The Empty Guest Room

This is Stan Vernon and Tom Fischer writing from Portland, OR.

Valjean has been much on our minds this week: she was supposed to be here now, a five-day visit we were all looking forward to. Tom and I haven’t lived in Chicago for 20 years, but we kept in touch with VJ and would see her on her occasional trips to Boston, where we then lived, and our occasional trips to Chicago. Her first trip to Portland was intended to be not just our first reunion with her in several years but a real celebration: she booked the trip in the spring when the prognosis looked promising. Her ashes were buried the day before she was to have arrived.

We were going to make her a present of a children’s book, the proceeds of which go to help the children of AIDS victims in Zimbabwe. Now we will keep the book as a reminder of our dear friend who touched so many lives here and abroad. We raised a glass to Valjean on the day of her death and have raised several more since. In the Anglicized version of the old Scottish toast:

“Here’s to you. Who’s like you? Nobody.”

Resting Places

On Friday we buried the ashes of Valjean and her mother, Wanda, in a single grave at St. Adalbert's cemetery on Milwaukee Avenue. Family and close friends were there to say goodbye, to mourn our loss, and to recall the many facets of Valjean's life and the impact she had on us and others. How absurd that she should now be in the ground. That she should not be. (She, of course, would say that I am the one being absurd: "We all have to get off the conveyor belt.")

It's a lovely spot, should you care to visit, away from the road, open to the sky but surrounded by trees. Surrounded, too, by many graves, old and new, with markers and, farther back, monuments, most of them bearing Polish names. Several of Wanda's relatives (Gawel) are there, in another section of the cemetery. Mary has ordered a simple marker for the two of them.

On another note entirely: Many people have asked about Sasha, Valjean's cat. She is now the proud owner of a new keeper, Sharon Kelly, in a veritable feline palace above the Kelly sisters' yarn shop, Arcadia. (Location, location, location.) Sharon -- a gifted caretaker -- reports that Sasha has taken contented ownership of the place, where she has a private bedroom and bathroom, an 80-foot run from one end of the apartment to the other, and many nooks and crannies for naps and cat-like solitude. A steady supply of high-quality and novelty yarn awaits her for many years to come.

To Be Read with a Brogue

Mary had a call today from Valjean's "Irish boyfriend" (pictured). She offers his words as a gift to all of us:


It was a gift to have known her.

I’ve rung everybody she met here, or gone and talked to them. People can’t believe it. She made so many friends here. She would go into people’s houses and talk to them – one man said, she made you so comfortable, talking to her. Young people, old people, children, it didn’t matter, she just was so natural, she would come into your house and sit down and talk to you.

She loved to have fun. Sometimes it amazed me, how she kept up the pace -- she would just keep going, eating, visiting people – only once or twice did she go back to the guest house for a bit of a rest.

She said she would come back for my 95th birthday. I said Valjean, that’s a long way off. I said, Valjean, if I were sick, I wouldn’t want you to see me like that. And she looked in my eyes and said, John, if I were sick I wouldn’t want you to see me either. Little did I imagine that Valjean would be in heaven before me.

We said goodbye, I said no tears now, just hugs and kisses. She said she would come back this year, I know you were coming too. You were a good friend to her, you and your mum, she loved you. She made so many friends – and that family in Africa too, the little girl, Valjean… We’re all praying for her – not that she needs the prayers, she’s in heaven sure, someone like her.

I had to call because, if you’ve been given a gift, you have to say thank you. And she was a gift.

Services for Valjean

From Champaign, Elihu Smith sends the following message to Valjean's friends:
We are planning to have a service celebrating Valjean's life and death at the Prairie Zen Center; tentatively this will be at the end of the July retreat, Sunday, July 27, at 11:00 AM. Valjean asked me to have this service when I visited with her in Chicago last week.

Please be comforted and healed in your grieving.

From Mary O'Connell:
We are currently working on arrangements for Chicago services for Valjean. The basic plan, following her wishes, is to have her cremated and then have a memorial Mass and reception/party later. Details will be posted here; and please be in touch if you are interested in helping arrange a party to celebrate her life.

Back Porch Anyone?

(from Mark McKelvey)
If you read nothing else of this – go to paragraph four below re: a get together today, Wednesday, July 9th.

Hi everyone - Kate and Francine, I just got your phone messages and send our love to everyone with a broken heart. When I left last PM I didn't know what to hope but did focus on a good passage and I'm sure Val got that. There was certainly a wonderful crowd of friends gathered to say good-bye! Thank you Kate, again, for making sure we were all properly lit. Valjean would have particularly appreciated that thoughtful touch as those bright lights can be so unforgiving.
I'm so glad Judith was there at the end. Could one of you forward this to her as I don’t believe she is on this email?

I know that acceptance comes after the anger and we'll all get to that but for now Edna St. Vincent Millay sums it up pretty well -
"Gently they go, the beautiful,
the tender, the kind;
Quietly they go, the intelligent,
the witty, the brave.
I know. But I do not approve
and I am not resigned."

I also know that everyone's exhausted and needing their quiet - and that we'll all gather later to celebrate our dear friend.

But - like Val I’m Irish and I feel a strong need to share time today in celebrating Val and having a good cry. If anyone's interested in joining in (please come!) I’ll be sitting on her back porch/stairs as of about 5PM today. I just talked to Kate and she’ll be there. Val’s back porch is the closest I can think to get to her – wanted to go to the hospice this AM but you’re all gone and the bed’s empty and I can’t bear that thought. I know Val will be with us looking out over the back yard so I’ll be there around 5/5:30PM and will bring some drinks and a cooler. We can get a pizza, if we want, from Leona’s and I may even bring some Irish tunes. Bring a Kleenex and your favorite stories. God knows Valjean helped create enough of them! Francine – Giudi – Kate and Mary – could someone please bring the swimming-with-the-dolphins photo? That’s a must.

Valjean and I sat on her porch when we lost our dear friend David 14 years ago next month. We sat in the sun and had a good cry. We'd celebrated David's birthday in early August and then he and Mike went to Traverse City to see David's family and David took ill and died there. Val, Betsy and I'd talked about going up to see him but it was too late. After we got the call from Mike I went to Val's and we sat on her back porch and had a wonderful pity party. She and I'd sort of set up a network of care for David and Mike, though nowhere near as sophisticated as the one set up this year for Val! Betsy and I were going to California the next day and thought about canceling and going with Val to the Traverse City funeral but she said David would say "go - go - go" re: our long-planned trip, and we did. Val promised to remember and share every detail of the Trav City trip and didn’t fail us. When we called from the west coast after she came back one of the first things she said was that "the comfort food was really good"!! I thought of that last PM when Francine or someone brought in the pecan sandies. The comfort food was really good!

Hope to see you later today.

Valerie Jean McLenighan 12/28/47 to 7/9/08

Valjean died this morning around 2:30. Judith Conaway was with her, so she did not go alone.

Valjean's body will be cremated. Her life will be celebrated on a date to be determined. Keep watching this space.

(Kate is kindly posting this for me because my internet connection is down- Giudi)

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.