Measuring Time in Hours

Lucie Adams

The first time we saw Monique, she'd just beentold she had advanced cancer. She was also going to go to Oncology for some chemo, possibly, but she came to us, at the Palliative Care outpatient clinic,sent by the Palliative Care physician who saw her at Lung Clinic, that day.

It was late afternoon, April, rainy, and I needed to complete my paperwork, lock up the clinic, pick up my husband and go home. It had been a long day.

But then, Moniquewalked in, with her tardive diagnosis, alone, panting, pushing back her waist-length black hair, and I invited her to sit. She chose a straight chair, the most uncomfortable one, like she planned not to stay long.

Whatever time she actually spent with me went by so fast! A workaholic attorney in her early forties, Monique uttered nothing that didn't matter. Long into her assessment, she told me she was about to marry for the first time,so I stood up, pulled my chair closer, and congratulated her heartily, knowing full well that whomever she was marrying would soon be widowed...

She stayed breathless throughout that first visit, but paid it no mind ­ she allowed this difficulty in breathing very little space. She was so articulate. She spoke as if she were writing the final draft of an essay. I found her a joy to listen to. I forgot to take notes.

At some point in an article on Palliative Care, I'd read that you have to love the patients fast. Well, I wanted to love Monique even faster, because I wouldn't have minded hearing more of her story at that first meeting. To think I just wanted to go home after my clinic! To think I could have not met Monique! To think, really, that nobody would have made my day if ithadn't beenfor her...

Monique was, if nothing else, fully determined to survive her 3-month prognosis. She was going to prove to everyone that miracles do happen.

Shebegan chemo, and, alongside that, we were managing her pain. Her cancer was spreading; her response to chemo was poor, and the disease continued to ravage her. Interestingly, before starting chemo, Monique had her beautiful tresses cut off so she could donate the hair to make a wig. But the wig wouldn't be for her. It would be for a cancer patient undergoing chemo! As if she, herself, wasn't that cancer patient! As if she, herself, would be completely cured, and her own hair would grow back...

How I loved her stoicism, and her business-like lack of drama! How I admired her courage! How I felt awe at her humble, selfless generosity!

When I met her boyfriend in May, a man younger than herself, I said very little to him, and figured that Monique may have guessed at my disapproval of him. These things never get spoken, but they do get said, somehow, when you're "loving them fast"...He was needy, and she was dying.This looked, if anything, like a most incompatible union. My heart sank for her. But never mind. She had to live this bit of life she had left. She had to live it her way.

Monique's latest scan showed brain metastasis, but this news anchored her in becoming even more relentless with her plan to live. With her parents deceased, and her sister not really that close, she held on, fiercely, to her independence and autonomy. Never did she talk about the law practice that had been her consummate passion for so many years....What she did talk about was the new house she'd bought in the country, and how much she would enjoy relaxing in the hot tub she'd ordered.

She was becoming weaker, more tired, more drowsy. Also, there was more pain, but talk about her symptoms was terse, cursory, almost dismissive.

Her boyfriend left her. She'd made all her arrangements,and then,the June wedding never happened. The break-up started over a silly argument about something she'd lost, or temporarily misplaced, having put it at the back of a drawer. She cried. I touched her. She felt warm, maybe even feverish, but her temperature was of no concern, compared to her broken heart.

At the end of June, Monique moved in with her sister, brother-in-law and young children. Her sister, a primary school teacher, knew nothing about the care Monique needed, wished Monique would agree to be admitted to a facility, but didn't have the heart to tell her this....It was as if she wanted me to inject her, or infuse her, with some hope for their whole family; as if hope were a commodity that could be shared among all of them, equally. As if hope brought the same satisfaction a chocolate fix might. As if it would all go away, this business. As if Monique were not going to die. As if life would go back to before Monique got sick....

But there was no magic solution. At the clinic, we'd seen Monique maybe 8 times total, and with each visit, the deterioration in her condition was markedly noticeable. She was changing fast. Dying. And she wanted to be at home, or at her sister's home, which now had become hers because she could no longer care for herself, couldn't feed, wash, toilet herself, had blurred vision, and was spending all of her days and nights in bed, diapered, just trying to breathe. She was getting oxygen at home. She had a visit scheduled for mid-July with us.

