Helen & Warren's Archive

Afterwards – Berta, Izzy, saying goodbye

Friday, May 9th, 2008


Berta, Izzy, an unforgettable relationship

May 9, 2008 – Izzy said goodbye to Berta, Helen and Warren’s daughter, today, and
the farewell was as emotional as it appears in this photo. Every Hospice home is, to some degree, a place of chaos, as the normal settings and routines of life are replaced by hospital beds, wheelchairs, oxygen pumps, catheters, IV’s and medical equipment. Normal life is suspended, sometimes for months. Furniture is moved around, household chores are often put on hold.
Berta arrived a few days before Helen’s death and has been helping Warren bring the house back to normal. She did an incredible job, cleaning out the kitchen, getting rid of the medicines and lotions, vacuuming, dusting, getting the furniture back in place, beginning to remove her mother’s things. Like Warren and Helen, she never once complained, just set t work. Her grief was evident in her relationship with Izzy, and two grew closer by the day. I have no idea any more what Izzy does or doesn’t know anymore, but he seemed to be saying farewell, zeroing in on Berta and laying on the floor with her, still, the feelings between them passing back and forth. “Thanks, Izzy,” she kept saying, “I don’t know what I’m going to do without you. I’ll be back soon.”
The house is back to normal, but it is quite different. Tomorrow, Warren begins his new life, alone in the house he and Helen shared since 1966.
These two shared a significant experience with one another, and neither will forget the other, I’m sure of that.

____
I’ve been assigned by Washington County Hospice to be a bereavement volunteer for Warren, which means I will continue working with him, not to help through the dying process, but it’s aftermath. I am reading, studying, preparing for this new role. I am fortunate to have a close friend, Becky MacLachlan, who runs a Griefshare workshop in Washington County, and who lost her husband Bill to cancer about 10 years ago. I am also drawing on the resources of Hospice’s bereavement staff and various books and articles. Hospice provides bereavement support to the families for more than a year after the patient is gone.
I also continue my current work as a Hospice volunteer.
With Warren’s blessing, I’ve decided to start  a “Hospice Journal: Warren, the Grieving Process”, which I will begin this weekend. I hope to try and capture, through words and photos, the continuing work of Izzy and Lenore, the Hospice dogs, and also the aftermath of losing a loved one. Warren says he is eager to participate, if “it it helps anyone.” I think it might.

When you don’t want to go

Wednesday, May 7th, 2008


The Hound of Love reflects on the foibles of humanity

May 7, 2008 – It was sometimes difficult, occasionally painful, but I always wanted to go see most of the Hospice patients I’ve been assigned to. I generally like them, and the people around them. I have been confronted lately with a patient on the other end of the spectrum, one I do not want to go visit. There are no poems or sweet memories, no laughter or warm moments on these visits, no people much to like or talk to. Honestly, I don’t think I like him very much.
If Warren and  Helen’s life sometimes seemed like a sweet love story, the home Izzy and I went to late today was nothing like a fairy tale. It was our sixth visit, and I have struggled with every one of them.
The patient is a man in his 50′s almost totally disabled by chronic degenerative disease, who sits alone in a corner of house, empty, but for him and private nurses.
He cannot move, cannot speak. The family will not permit photos of him, which is fine, but a relative told me the reason was because they didn’t want anyone to see him, because he “used to look human.” This comment was made in front of the man, whose eyes told me – he can’t speak much – that he heard every word. Unlike many of the other patients, I am not drawn to him, or of what I could see and glean of his life.
He loves animals and Izzy and Lenore have both visited with him, to his evident pleasure. The nurses are efficient, and he is well cared for, but there is little regard for his dignity, and we often see things that are uncomfortable, for me, and, I am sure, for him. I guess I don’t much like his nurses either, also unusual for me. Mostly, we feel very welcome when we visit. In this house, I often don’t.
A number of other things have bothered me about this house. This patient is, in fact, disfigured, and difficult to be around for other reasons. I thought of the beautiful meticulously cared for people I often see, and then remembered that it isn’t always like that, and aren’t the others in particular need?
This is a different experience with death than I usually see, but he has chosen to be where he is, and that is his decision, and his family’s not mine.
I was so bothered by these visits that I told Keith Mann, the Volunteer Coordinator, that this was the first Hospice patient I’d been assigned to that I didn’t want to visit.
I guess I had expected him to tell me not to bother, although I should have known better.
“Those are sometimes the ones you really need to go see,” he responded. I thought a lot about that and understood what Keith meant.
So recently, I left Lenore home and piled Izzy in the car and we went to see this man, in this spooky house and difficult environment, and I took a deep breath and rang the doorbell and shuddered, and reasoned that it doesn’t matter what I do or don’t like, these visits are about offering comfort and support to someone approaching the end of his or her life.
If it matters whether I am comfortable, then the visits are about me, not them. An easy trap to fall into, but not the point of the work.
It was also true that the visits with Warren and Helen were so powerful, and yielded many rich things – poems, photos, conversation, love – that I needed to turn my head around and get back into the real world of Hospice, which is sometimes loving and warm, sometimes painful and disturbing. This man’s passage is painful and disturbing. Is my responsibility any different?
So Izzy and I stormed the house like Marines heading for a beach. I brought photos of the farm, a couple of flowers plucked from my garden, a short story to read and the Soul Dog. We swept into his room, past the clucking nurse, propped up a photo of the goats, and saw him smile. Then I read him a short sports story – he is a football fan – and he nodded and grinned.
Then I called Izzy up onto his bed, and Izzy slithered up alongside of him, and put his head on the man’s shoulder. The grin was wide, and he nodded enthusiastically, more relaxed and at ease than I had ever seen him.
A half hour we left, promising to come back in a few days. I called Keith and said, “hey, you were right about this visit. These are ones you need to make.”
It might be the most important Hospice visit I’ve made.

