Done Since 2019-06-09

[mdlbear]

Mixed. Monday, Colleen was doing really well. We had an intake visit from the nurse from Whidbey Home Health. Tuesday was the appointment we'd arranged with Carla, from the WhidbeyHealth palliative care team. She agreed with us (me, C, and N) that it looked like the infection was back; we did a little singing (see notes for the set list) and then went to the ER. She's been in the hospital since Tuesday evening.

Because we caught it early, it looks as though she's not going to need (much?) rehab after getting out; she's been able to do a little walking. Not enough; hopefully that will change now that I've told everyone that she needs to be followed by someone with a wheelchair. She needs to know that if she gets tired, she can sit down. Otherwise she will get scared (with good reason!) and won't take the chance.

In reality, the infection is almost certainly permanent. It's hard for me to be as optimistic as Colleen is. She is, at any rate, determined to keep fighting -- she wants to see grandkids.

Wednesday I'm leaving for my 50th college reunion -- I'm worried about how Colleen will fare, especially at night.

I signed up with 7cups for an online therapist -- N's thinking is that I usually communicate better in text than in person (I can edit, for one thing). It's not clear how that's going to go. They seem to have some pretty decent self-care courses.

Notes & links:

0609Su
  * up 6ish; S=6.0;
  : C just called R; Rabbit has a job(!).  We'll see how that goes.
  / noonish: C bathroom trip.  She's still not able to go all the way without having to
    sit down.  That could be a problem if she doesn't get stronger.
  / 4:30ish: C bathroom trip. 2 stops each way, as before.
  * high res CC+S cover image to Carleton
  @ jesse_the_k | Optimizing Display for My Wonky Eyes & Brain
    Better than the Printed Page: Reading on an iPad - TidBITS
    The Dark Side of Dark Mode - TidBITS
    Vision Stress Test black on various tints
  * reading: finished Being Mortal (Atul Gawande)
  
0610Mo
  * up 6:30; S=6:12;
  / Whidbey Home Health nurse (Diane, RN) will be over 9:30ish -> intake
    -> Put meds she's taking now into a bag; use to update med list
  * (0610) follow-up call with Wheelchair & Scooter Repair. 1-888-584-3095
    Connected on second attempt - tech supposedly called 5/29?  There was an unanswered
    call from 408 on the 29th, and again next day, so that's possible.
  @ White Words – Popula (jesse_the_k) Every word in "Eskimos have 50 words for snow" is wrong.
  * update C's med list from bag of what she's taking now.
  * get checklist of infection signs to watch out for    -> fever, confusion
  / 4:15 at this point C has had a shower and made 7 (at least) trips between chair and
    bedroom (3.5 round trips), all without needing to sit down halfway.
  * reading: finished Dying Well (Ira Byock)
  * ordered a new laptop for E
  
0611Tu
  * up 5:23; S=5:30, W=202.2;
  / C woke up a few minutes after I did, and went into the living room, where she promptly
    fell back asleep.  She's still leaking around her catheter (a little? bag is filling).
  @ 50+ Resources For LGBTQIA Allies
    She? Ze? They? What’s In a Gender Pronoun - The New York Times 
    New E-Book: Defining LGBTQ+ - It's Pronounced Metrosexual vocabulary
  x (V) 1:45 C hearing test -> cancelled; C feeling nauseous
  * helping j with math and science exams
  * 3pm Carla - Palliative Care (here) (ARNP, so can sign POLST.  Again.)
    urine test? edema increasing.  diuretic?  leaking around catheter
    -> C determined to keep fighting
    -> Carla recommended going to the ER; first we had some music.
  & music:  The River, Riverheart (which is what C actually was requesting as "the wild
    river song"), Bells of Norwich, Where the Heart is, October Country, Lock-Keeper, The
    Bears, Lily et.al., Gentle Arms of Eden, The Mary Ellen Carter.  Carla was there for
    the first few.
  ~ (v) take out garbage
  / C needed help getting into the car, and a *lot* getting into the bed in the ER.
    Surprised everyone by getting out of the car by herself while the hospital staff were
    off calling for reinforcements.  That's our Cheshire Cat.  N drove; j came along too
  @ In Home Care Answers – for caregivers and
    those planning care for their loved ones (via Drew's List)
  / 20:56 she's being admitted (doesn't have a room yet)
  / the usual problems with IVs.
  / 21:50 room 2308