Right after the Canada Day holiday, I got a call from the community health clinic nurse who'd gone to the home. Monique couldn't swallow anymore, and was receiving her medication subcutaneously, through a butterfly needle, which her sister had been taught to use. Monique was spending her time in a state of confusion and disorientation, but she was not agitated. She was calm, and awoke for briefer and briefer periods of time...I asked to speak to Monique, if she was awake, and if that was okay, andher sisterput me on. In her weak, feeble whisper, she said her hello to me and announced that she was in bed. What a joy it was to have her remember me throughthe murky terrain her once-sharp mind had become! I had the chance to thank her for being her.I knew her for the last three months of her life, and ourtherapeutic relationshiphad lasted hours, the hours of her clinic visits.

Monique died a few days after that, as she'd lived, passionately attached to that which was important, at the moment it was important. She died with herfamily close by. She died having made friends with her sister's tears.

I worried about Monique's sister and was getting ready toarrange for bereavement follow-up when a bouquet of flowers arrived at the clinic, thanking us for everything we did for Monique, and for their whole family. I knew, then, that everything was going to be all right.

It was when the letter of condolence to Monique's sister was brought to me to sign, that my eyes welled up and spilled over, but just for a terse, cursory moment....

© Adams, Lucie. (September 2006). "Measuring Time in Hours" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Lucie Adams, RN, BA
McGill University Health Center, Palliative Care
4 Yuile Street, Kirkland, QC H9H 5K6 CANADA

Sam Federman ­ A Song Can Save Lives

Michéle Chaban

I had been working on a cancer floor for some years when I met Sam (his real name used with permission). Our team had come to identify those who had a potential history of harm and so as a matter of course, if one of the team felt this might be an issue, an automatic referral was made to social work.

When I first set eyes on Sam he was lying in bed, sheets pulled up to his neck. His nose hung over the fold of the sheets. It seemed like a pose that accompanied sheer fear. His wife sat beside him in his room. I introduced myself. Only the twinkling of Sam's eyes, the wrinkling and crinkling of his face denoted a smile .

When I introduced myself, the sheets came down and then I saw Sam Federman's glorious face shining like a rising sun. He emulated life and joy. I thought this could hardly be a man who had been through the kind of harm and hurt that so often accompanies the survivorship of war and incarceration. Sam listened to my description of our team and our service as I asked if there

was anything I might do to help him. He was most appreciative of my time and my efforts. He thanked me profusely. On the day of surgery his two fine sons and his mother paced the hall, waiting for him. When he arrived they hovered protectively. This intensity seemed familiar, reflective of the others who had not only come to the floor for surgery but who had a history of having been in concentration camps.

I approached one of his sons. As I did so he thanked me for all that I had done. I was not quite sure I had done anything. I said "please think nothing of it, it is how we work around here as a team". He then said his "father had been terrified of coming in for surgery but that there had been an extra something in everyone he had met that made him feel he was not only safe but that his fear was deeply understood". I then took the opportunity to ask Sam's son "where was your father during the war"?

His son looked deeply into me, one of those searching looks that animals send out as they sniff the air and ask if they might trust what they sense as your being. He then said "Aushwitz". I looked to the floor and said "I see, we thought that might be the case and that was why we were so protective". He then asked "how we knew" ? I said "we didn't , we just have seen a lot of holocaust survivors on the floor coming in with illness, we don't know if it was the conditions in the camps, what they ate, or the starvation they endured, but now they have problems with their gastro-intestinal system."

Later, I would talk to Sam about how we might have made it easier for him and his family to undergo surgery. He assured me that the team had accomplished its goal. It seemed to me if we had done well, he never should have had the sheets all the way up to his nose in the first five minutes of being on our floor. Then again, if I had endured what Sam had endured, I might never have made it to the floor.