Helen, Izzy. Dust to dust.

Tuesday, May 6th, 2008


Izzy was faithful to Helen and Warren to the end. During the service, he lay underneath
the casket until it was over.

May 6, 2008 – So this, then, is the last Hospice Journal entry for Helen, and for the experience of visiting with her and Warren, and Izzy and Lenore, for the past few months.
Selfishly, this was a gift to me, as a human, a writer, a spiritual seeker, a friend, a photographer and lover of dogs. I will miss it. The Hospice Journal will continue, but this chapter ended today, when Helen was buried in the family cemetery in Hebron, N.Y.
I will be thinking about this encounter for a long time, but tonight, Rose and I took the sheep out and I thought about the point of it, the meaning beyond the obvious power of a great love story that ended inevitably and tragically.
First, it was an affirmation of life. As Helen put it, she loved being Helen and loved sharing her life with Warren. At the end, during a long and debilitating illness, the couple shared many memories, and an affection that seemed undiluted by 60 years of marriage.
Then, it was an affirmation of death. More than anything, Helen and Warren wished for Helen to die at home, and for them to remain together. They got their wish. That is a victory, for them and everyone who faces this greatest of dramas.
Today, I felt a chill rush up my spine, as Pastor Steve McLean invoked the ancient words, “dust to dust, ashes to ashes.” This experience is over. This experience has just begun.
My encounter with Helen was an affirmation of the Hospice idea. Death is always sad, but it does not have to be depressing, and it can – as it was here – be beautiful and uplifting. Helen was not shunned, not isolated, not forced into a hospital or nursing home against her will, not pressured into undergoing more painful medical or surgical procedures, not abandoned to the health care system, not separated from her family or her garden. She and Warren had to change, and their home had to change, but they accepted this with grace and humor.
Helen told me the first day we met that she meant for her sense of humor to be the last thing to go. And it was. Warren worked almost beyond human endurance to care for her, day after day, night after night, for long years. Such love is rare.
The Hospice social workers, nurses, volunteers, health care aides, and dogs made the last great goal of Helen’s life possible. I will continue to work on behalf of this ideal, and to try and ease the mistreatment of the dying, who are often isolated, abandoned, driven to the edge of life, and given little control over their final days.
My writing was affected by this experience, for what more could any writer ask than to be invited to share the story of Helen and Warren. My photography was shaped during this process. I acquired  new friendships,  a love of poetry, and learned much about the real meaning of love and life. I became closer to Steve McLean, a man of God and a great friend.
Then, and by no means last, I was rocked to the core by the work my dogs did, especially Izzy, who labored  to lift this couple up at their time of greatest need, and did. He made a difference. He comforted both of them, at every turn.
Lenore brought endless smiles and pleasure, but Izzy got in close and personal, day after day, under difficult and often unpleasant circumstances, and  offered them unwavering affection and loyalty,  and helped keep their spirits strong. I cannot begin to understand it, but am privileged to have witnessed it.
I honestly did not imagine, really, that a dog could have so great an impact on people at such a critical time in their lives, but I am a skeptic no more on that idea. If Izzy does not have our idea of a soul, the one he has is powerful and pure.
For thousands of years, dogs have shown their glory in service to human beings, and I have felt this ancient connection strongly in Izzy. Today, he lay under Helen’s casket. At the cemetery, he lay by Warren’s side. Whenever Warren reached out a hand, Izzy was under it.
So this is not the end, but a beginning. This has done as much for me as anyone. I am a better human being, wiser, humbled, awed.
Warren and I sat this afternoon and, exhausted, wracked by shock and grief, he is beginning to think ahead, to “the rest of my life,” as he put it, “without the other half of it.” I will be there with him, insofar as he wishes me to. Another gift to me.
The Hospice Journal goes on. The photos go on. The work with the dogs goes on. I am eager to hear new stories, and pass them along.
Tomorrow, Izzy and Lenore and I head out into the country to see a new Hospice patient, a dog lover eager to hug a dog as she enters the realm of the dying.

