11-27-2022 Linda's home, with hospice intake tomorrow afternoon

(Tricia)

I wasn't sure whether to have Linda discharged yesterday or to wait until Monday to have the drain (which they tell me is nonfunctional) removed from her right side. At the advice of her primary care physician, I finally decided to discharge her yesterday and worry about the drain later. Unfortunately, we couldn't schedule an ambulance to bring her home until 8:30 last night, but we did get her home and settled by around 9:00. Her hospice intake will be late afternoon tomorrow.

Linda had been fairly alert and interactive in the hospital, and we had hoped for the same once she got home. But all day today, she has been quiet and moody (for good reason, of course). She has not wanted to be bothered by anyone--she just wants to sleep. She did wake up enough to eat lunch (she asked for two peanut butter and jelly sandwiches, of all things!), but she's asleep once again now. Perhaps she needs the rest from being in the hospital for so long, but it's very hard to tell.

The caregiver asked me this morning if my intention was the same as it was the first time Linda was on hospice--to keep working to get her better.  I had to tell her that this time seemed much different. Linda is weaker (if that's even possible) and seems even less interested in taking part in any curative activities. At a certain point, I have to listen to that, brain injury or no. If Linda wakes up in the next day or two and seems open to moving around a bit more, we can certainly try. But that might not happen. 

Ed is at home visiting his family this weekend, but Marilyn came over for lunch this afternoon.  We ordered Thai food and talked nostalgically about the times we remembered with Linda and what we will miss most about her. I'll miss her quirky sense of humor and the handmade gifts she would often give us out of the blue (from crocheted scarfs and hats to crafty keychains). Not to mention her jokester ways at Christmas--she was the one who would wrap a small gift in a series of nested bigger boxes or place a gift in a box for a different product, just to throw us off! I also will miss having a sense of home in Mountain View--I regret so much that I did not go home to visit Linda more often.  Marilyn will miss watching old movies and listening to classic rock music with Linda, and talking about who the actors and singers were and where they were now. 

We are in a different phase and mindset now. It's so hard, but we're having to move past the idea of hope to acceptance. There's not much more we can do except to take each day as it comes.

A view of the sky from Linda's room in the ICU
November 14, 2022

And, of course, keep enjoying what we when we can as much as we can, like a view of a beautiful cloud-filled sky near sunset--one of my favorite things! It helps shift my perspective, even if for just a moment.