Over the coarse of time Sam told me his story. Sam was a young boy when he was taken to the camps with his family. His father and uncle protected him as much as they could. In the camps the stronger men were used to bury bodies. Each night, the men were put onto the back of a truck and taken to a hidden part of the forest where they were instructed to unload and bury the bodies that had died that day. The men knew that young Sam's survivorship depended on his helping them do this gruesome task. So each night his father and his uncle as well as the men around them, helped Sam seem more productive than he was in reality.

One night, the Nazis decided that some of the men were not carrying their own weight and so they buried them alive. Sam's father was one of them.

Later that night some of the prisoners stole back to see if any of those buried alive could be saved. Before he died , Sam's father asked the men of the camp to care for his son as if he was their own. They did.

Winter set in and burying became more difficult. On Christmas eve, the commandant and some of his men came to the barracks. They had been drinking.

It was a high and holy day and they were away from their families. They were sad and sentimental, lonely and angry to be separated from those they loved.

They came to take their feelings out on others. They came to shoot a few men for the sport of it.

One of the officers ordered that everyone get out of bed for an inspection. The prisoners lined up, fearful of what was next. The officers inspected the prisoners eyeing the ones that might be the recipients of their bullets. Sam was beside himself. His father had always taught him that something could be done when a bad situation was getting worse. Sam stepped forward out of the line of men. The older men around him gasped and reached for him, but the officers pushed them back. Sam stood before the commandant. The commandant looked down on him. Sam began to sing the only Christmas carol he knew from his home town. Sam sang with all the power and soul his lungs could muster.

He invested each word with joy and hope and love. This little Jewish boy sang with the spirit of Christmas, filling the barracks.

The commandant's eyes filled with tears. The other officers shifted about, with similar discomfort for what had just taken place. The commandant asked for the boy's name. Sam stepped closer and looking down at the floor he then quietly stated his name. The commandant said "Sam Federman, tonight your song has saved lives". The commandant turned and left the barracks, his men were ordered to follow.

Sam survived the camps although most of his family did not. When I met him, I think he was well into his 70's. He had married and had two sons. In his retirement, Sam would visit nursing homes and sing to those who now spent their life in institutional care. I asked why he did that. He said " a song can save a life".

I was so impressed with the life that Sam Federman lived and the spirit with which he embraced life that I thought something should be done to honor his humanitarianism. I spoke to the Rabbi at our hospital about my thoughts. I wanted Sam's story to go down in history. I wanted his story to be told.

After the war and after some time had come to pass, there had been an attempt to document the atrocities of the camp survivors. Sam told me that he had told his story to a documentarian. I asked if I might see it. Sam gave me a copy of the interview. It was a sad reminder of the suffering that Sam had endured. It was an even sadder reminder of our witnessing to his suffering. The interviewer sat passively and unmoved as Sam told his story, as Sam wept and wailed over his losses. Perhaps in those days, the ideas was to capture the story and storyteller and not allow the narrator to intrude upon the story. Yet once again, humanity stood by and watched as Sam suffered alone. I did not want this to be the last testament to Sam's life.

I had heard rumors about Steven Speilberg's "righteous man" award. I did not know more about it than its name but surely Sam Federman was a righteous man. The money from Schindlers List was being used to support the award. I set out to find out more about it. In the process of doing so, others started to make inquiries. In the end, I believe it was one of Sam's sons who made the arrangements.

One day, Steven Speilberg's crew arrived at Sam Federman's house. They set up their lights and cameras and they asked that Sam tell his story once again. This time, no witness remained unmoved. Sam told the story of how a song saves a life. Sam told the story about how it sometimes only takes one person to save many. Sam told the story about how even the most wicked of hearts can be turned if you dare to know them for their broken hearted ways rather than their wickedness, if you dare to offer them what their heart most seeks. At the end of his story, Sam called his sons to him. Both walk onto the set, standing behind their father. The meaning was clear.

Sam's father, his uncle, and the men that lived in the barracks had a legacy of helping each other, helping to remind others what was right and wrong even amidst such evil. Sam had survived because of the help of strangers.