Izzy by Warren's side during the burial service.

I carry your heart with me

Tuesday, May 6th, 2008

May 6, 2008 -  Helen is being buried today, and I keep thinking of this E.E. Cummings poem, which I read to her and Warren many times, and which captures, I think,  their extraordinary love for one another. I will read it at the funeral service, and I will share it again with you. And some point today or tomorrow, Helen’s Hospice Journal will end, and others will begin.
  I hope and pray that she and Helen are correct, and that they will one day all be together on their hill. I do believe that.

i carry your heart with me

i carry your heart with me (I carry it in my heart)
i am never without it (anywhere i go you go, my dear;
and whatever is done by only me is your doing, my darling)
i fear no fate (for you are my fate, my sweet)
i want no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

 - E.E. Cummings

“Whatever you need, Izzy.”

Monday, May 5th, 2008

May 5, 2008 – Izzy’s Hospice work with Helen and Warren and their family continued into the weekend. Izzy reacted visibly to Helen’s death, lying on her bed, then curling up in the corner and sleeping for hours. He didn’t eat Friday or most of Saturday. In the afternoon, we went over to see Warren, and Izzy and Berta, Helen and Warren’s daughter, and her husband  Bob and two children, Brandi and Jessie, decided to be there for Izzy, as he was for Helen and Warren.
They gathered him up on the couch and took turns rubbing, loving and talking to him. “Whatever you need,” Berta kept telling him, “Whatever you need, Izzy.” It was what he needed. He became himself gradually, into Saturday and Sunday, but was still a bit lethargic, quiet this morning. I want to know more about what is happening between the dogs and the people they see, and I will begin talking to behaviorists and trainers about it, for Izzy’s sake and because it is a powerful thing to witness.
The bond between this dog and this family is now quite extraordinary, and it powerful to see them taking turns lifting one another up, comforting one another.
I think Izzy and I are being assigned as bereavement volunteers so that we can continue to see Warren after Helen’s funeral this week.

“It’s hard not saying we anymore.”

Monday, May 5th, 2008

Izzy sat in front of Warren yesterday, and kept other dogs, including Lenore and Berta’s dog Pepper, away from him.

May 5, 2008 – All day, Warren kept checking himself, whenever he said “we” referred to Helen in the present tense. “I guess for now there isn’t a we,” he said, “and I’m not sure I’ll ever get used to that.” Warren has a lot to get used to. He was married to Helen for 60 years, and sat by her side during a seven-year illness.
Over the weekend, life changed for  him, almost beyond imagination, and it will be a complex and difficult process for him now. Everyone who knows him is worried about him, and how he will react when everyone goes home, as they must, and he is along with the new reality. He admits to being disoriented, in shock, looking for Helen, talking to her.
Hospice care does not end when the patient dies. Social workers, nurses, volunteers will stay with Warren, help him in any way he needs or wants help. I am signing up as a bereavement volunteer so that Izzy and I can keep seeing him as part of Hospice care.
I told Warren everyone was worried about him yesterday, and I asked him if he was worried about him. He smiled, and shook his head. “I am just a bit fuddled now,” he said.
“But I am a fighter. I plan to go on with life.” Nobody who knows him doubts that.
Warren said he wants to speak on behalf of Hospice, and I said I thought that was a great idea.

___

On June 8, at 2 p.m., Gardenworks in Salem, N.Y., will host a presentation: “Hospice Journal: Pictures and stories from the edge of life.” Some of my photos will be on display, and I will talk about my Hospice experiences and Hospice officials will talk about Hospice, and of course, Izzy and Lenore will be there with their ID’s on. This is the first showing of the Hospice Journal photos. There have been a number of requests, so there will probably be others. Haven’t decided yet about selling any of the photos, but if we did, proceeds would go to Hospice. Warren has asked that anyone so inclined should please contribute to their local Hospice.
The number at Gardenworks is 518 854 3250. Warren says he would like to come as well. The public is welcome. “It wouldn’t embarrass you, would it, for me to be there?” he asked me. No, I said, I would be very proud to have him there.

