doing well at the hospice house

My dears,

Val is doing well at the in-patient hospice house. They have been able to observe her closely and streamline her medications with the result that she is breathing a little more easily (still with the oxygen cranked, but without so many scary breathing crises) and overall feeling less extremely awful. The new meds regime is also making her more consistently groggy, but she is (and has always been) very much herself, if a somewhat sleepier and wackier version. You will not be surprised to find that all the staff and volunteers there already love her.

We love them too: everyone is incredibly kind and competent, and our whole team is heaving a collective sigh of relief that Val is feeling safer and a little better. Her color and energy and breathing all look better than they did in the last week or so. We (the team) are also gratefully relieved to have around-the-clock professionals helping us take good care of Val. The first time someone gave her some meds I automatically checked the clock and reached for our don’t-leave-the-room-without-it Notebook, and then realized with a small pop of shock that someone else was carrying that responsibility. Knowledgeable, gentle people help us shift Val’s position in the bed without hurting or worrying her. They bring her popsicles. They bring me popsicles. It feels like going to a spa. (And they moved us with total cheerfulness into a bigger room to accommodate the unshakable entourage.)

Meanwhile, they are working on sorting out the best meds regime for Val. They canceled a bunch of things and upped a lot of doses and today are trying methadone instead of long-release morphine, to see if it works as well for her breathing but leaves her clearer-headed. (Verdict today: not so far.)

Okay. So. We are always learning new ways about how the system works. Yesterday we learned that since Val was already becoming so successfully “stabilized,” she can’t keep taking up a room at the in-patient hospice house. Their goal is to make a patient comfortable and stabilized, and if they hit upon a medical and comfort regime (including tips for the caregivers) that can do it, they send you back home to maintain your comfort there. They are talking about sending us home Monday.

On the one hand, this is thrilling. We would love to be back home, with the dog and the familiar sunlight. It was wrenching to leave our home life on Wednesday. On the other hand, this is daunting. We are all feeling how much anxiety was suddenly lifted from us in this refuge of kind and professional care, and we feel too raw to give that up. We need more time to catch our breath. Right now we feel nervous — and we (the home team) are strategizing — about how to maintain this sense of greater ease, for Val and for all of us, once we get back home. The new streamlined medical regime will help. We are learning a lot from the staff and we will be hiring some help at home. And we are darn well going to make the most of this weekend at the spa, where when we get scared we can push a button and people come to help.