5-22-22 Everything is relatively calm, at least for the moment

(Tricia)

I know I haven't posted in a while--we have just been trying to catch our breath!  Linda has been back at our house from her last stay at the hospital for about 10 days now, and in that time, we have settled into a semi-routine. We still have caregivers here to provide support day and night, but if things remain calm, we will hopefully be able to dial that back soon.

During Linda's first round with hospice, I originally had worked with a local private-duty nursing agency. But while Linda was in the hospital, I decided to call an end-of-life doula for further advice in navigating this difficult situation. She was the one who recommended I talk to our current caregivers (the same who took care of her mother in hospice), and I ended up making the switch. We currently have three women who take different shifts helping us with Linda, and all are very friendly and good with her. 

Linda also has had regular visits by caregivers of the feline variety (see Hopper's handiwork below). She was never a cat person before, but these days, she actually enjoys their company!

That said, it has been more stressful that I would have anticipated to have the caregivers in the house. It's amazing how much I took the ability to be home alone during the day for granted. Even though I know the caregivers are here for Linda, they are also guests in many ways, so it's an odd juxtaposition between feeling like a client and feeling like a host. I have tried to leave the house for small breaks when I can, but I probably need to do that a bit more. It's also financially stressful, so I'll also breathe easier for that reason when we can ease back on the caregiving support. That said, we certainly wouldn't have been able to bring Linda home without them.

Linda has just completed a two-week course of vancomycin, which has resolved the C.diff for now. As we know, that insidious condition could return at any moment. We're hoping to keep it at bay with a good probiotic, but we have to prepare for its return.  The hospice nurses have suggested we switch her to a different antibiotic, Flagyl, next week, which apparently can be effective in preventing C.diff. I'll wait to speak with the nurse tomorrow.

With the C.diff beaten back, Linda has become more lucid, so we have had some good days here and there, where she is talkative and even at times shows some of her quirky sense of humor. We've been able to use the Hoyer lift to get her into the specialized Broda wheelchair and into the rest of the house. Yesterday, we watched "The Money Pit" in the front room, which she seemed to really enjoy--she doesn't laugh much anymore, so it's always good to hear her laugh!  She was able to sit in the chair for about two hours before she began to get tired and feel pain from her pressure sore. When that happens, we quickly get her back to bed. 

This morning the caregiver gave Linda a makeover with some foundation, lipstick, and earrings--Linda said she enjoyed being dolled up. Today, she and the caregiver also have watched a documentary on Lucille Ball, followed by a documentary of 60s bands; they're now enjoying the "The Court Jester" with Danny Kaye. This caregiver is quite young--in her 20s--but she is finding the best stuff for Linda to watch, getting her education in the classics in the process. We also have been pulling up old movies and television shows to watch with Linda (I had completely forgotten about "The Rockford Files" and "Murder, She Wrote").  We have finally moved Linda beyond the Hallmark Channel!

That said, she also has moments, especially in the early mornings, when her brain injury is in full force. In those times, she is particularly mistrustful of the caregivers--she claims they are trying to harm her, but she is not sure in what way. She goes into full panic mode, and it can be impossible to calm her down. This is happened at nearly every hospital and facility she has been in so far, so it's not new, but she had a couple of quiet months when these episodes seemed to have resolved. But they're back again. She had one of these episodes at 5:30 this morning, which had me running to her room to try to help the caregiver calm her down. But later on in the day, she had no recollection of being in such a panic. It's an emotional rollercoaster.

Linda is still eating well (which always seems to come as a surprise to the hospice nurses), although she sometimes requires convincing. Our main challenge is simply to convince her to try to move. More than anything, she wants to get UP, but she is just too weak. But when we try to convince her to move her arms and legs in bed, to try to build up a little strength, she usually refuses. The brain injury once again has convinced her that there is a magical way other than exercise to help her regain enough strength to sit up and get her feet back on the ground! We've been fighting that fight for the last ten months, so we know it's a fight we are almost always going to lose. 

For now, though, things are as calm as we can expect them to be. I'm very happy with Pathways, our new hospice agency, so I'm glad we made that switch. This is still incredibly hard, but we're trying to be grateful for the fact that Linda is now out of the hospital and out of nursing homes, and in a home environment. I so wish I could help her stand up on her own two feet again, but if that's not possible, we'll do our best to keep her as comfortable and make her feel as cared for as we possibly can.

Update: Bling has now started his Linda shift as well :-)