Death is in the details

Monday, May 5th, 2008

May 5, 2008 – One part of the process of dying is over, for Helen, but for Warren, another, complex phase is just beginning. Death has a life of its own, and is not in any way bounded, doesn’t begin or end here or there, but washes over lives and moves them around.
The family met today with Pastor Steve McLean, who baptized Warren a month ago, to plan the funeral services, a private gathering set for Tuesday, followed by Helen’s burial. Steve will preside over the funeral, and his very presence in Helen and Warren’s home was comforting, as his gentleness, humor, candor and faith are infectious. Warren was happy to see him, as was I.
Steve, who I always call a hound of heaven,  said humor is an important part of grieving, and we went over the poems and talks and we talked about Helen. Steve doesn’t do anything by the numbers. He wants to be involved in all of the details, know all of the people.
Death is a complex affair, and the phone never seems to stop ringing. All kinds of people stop by – neighbors, friends, people bringing food. A funeral is not a simple affair either, and here are a thousand things to decide and go over, from flowers to caskets. Warren has asked me to be a pallbearer and to read some poems and talk about Helen, and I am honored and flattered to be invited into the service by this family. He wants me to tell the story of the night of Helen’s death, when we all laughed with her, and he is pleased that the last thing she heard was the 23rd psalm, which he wants me to read tomorrow.
It is striking how many mundane concerns follow in the aftermath of a death, and just at a time when the grieving would seem to need to be left alone. But I suppose there is plenty of time for that. I’ve signed up as a Hospice bereavement volunteer to stick with Warren when the funeral is over, and life has to return to normal, or what passes for normal. I will meet with Hospice bereavement counselors to make sure I know what to expect. I am also Warren’s friend now, but I’ve learned to take Hospice training seriously. You always seem to need it.
Most of the Hospice caregivers have to move on, and Warren’s family have to return to their own lives, and so, of course, does Warren have to face the moment when he is alone in his house and his life without Helen. I’ve learned not to underestimate Warren, and he’s already told me he wants to get involved in Hospice work, among other things.
He says he is prepared. He has plenty of memories, he told me, and they are all good ones, and he will be with Helen soon enough, he is sure. In the meantime, he is handling the many details of death with composure, humor and openness. He admits to being in shock, being exhausted, feeling overwhelmed. He takes calls from relatives, eagerly listens to stories from the outside, thanks everyone for their concern remembers stories about Helen. He is still almost always thinking of Helen, not in any way surprising.
I suspect he will, in many ways, savor the quiet time and use it to think back on those 60 years of love and shared experience. He will also suffer.
Once again, we sat and laughed and traded stories, and the warmth and affection in the room, hand in hand with grief, was powerful, healing I think. Death is all encompassing. So is life. The duality is always there, right under your nose.
Izzy and Lenore seem to think of this house as theirs. Lenore goes around and collects bones and toys, and Izzy greets everyone and curls up in the corner, still not quite himself.
Bit by bit, the house is returning to a new state of normal, resembling the old state. The hospital and medical paraphernalia is gone. The tables and lamps have been cleaned and dusted, and things are getting back into place. Warren no longer has to sit glued to his chair all day, using the table as a desk. He can use the real one.
The sofa where Helen lay when we first met her is gone. Berta and her husband Bob have aired out the rugs, cleaned up the kitchen, removed the medical supplies, vacuumed and scrubbed, and tossed out the tubes, lotions, bedpans and pills that were slowly taking over the house.
The house that Helen and Warren bought a half century ago is neat as a pin, fresh, but of course, it is not normal, can never be normal. It is absent the loving and gentle presence of Helen.
People ask Warren how he is all the time, and he says, fine, I am fine.
I think it might be true.
I am tired, it’s true, but I feel strongly about the Hospice Journal, and about posting faithfully through to the end of this experience, and the end is not always clear, or in sight.
People ask me how I am, and I am puzzled by the question, as my loss is nothing next to Warren’s, and I always remember – always – that Hospice is about death, and that is always what happens, and if you are not prepared for that, do something else. I will hang in there with Warren, insofar as he and his family wish me to, for me as well as him. We have shared some of the most intimate moments of life together, and that seems eternal to me. But there are lots of people waiting to see Izzy and Lenore, and they don’t have a ton of time, and we need to go see them.
I am drawn to this work on the edge of life, to using my gifts to ease the loneliness and struggle of the dying, to working with these dogs and bringing their amazing gifts to people in sore need of them, to writing about it, to taking photos that help lift the curtain on death, that explain Hospice, and to hearing and capturing the stories of the people we meet, the fabric and tapestries of life itself.
I’m fine.

I’ve seen many clergyman rush through ceremonies like funerals, almost skating over the event, but that is not Steve’s way. He is serious about faith, wants – needs – to know people, and his  passionate love of Christ is sometimes overshadowed by his deceptively easy manner. Steve doesn’t skate over things. In the hour he was in Warren’s house, he saw all there was to see and made sure he understood Helen, whose funeral he will be presiding over.