me a phone call with him tomorrow. he can talk on the phone.
ironymaiden: (left hand)
they took all of Dad's plates out, not just the one. probably squicky details ) this is not a total surprise, but it's another complication. his rehab therapists are fighting to hold his room until he gets cleared from the hospital again.

damn it, A says he was using his right hand to spoon himself pudding before the surgery. that's gone again. but at least today he was able to sit in a chair, which is ahead of the goals on his chart.
ironymaiden: (gah Haley)
Dad is having another surgery tomorrow morning. The skin on his head isn't holding closed over one of his mesh plates, so they have to remove/redo the plate.

I am so tired of being scared all the time.
ironymaiden: (mind)
i am home and back at my first real day of work. it's all very normal and very alien all at once.

Dad is progressing. his aphasia diagnosis is official, and as far as i'm concerned that's hopeful - he needs to work on getting his words out, but behind that barrier he is very much himself. to his limited ability, he's been friendly with the staff and making jokes. i know it will be a long road, but he is so game and so patient and so determined.

we still don't know why his symptoms wax and wane. sometimes he can't move his right extremities at all, sometimes they're just weaker than the left. when he's tired his speech is soft and slurred, and he might only be able to manage yeses and nos. there's no way to measure if it's seizure activity because his scalp is still too delicate for EEG. but the expression is consistent with left-side brain damage and that is where the tumors were. from discussion with mom, i think some of this was coming on before the surgery. being optimistic, i can see how having the tumors out and doing intensive rehab could get him back to pre-surgery baseline and maybe better.

the last thing i did before i left the hospital was to ask him to sing with me. (i suspected from previous reading that he would be able to sing more fluently than speak.) he led as we sang the song he used to sing to put me to sleep:
Sixteen Tons.*

we made his nurse cry.




*Dad sang weirdly inappropriate material to and with me when i was a child. i bought a handful of mp3s for songs we used to sing together and sent them to mom to try getting him to sing along, part Kenny Rogers and part Peter Paul & Mary. Kenny Rogers songs we used to sing together included a wife cheating on her disabled veteran husband, rape and revenge killing, a man riding in a train car with a dead body, and an ex-husband berating his unfaithful wife in public.
ironymaiden: (dandelion)
it was freaking 75F here today. I took mom on a the level route I found to Fifth/Forbes (the two one-way arterials that are the heart of the Oakland neighborhood's business district) and bought her Thai for lunch and then went to Dave & Andy's for ice cream. my favorite flavor happened to be in rotation today, so that was pretty great.

Dad was bright-eyed and chatty (for him) when we arrived at the hospital this morning, but his occupational therapy session of placing blocks and pegs with his bad hand tired him out completely. like, that session was great. and apparently he was great before we got there - his morning OT starts with "ADLs" (Activities of Daily Living) like washing up and getting dressed. but then he was groggy for his speech therapist and for his physical therapist. *sigh* his PT was very understanding and put him down for a nap before his next session. (I feel a little odd saying it that way, but it does take two people to get him into bed.)

last night he got a beard trim and a shave (needed; Dad has had a beard all of my life but he keeps after his cheeks and neck) and today he was wearing jeans and a polo shirt and his socks. Mom knits his socks. they were admired by all.

my sister arrives tomorrow. fingers crossed.
ironymaiden: (rachel maddow)
today was a good day. I went to occupational and physical therapy with Dad. I helped!

as I said to his OT, way better than sitting by his bed and knitting. My job was to get him to look up at me, and he did. He handed an object to me with his weak hand. He walked to me (with two people supporting him) three times. I held up fingers and he told me how many. He answered all sorts of questions correctly and quickly.

...it's kind of killing me that this is fun and exciting and I'm going to leave on Friday. then again, if he slides back again tomorrow it's going to feel even more rotten.

The rehab hospital is part of the same complex as where Dad got his surgeries, but used to be an independent organization: a teaching hospital for Jewish physicians and nurses. Today I found a lovely history exhibit lining a main hallway and hope to get time to read all of the displays.

So yeah, I think i'm going to work on Pacific time this week so that I can attend Dad's therapy sessions.

less good

Feb. 12th, 2018 04:49 pm
ironymaiden: (gah Haley)
the last couple days have been hard.

Dad is too weak to walk and while he has strong grip and can lift his arms he has real trouble filling a spoon or aiming it at his mouth.

he is bordering on combative when he can't get what he wants. cut for bodily function talk ) he starts thrashing around and refusing to listen and saying odd stuff.

"Trump! I need to Trump!"
"Master and Commander. I have a 26lb master and commander."

he is different than he was after the first surgery of this trip (or my memories of previous surgeries) and I am starting to get scared.

* * *

Dr. G has a lab coat with frog closures. I don't think I've seen that before.

* * *

Eventually he's going to move from the regular hospital to inpatient rehab, which is in the building next door. I'm glad of this - he will get wheeled across a skybridge instead of loaded in a transport, and his medical team won't change.

I spent part of today buying groceries and a lunch bag so that we can spend less on eating out. Mom is starting to fret about the cost of being in Pittsburgh that we're past the original hospital discharge date and there's not a clear exit. I have already told work that I won't be able to attempt to log in until late this week.
ironymaiden: (boid)
at the inn, running laundry. mom had a brainstorm about having me run errands during the day when we weren't both knackered. I have enjoyed the chance to have a long phone call with C and generally be introverted.

Dad came through the surgery fine. He now has skin from his left leg on the right side of his head. medical details )

***
I like to fall asleep to an audio book. Last night I was so tired I forgot to set the sleep timer. Woke at 1:30am to mom waving the phone at my face asking how to turn it off. fortunately it turns out that my response to a shadowy figure menacing me is to scream rather than to, say, hit them.

We've been laughing about that all day.
***

I found a gentle path from the hospital (through some connected buildings) to a block with Indian and Thai food. I'm hoping to get mom to go out for dinner (the burgh is very vertical; Seattlites can imagine we're on Pill Hill). If this laundry ever dries...
ironymaiden: (snow)
as noted previously, the hospital has charming robots trundling around. of course i haven't seen one since the other day, but their parking signs are definitely all over. here's an article about them.

Dad is doing fine now. other than being super-tired he's lucid and chatty and able to do things like feed himself.

cut for medical squick )

tomorrow will be a second surgery with the plastic surgery team to finish putting his head back together. i'm pleased since it means that they figured out what to do. unfortunately we never managed to talk to the doctor ourselves, just got stuff second hand from Dad or his nurse. so i guess now we'll get the real rundown when the surgery is done and the surgeon comes out to do the customary family debrief.

i seem to still remember how to drive in snow, which is fortunate since snow and also hella hills. (i have a soft spot for Pittsburgh and if i had to pick a place to live in PA, this would be it.)

***
in other news, NBC Olympic coverage still blows. really missing CBC.
ironymaiden: (waiting)
dad is still in surgery and stable. that's all we know.
ironymaiden: (PA)
we are in Pittsburgh and I survived driving my parents' car that takes control of the wheel when it thinks you're weaving too much.

I like our residence inn, in spite of it being not the one I thought it would be. it is near the hospital, but not walking distance. At least we have a view of the Cathedral of Learning.

we had very good Chinese delivered for dinner (pretty sure the eggrolls were house made but it's PA so there was still duck sauce) and it cost $20 including a tip that the delivery guy thought was generous. the more I think about it, the more I hope Pittsburgh doesn't get HQ2.

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