Sam in turn had helped strangers to survive then and now, with his song. Sam had lived and given birth to another generation . The legacy of love and protectionism that had been taught to him by his father and his uncle was clearly passed onto his sons. It was evident at the time of Sam's surgery and evident in the film as his sons stood longingly and protectively near their father.

Sam and I would have many conversations as he came and went from the hospital over the years. A few weeks before Sam died of his cancer he sent me a copy of the film made by Steven Speilberg's organization and gave me permission to use his story to teach. He also had a tree planted in Israel in my name. I felt this was a tremendous honor that one such as Sam should pay tribute to me. I have had many occasions to tell Sam's story when I am faced with people's sense of despair around world events or the unfairness of a death in a family. I always conclude the story by saying "sometimes it only takes one person's song to change the world". Now that Sam can no longer sing, I would say "sometimes it only takes Sam's story to change a heart".

Chaban, Michéle. (September 2006). "Sam Federman ­ A Song Can Save Lives" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Michéle Chaban, MSW, RSW, DPhil
PhD Supervisor, University of Wales
Post Graduate Supervisor, University of Toronto, School of Social Work
Post Grad at Wilfred Laurier University
International Lecturer and Speaker

Oh No! Am I Still Here?

Melanie Corbier

My Mom. Eighty years old, pack-a-day smoker for 60 years, an avid gardener, mother of three, grandmother of 12. She was living alone (Dad had died five years previously) content with her dog as best friend, in a small community where all the shopkeepers knew their customers and Mom was a well-known figure on her daily walk to the Post Office.

When she was diagnosed with cancer of the lung, her first reaction was "Oh, good. I won't stroke and lie in a bed for 10 years," (her worst fear).

She decided on no treatment. "I'm 80 years old, had a good life, brought this on myself by smoking, and I have to die of something. Cancer of the lung is what it will be."

She had always regarded dying and a new life as the ultimate adventure, and was sure she would be joining Dad and others who had gone before. Having decided on no treatment, her next decision was to be open about her future with her friends, family and community. This openness brought the whole community into an unofficial support group over the next two years, as she visibly declined in health.

She also declared she had not time for this problem right now. She had contracted with her teenage grandson to re-build a large garden for the following June. It was to be all blooming in pink for a wedding and there was no time to lose.

I decided to start homecare services, starting with a homemaker, as I was spending quite a lot of time doing chores for Mom. We got a wonderful, tough, big-hearted woman, whose previous job was bartending in a local hotel! She wasn't very experienced as a homemaker but she was very willing and quick to learn. She was extremely funny with a wicked wit. She stayed 'til Mom died and we leaned on her in countless ways.

During that summer Mom worked on this huge garden project with her grandson being the muscles. As she got weaker over the summer, she did more supervising than work, but she never missed a day, until the snow came in late November.

Winter came and went. Except for fatigue (daily rests after lunch) she remained quite well. As soon as the frost was out of the ground, she and her helper swung into full gear, as they struggled to get this garden blooming for June.

Fortunately, it was an early spring. All the fall plantings came alive. The bulbs came up, the shrubs came into flower and the perennials actually bloomed on time. It was a huge success and brought a great deal of attention and admiration for the gardener and her helper. It was a crowning achievement!

For the rest of the summer she and her grandson worked on her own garden which had been neglected for most of the year. She felt fine, just tired and needing to rest after lunch, which she resented. She still walked to town several days a week. Winter arrived and she felt the cold badly. Her community cared well for her. When she was suddenly overcome with weakness in the Post Office, a kind man upended the garbage bin and sat her down until it passed. The variety store owner took one look at her another and said, "Mrs. C., are you alright?" She asked the next customer who came through the door to drive her home, which he willingly did. She was in good hands at all times.

Unbelievably, she made it to another spring. She was in a state of bliss to see her beloved flowers "one more time." Every bulb that came up, every flower that opened was a fresh miracle to her. That summer she really was obviously failing. Her color was gray, her weight dropped and her appetite was poor. She sat outside, unable to work but content.

