Letting Go

Tuesday morning I received a call from hospice that there had been a significant change in Valjean's condition. When I arrived, around 10 am, she was in the state in which she has remained for the past 14 hours or more: unresponsive, taking difficult breaths at long intervals -- about 10 seconds apart by the time I left, around midnight. Many of her close friends gathered around and spoke lovingly to her; some read or sang or prayed. We recalled for her the good times we had enjoyed together -- and they were legion! Could she really have taken so many trips, with so many of us? When did she work?

The nurses say she could hear us, and I hope they're right. We assured her it was OK to go, that everything was taken care of and that we would be alright. But her body continues, working every muscle in her chest, back, and shoulders to take those labored breaths. I hope this is a short night.

Getting Ahead of Ourselves

We were so encouraged by Valjean's oxygen accomplishments on Sunday that it was terribly disappointing to see her on Monday: very weak and pale, sleeping fitfully much of the day, and breathing with enormous difficulty, even with the mask. Still, glimpses of the girl we love shone through as she opened her eyes and smiled at visitors, practically purred at Laura's massage, cracked a joke or two, and at one point burst into not-quite-identifiable song.

It's not clear whether this apparent setback is due to the change in medications, too much time on low oxygen (overreaching with the cannula), or simply the progression of the disease. Probably a combination of them all; we are complex creatures, and never more so than when we're ill. We hope for better news tomorrow.

Anticipation

"Looking forward" isn't something you'd normally associate with hospice, but as long as you're realistic about the boundaries, it's sometimes possible. Valjean is beginning to look forward to going home -- still in hospice care, of course -- hopefully this week.

On Sunday she took an important step in that direction: she received her oxygen through a nasal cannula (a plastic tube with forked outlet) instead of a mask. And last night she slept with the cannula instead of the bi-pap. She may go back to the mask today, at least for a while, but being able to tolerate the cannula could make things easier for her at home, possibly even allowing us to wheel her onto her back porch to enjoy that beautiful garden. Mary will set the search for 24-hour nursing care in motion today.

The New Chemical Regime

Valjean's meds have been changed -- from dilaudid, with its peaks and valleys, to a longer-lasting morphine -- to keep her on a more even keel. That means she tires more quickly, sleeps more, and says she feels somewhat hazy when she's awake.

Her own condition, plus the cramped hospice environment, lead me to suggest a (voluntary) change in visitor behavior: Please keep your visit short, and be alert to her energy level; it's more difficult now for her to ask people to leave, so she's counting on you. Keep the number of visitors in her room to no more than two or three; if there are already people in her room when you arrive, there's a very nice family room and a kitchen at the end of the hall where you can hang out.

We're in the process now of looking for 24-hour home care so VJ can have more pleasant and familiar surroundings. The doctor has suggested we get an LPN because of the complexity of her needs, though he says the right CNA might also do. If you've had experience, good or bad, with any local agencies or caregivers, please let us know with a comment on the blog.

Thanks for keeping up with Valjean's progress.

Boogie-town

Years ago, Valjean started thinking about what her old age might be like. No placid retirement village or assisted living facility for her. She would gather a group of compatible friends, and together they would buy a large, cheap building in an underdeveloped neighborhood -- I think she imagined Englewood at the time -- renovate it, and create Boogie-town, a community where she could keep on dancing, talking, and gettin' down all night.

Seasons Hospice is no Boogie-town. It's a quiet environment, with clean floors, freshly painted walls, tolerable food, and very nice staff; it looks like she's being well cared for. But the rooms are small, with few amenities, and she has a roommate who seems barely there (and who I hope is not bothered by VJ's visitors). It's not a place you'd really choose to spend your final weeks, if you had a choice.

Valjean may have a choice. The medical director, Dr. Amin, saw her this morning, and Mary talked with him afterwards. He told her they would try to maintain Valjean at an oxygen level and medications that would make possible a transition to home, maybe next week. He said that because of the complexity of managing her symptoms, home hospice would send a nurse daily rather then 3 times a week, and she would also need 24-hour care, possibly from a nurse (LPN or RN) rather than a home aide. He repeated what Ken had told us a few days ago: if Valjean does go home, there is always the option of returning to inpatient care if needed.

Dr. Amin said one other thing that I debated whether or not to put on the blog, but I think it's important. He said that her big issue now is anxiety. Hospice is doing what they can to manage this with medications, especially to make sure she doesn't experience "air hunger." What her friends can do is be as supportive as possible. And part of that is starting to let her go.

Turning on a Dime

The USS Northwestern has turned on a dime. Valjean is being transferred to Seasons Hospice (at Lincoln Park Hospital) today. Time is uncertain. Check back for updates.

Step by Step

On Tuesday Valjean took the first steps toward hospice care, meeting with Ken, a nurse from Seasons Hospice. He struck us as an empathetic man, experienced and knowledgeable in his field. He made it clear that home and inpatient hospice are both feasible for VJ, that they are not mutually exclusive, and that neither is an irrevocable choice -- she may move from one to another, as her needs change. No one is pushing her precipitously toward a decision, and we may look into other hospices as well, but I left the discussion feeling significantly more positive about Valjean's options.

Wednesday brought many visitors...after I had left, so I rely here on Kate's report. Among them was Elihu, Valjean's Zen teacher from Champagne, who left her in what Kate describes as "a very placid yet positive, almost joyful mood." Her friends Steve and Lilly also arrived from Canada -- but before they were able to see VJ, Lilly was admitted to the USS Northwestern with a badly infected finger. ("Couldn't they wheel her in here and we can have a pajama party?" asked Valjean.)

I had left Valjean this morning when the physical therapist came in -- I assumed to move her legs around a bit. Would that I had stayed! The grapevine now informs me that in fact the PT got her to stand up and take a couple of steps. Small and stumbling though they were, this may bring her one step closer to home.