0612We
  * up 6:45; W=200.6, S=6:10;  Cat boxes
  = V needs the day off (see Tu)
  : Cygnus kept shutting down immediately after booting.  Controlled shutdown.  Eventually
    I figured out that it was a thermal problem.  Let it cool down; worked fine.
  . * Mrs. Dash, pyramid pillow, * purple charging cords, 3-slot charger, electronics case
    ~(probably in purple scooter bag)
  : call from wheelchair repair asking me to verify that an appointment had been set up
    was on voicemail, and gave a number different from the one calling.  Will try tomorrow
  & picking up a scrip and TP for N; cherries and apricots for C
  / C doing better.  Kidney function improving slowly, urine still cloudy but improving,
    wite blood cell count close to normal, A-fib being treated with cardia, getting PT -
    able to stand and take a couple of steps.
  & cancelled her appointment with Dr tomorrow.
  * finished Cult of the Dead Cow

0613Th
  * Up 5:50; S=6:05;
  * pack up CDs for Carleton.
  * return call from  Wheelchair & Scooter Repair left message. 8885843095
  x 1:45 C Dr. Rochier
  * Dr. Travino - she's getting something to acidify her urine (like cranberry * 10).
    Metabolic acidosis (breathing) and respiratoryacidosis.  So she's also getting
    sodium bicarbonate (NaHCO3)  I have trouble keeping track of carbonate vs bicarbonate
    / sounds like she'll be off IV antibiotics soon.
    % I'm still concerned, but less so.
  / (social worker) Leslie - some good suggestions.  There's a NAMI chapter in Skaggit,
    and both peer counseling and family caregiver supoport on the island
  / brief visit from Carla
  / C was asleep when dinner arrived.  I woke her up and basically goaded her into moving
    to the chair.  Good move, and she managed it despite tears and protests.  So progress
  * Seven Cups of Tea.  -> N can help with initial contact.  Caregiving and being
    constantly stressed.  (N says I seem more stressed now than I was at RE when I was
    burning out.  So...)
  * signed up with 7cups (with N's help -- she's a faster reader and knows what to look
    for in therapist profiles.)  So there's that.

0614Fr
  * up 5:50; W=201.8, S=7:11;
  * homework (questionaire) for 7cups: see PJ/2019/06/14--7cups.md
    Crappy UI -- wrote it offline and pasted it into the chat.
  x 9:30 - 10 -- Wheelchair tech.  -> called; apparently he was in an accident and is now
    in the hospital.  They're going to try to find someone else.
  @ Zile - GNU Project - Free Software Foundation (Zile Implements Lua Editors)
    zemacs - re-implementation of (C)zile.  Not packaged for Ubuntu yet (as of Bionic)
    GNU Zile (Zile is Lossy Emacs) - Summary [Savannah]
  / transferred from bed to recliner; only a couple of steps.  I suggested bringing in a
    wheelchair as a chase vehicle, but the PT didn't listen to me.
  % N: "you say 'yes' better than anyone else I know"
    related to lack of boundaries?  Lack of limits?  Or just not thinking things through?
    I still don't fully understand boundaries in the psychological sense.
  / surgeon came in; recommended against doing an endoscopy and just treating for an
    ulcer; if things don't improve can take a look later.
  / problems with the IV.  It's been leaking.  There just aren't that many spots left.
    took it out; she currently doesn't have one, after three people have tried.
    Presumably they'll bring in someone else.

0615Sa
  * Up 5ish; S=5:52;
  * looked again for the pyramid pillow.  No luck.
  / they apparently tried to get a central line into C last night; she's now getting the
    antibiotic as an injection.  No wheelchair in the room yet (growf)
  * self-help courses on 7cups.
    " identify an activity you sometimes enjoy but do not do when you are depressed
      because you predict it will not turn out well. " -> HS reunion debacle.
    Their approach seems different from the CBT I'm familiar with; DBT?  The "managing
    emotions" course _is_ DBT.  Lots of acronyms.
    -> I haven't been doing the homework.  Should.  It will take longer, but that's ok
    e.g. thought records.  Do them for a week.
  % how the !@#$ did it get to be Saturday?
  @ Home - Hopeful Minds hope is teachable?!
    Hope Training | 7 Cups Help Guides
  ! sad.  close to tears.  Possibly because yesterday was (mother-in-law)Shirley's
    birthday (C mentioned, explaining her tears yesterday).  But maybe not.
  / no PT so far.  Spoke with (RN)Brittany about getting her up for dinner and walking
    after that.
  * qpdfview does an excellent job on lgf/Lyrics/zongbook, and it looks like the settings
    may be persistent.
  * SL: kosher salt, distilled water & catfood, chips, cranberry juice, felt feet
    -> put a couple of felt feet on Cygnus (at the back) -- we'll see if that helps.
  % beginning to understand why I procrastinated myself out of going to my HS reunion

Comments

[rainydaysandmondays]

Hold on. Be brave. :)