My sister arrived during this summer to stay until Mom died. This solved the problem of Mom alone at night. She was getting pretty shaky on her feet. My sister and Mom created a book, with one page for each room of the small house. On each page was listed the contents of the room with a place where she could indicate who was to receive each item. She spent many happy hours bequeathing her many beautiful treasures to her loved ones.

As the summer drew to a close, many old friends and family came to see her and to say goodbye. They were a little unsettled by her openly talking and waiting "to go." She was getting impatient to see her loved ones and to see what the next life was all about. She remained symptom free, (continued to smoke, of course) only expressing a fear of pain. She never had any pain, nor any shortness of breath. As she became more impatient to die, we found ourselves saying things like, "Don't worry Mom. I'm sure you'll be dying soon," and "Just be patient, the end is in sight." This felt a little strange but we were definitely all walking together. She wanted to go on, so we were the cheering section. We laughed ourselves silly over all sorts of family jokes, daily events, decreasing activity levels; you name it.

Three weeks before her death, there was a marked change. She ate less, moved less, spent more time lying down. Any activity exhausted her. Her sense of humor sharpened and our homemaker was in her element. We were all a great team.

Two weeks before her death, a very friend 15 years her junior, died in a freak car accident. When we told her the news, she was quiet for a moment. Then she said, "She got there before I did," in wondering tones.

The last week of her life she was down to skin and bones and increasingly weak. She found her bed more and more comfortable so there she spent most of her time. I had also moved into her house and we set up a rooster of friends who sat the night shift for us. Mom was awake often at night and although she was still pain free, she was restless and needed to drink. Several times as I sat by her side, she would stop breathing and the hand I was holding would go cold, even a little bit blue. I would whisper, "It's okay to go Mom." Then she would take a big breath, open her eyes and sigh, "I thought I was going. Why can't I just get going?" She was really frustrated about being stuck here!

One morning, I was by her side as she awoke. She looked sleepily up in my face and said, "Oh no!" I said, "What's wrong Mom?" as she sounded very distressed. She said, "Am I still here?" I laughed and said, "You're still talking Mom so I guess you're still here." She resigned herself to living another day.

The last morning of her life she awoke but answered us from far away when we spoke to her. She drifted back into a sleep-like state breathing gently and peacefully. Then she just didn't take another breath. We held our collective breath not daring to believe she was finally on her way! The mood in the house was joy and triumph. We did it! Mom had died happily, peacefully, at home, with her family by her side.

Our favourite V.O.N. nurse walked through the door for her daily visit. We greeted her with laughter saying she was too late. Mom was gone! I remember feeling like we had all just won the race of our lives. Mom had finally made it! She was home!

© Corbier, Melanie. (September 2006). "Oh no! Am I Still Here?" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Melanie Corbier
R.R. #2, Colborne, ON K0K 1S0 CANADA

We Can All Do Small Things with Love

Margaret Cottle

The photos at her bedside record a family picnic: the children laughing and Susan and her husband Tom embracingher long thick hair shining in the sunlight.

The picnic and the hair are now only a memory. Lying in her hospital bed with crumbling bones and a bald head, she glances at the photo and says quietly, "My hair was beautiful once"

So many losses, but her deepest source of grief is leaving Tom and the children alone.

The members of their small church courageously share the difficult journey, faithfully expressing their love for the family in a many practical ways. One way, however, is particularly memorable.

Each of the four children, ages three to ten, has a special friend in different families at church. These families "adopt" one of Tom and Susan's children for at least a year after Susan's death. Soccer teams, piano lessons, birthday parties, trips to the park, school shopping, Scouts, swimming lessons, hair cuts, church, whatever the activities, Susan's children are included.

They live and sleep at home with their dad, but keep toys, clothes and pyjamas at their second "home" for "emergencies." This arrangement makes it easier for Tom to return to work,

frees up time for him to spend with the children at home and gives him space to grieve.

Before her death, Susan is profoundly comforted by her friends' commitment to her family. Thousands of small kindnesses follow.

