UPDATE

 No, this isn't a "bulletin bulletin bulletin".  What is these days?

by Claudia Soraya on Unsplash

 Nope.  

These are some notes written just after a wake and bake about what's been happening, home wise, ya dig?

So.  We are "on hospice."  I have trouble saying, "he is on hospice" as I feel that I am the one who needs them, not him.  I need to have people on my side when the really hard part starts (the part requiring nursing and lifting and the bedside commode and the hospital bed, etc.).  Fuck.

Fuckity fuckity fuck!!!!

I'm not built to be able to show a "brave face" and somehow "hospice" hit me, or I let it hit me, in ways that knowing about his approaching death has hit me a few times before, and I wind up pushing it back but only when I've flung drops of my grief like pitch onto friends and passing strangers.

I have so many projects to finish and I feel distracted and like I can't finish any of them.

I've been here before.  I can dig myself out.

Stoner stream of consciousness.

I walked around our funky classic 90s building in the dark early this morning on first arrival.  I saw a dude working downstairs and didn't want to freak him out by walking past him outside in the light, so I just looked at him and then out at the river and felt the cool breeze against my skin.  Cold breeze.  I think it was 31 degrees F.  As I stood there, a few lines of a someday poem came into my head.

I peak around the corner,
waiting for death as I
once waited for a lover
(plural that over time
times rage and hunger)
it's ETA now evidenced
to governmental gate -
keepers.....

And that's as far as I got!

But to continue with the update.....

He weighs 131 pounds on what was once a 6'2" frame with really big bones.

He doesn't eat very much.  I make sure he has protein snacks at various times to try and keep him more stable on his feet.  Heart and Home got us a walker but he hasn't chosen to use it yet.  I've gotten rid of all the rugs in the house except the old Afghani carpet in my old study (which I don't use anymore because he likes to be around me, I think?  He appreciates my presence.

He is generally content when he is awake, though reading very little, at least when I am in his vicinity.  Does he read when I'm not around?  I don't know.  I sometimes see him sitting in a chair looking at a book when I'm doing yard work outside the front window.

When nurse Kim came on Monday (Kimday, EFMday), she took his blood pressure and (drum roll please) it was pretty much the same as it was when he was taking the lisinopril!  (We -- Dr. Thakur, Nurse Kim, and moi -- have taken him off all life-sustaining medication.)  I keep thinking of General Westmoreland purportedly saying, "The beginning of the end is beginning to come into sight."

 

Wackadoodle

 Him at breakfast, about seeing my computer on top of a box shaped like a book:  "You put that little typewriter on top of that big book, but you didn't put it inside the  book."

Me:  "No, I didn't."

Him:  "Oh my goodness, what would Eleanor Roosevelt say."

Eleanor Roosevelt, First Lady of the United States, with John Curtin, Prime Minister of Australia, at a state luncheon in her honour at Parliament House, Canberra.

 

 

 

 

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Addition 12/16/2020

Him, sitting in a wingback looking out the front window: "I'm looking out the window and I can see the . . . tree in front of our neighbor's house."

Me, in the twin wingback: "That must be pretty."

Him:  "Oh, it is, but if they knew, . . . well they'd try and put a stop to it!  I'm going to take a nap."

 

 

 

 

New Hospice

It's another wake 'n' bake morning.

photo by Agnieszka Kowalczyk

Yup...back in that stoner state of being.  Sigh.  I need to quit so I can actually get high again rather than just maintain.  Thank goodness I no longer feel shame about this ongoing ferris wheel (Riesenrad?)  I get clean when I can, when I don't have to fence with the Grief every day.

Be that as it may, we had a visit from a different hospice yesterday, Heart and Home.  This was recommended by Will's doctor, Dr. Sonia Thakur.  We saw her on Thursday afternoon last week as a follow up to the visit from the paramedics two nights before Thanksgiving.

This nurse turned out to be one of my former students!  She took my Philosophy of Love and Sex class long ago.  She is the intake nurse for H&H.  She has a lovely lilt in her voice that spurred me to ask her about where she was born...Trinidad!  So cool.  Anyway, she did an assessment and said that we would be able to get hospice services so I should be getting a call from a regular visiting nurse today.  IF we are accepted in.  The nurse was guaranteeing but I will wait and see.

Although he got antsy toward the end of the visit, he was calm and patient throughout most of it.  At one point she asked him something like, "Are you upset that you can't do what you used to do?" and  he said something like, "Why be upset about what can't be helped?"  And that's what keeps him content, I think, that acceptance.  

We are so blessed that he isn't terrified and angry, that he doesn't understand how much he's lost.  Le Bon Dieu bless anosognosia.