The mother or father at the wheel of the car may consider transporting an extra child to soccer practice on a rainy afternoon insignificant. Mother Teresa knew better. She said, "We cannot all do great things, but we can all do small things with great love."

© Cottle, Margaret. (September 2006). "We Can All Do Small Things with Love" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Margaret Cottle
4574 W 15th Ave., Vancouver, BC V6R 3B4 CANADA

Implications of Mortality

Cathleen Fillmore

It was twenty-five years ago, when my mother called from Florida in mid-day. I knew immediately something was up. We stumbled through the mandatory small talk as I waited for her real message.

And here it was. She'd been diagnosed with breast cancer. There was, as she knew there would be, a stunned silence at my end. My first thoughts, I admit, were of myself and the terrible loss I was now threatened with. Without warning, mortality had shoved his thick ugly tongue down my throat.

After pulling up some platitudes, I hung up and tried to compose myself.

I was raising two children so holding it together was important. But my life, my world, were now in a long-term spin cycle.

When colleagues asked about my mother, I said "She's doing well." I sounded calm as I restrained my feral self from acting out what I really felt like doing ­ screaming, smashing windows and throwing myself on the floor in utter despair.

How mature is that?

It gets even weirder. For several months, my concern for my mother's health was dominant in my mind and I wrote and phoned her faithfully. Then I'd skip a week or two. Things went back to normal and the ambivalence I often felt about my mother crept back. She really could be annoying!

My younger son and I went to visit my parents in Florida for a week. My mother seemed to be holding her own as I gratefully slipped into the soporific comfort of denial. She had years ahead of her. Sure.

On the last day of my visit, I was sitting on the patio and overheard her tell a friend what she would never say to me, "I had such a sharp pain in my chest today, the worst pain I've ever felt."

A dagger flew into my chest and stuck there for months.

Fast forward a few years.My parents were now living in their hometown of Moncton, New Brunswick. Florida had become a figment of my mother's imagination as she wistfully spoke of going back.

"No," said my father emphatically.

Slowly and with great resistance, she released her dreams one by one as her life now became the circumference of a full circle in her wheelchair.

One of the stories I grew up with is that my mother was rounding a corner one day with the sun hitting her eyes when a total stranger stopped her on the street as he blurted out in astonishment, "Madam, you have the bluest eyes I've ever seen."

And so she did. In the words of a much-quoted former beau, they were "like bluest water, seen through mists of rain."

Whenever she would lament the aging process, I'd remind her that as long as she had those eyes, she'd always be beautiful.

She no longer had those eyes. They reflected nothing back to me, neither bluest waters nor mists of rain. They'd become translucent, a Bermuda Triangle zone.I feared if I looked too deeply, I'd fall right in.

The last day of my week-long visit with my parents fell on April first. As I walked into my mother's bedroom, she smiled and said "I was wondering how to trick you."

Well might she wonder. Bed-ridden and mortally ill, what magical powers could she wield? What wand could that frail arm wave?

Yet in the end, she pulled off the ultimate trick. She evaporated into thin air.

Her absence created a crater that I have had to skirt around.

And yet, there's something else here, something a little more sinister.

When faced with my mother's mortality, my love for her became pure and selfless. During periods of her rallying, it was tempered with ambivalence.

Back and forth, picking petals off a daisy, "I love her, I love her not. I love her, I love her not." The ultimate petal, of course, the only real petal is "I love her."

It's exhausting to sustain intense love - kind of like a muscle we as a species haven't yet exercised enough. Grieving is a process of weaving mixed emotions in an entire pattern. Mortality is a gift, it helps us access unadulterated love.

When it's my turn to draw this incredibly rich journey to a close, I hope my children won't struggle so much with their feelings. I plan to give them permission to be as ambivalent as they please.

And it's true, I canbe annoying.

© Fillmore, Cathleen. (September 2006). "Implications of Mortality" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Cathleen Fillmore
President, Speakers' Gold
1463 Davenport Road, Suite 205, Toronto, ON M6H 2H6 CANADA

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