A Lifetime of Music – Michele’s Story My first recollection of Michele Jones was watching her play the part of Marilla in Anne of Green Gables; produced and performed by the Scugog Choral Society in Port Perry, the town where we live. I wasn’t sure whether Michele had been typecast - was she by nature an austere, cranky lady, or, was she a terrific actor?

Over the next 16 years, I learned about the real Michele - she was a deeply caring woman, highly skilled at vision casting and implementation, passionate about the arts, especially music, a woman with strong values and ideals and an amazing actor with an uncanny sense of timing. Michele and I worked side by side in several productions over the years: she produced and I was musical director. We developed a way of working out the most impossible of ideas. It was through that creative process where our relationship germinated and grew into something that I will always treasure. Our last stage production together was in January 2009 at the Port Perry Centre for the Performing Arts.

It was with a tremendous degree of shock and sadness last March when our community learned that Michele had terminal cancer and was given twelve weeks to live. At first, like in any tragic loss, shock, denial and anger reared their visceral faces. But it was Michele’s own sense of acceptance that led the way for her family and community at large to accept what was going on. In fact, she wanted the Beatles’ song Let It Be to be sung at her memorial service. Amidst tears, laughter and genuine struggle to sing those words authentically, we did it, all 300 of us.

Michele asked me to come to her home on several occasions during those short months to play music. We had a good time sharing the songs she had grown up with, danced to, and sung in musical theatre. In our afternoons together I learned how Michele’s dad, Cedric, an avid music lover, made sure there was lots of music in her childhood home. She sang me one of his silly songs - all sixteen verses. Close to You was what she sang to her girls, Sharon and Liz, when they were little. Many of the 60’s songs had associations with Michele and Gord in their early years together—and I heard about them. The ukulele was Michele’s instrument of choice and she played me some of her favourites and Grandma’s special song for Charlotte, her granddaughter. Then there were musical theatre songs - she knew them all. Behind every song there was a vivid story from Michele.

In those sacred moments with Michele, there were several things that I will always remember. One day, Michele was lying under a blanket on the couch and I was playing gently and softly on her treasured heirloom piano. I played Room 217 style. The slower pace helped her relax and it wasn’t long before she dozed off. Some forty minutes later I began to play My Funny Valentine. The tune enlivened her - she sat up straight, began to sing and by the fourth phrase was standing and singing at the top of her lungs. All at once, I was filled with a horrid contradiction: I was sure singing couldn’t be good for her because her lungs were filled with fluid and she was expending a lot of energy. Yet I was equally sure it was the best thing for her because she was wrapped deeply in an experience that transcended the disease and let her keep living in the music she loved.

Another day, I learned there were even more distinct ways that musical memories nourished Michele. Michele had been a dancer and taught ballet. Whenever she listened to the Room 217 Classic Comfort album, an hour of classical piano music, it made her dance. Of course this was now a dance performed in her memories and imagination, but she lit up when she spoke of it. I believe the music stirred in her a sense of dignity and optimism when some of the procedures and episodes of her illness mitigated against it.

Music chronicled Michele’s life. Michele invited me to do the music at her memorial service. She planned the songs with care. It’s true that I had never played Five Foot Two and There’s a Hole in the Bottom of the Sea at a celebration of life service before, but the opening twenty minutes of music were a snapshot of a woman who loved and lived a lifetime of music and that wasn’t about to end.

Bev Foster

Bev Foster, Executive Director of the Room 217 Foundation, is an experienced performer, songwriter and music educator whose inspirational music includes the Room 217 therapeutic music collection. Bev has most recently founded the Room 217 Foundation, a not-for-profit corporation and registered Canadian charity, whose mission is to care for the whole person with music. For more information visit www.room217.ca.

The wise person who coined the expression “you die as you have lived” must have had many years of experience helping people at the end of their lives. Time and time again it has proven to be “right on” for me. A few years back one of my clients illustrated this saying the best.

He was a middle-aged man who had always worked hard and played hard throughout his life. In fact, two weeks before he died, in spite of the tremendous difficulties in getting him around, he insisted on having his teeth cleaned and getting one of his ears pierced with a diamond stud! Both were accomplished with a big smile on his face and a twinkle in his eye.

However, the ultimate surprise came at his prearranged funeral when, at the end of the service, Frank Sinatra blared throughout the church singing “My Way”!

I was surprised that no one told me about Hospice. I moved, gave up a good job, left behind my husband, and adult children, to provide care to a mother who denied that she was ill to both friends and professionals. She died six weeks later.

Then, my father's brain tumour came back. I ended up on anti-depressants, quitting the horrible job I took to move 430 km. NO ONE TOLD ME ABOUT HOSPICE. None of the nurses, physicians, or those involved in my mother's or father's care.

It was appalling. This is why I wrote a book about it and now volunteer with Hospice Muskoka. I have had 3 clients, and have advocated for pain meds for both my father and one of my clients. The nurses involved, and my father's physician, denied the amount of pain he was in.

My training from the Foundations in Palliative Care course has taught me that there are myths around pain management, and that there are excellent professionals in the field, but taught me how to advocate for others.

Patients and their families have taught me so much about being a palliative nurse. So often we get caught up in trying to provide good symptom management that we sometimes forget there are other aspects we need to focus on, which are also very important. A man reminded me of this a short time ago...

Doug recently lost his wife, Monika, to breast cancer, she was in her early 50's. They were a lovely couple but I never met either of them. I just worked in the background on this one, but I knew quite a bit about them. After fighting cancer for several years, Monika finally ended up confined to a hospital bed at home. The hospital bed made caring for her easier, made her more comfortable in many ways, but also created a barrier for her and Doug to be close. Doug actually bought another hospital bed so he could adjust it to the same height and position as hers so they could still have 'together time'. We all thought that was so lovely! He did a great job in caring for her, did everything possible and didn't shy away from any task. A couple of weeks after she died he called me to get the number for Hospice which he'd lost. I knew by now his family and friends had left and he was facing how life was going to look without Monika. It was a rough day for him. We spoke for about half an hour; he cried, I used more than one tissue myself, but I'm so glad we had the conversation! He told me, One thing you need to do... When you [nurse] come into the home and ask us [caregivers] how we are doing... I just stuffed my emotions down inside. I wouldn't go there... But you nurses, sometimes you have to shake us up a little bit. You need to ask, 'Are you making time, every day, to just hold the one you love?

I told him I would share with the nurses what he said. I have to admit, I've never asked that to a family member... For him, it might have helped.

Boy, I still have so much to learn!

Treasured Moments

By Rachel Hollingshead, Care Coordinator. The Dorothy Ley Hospice

Reflecting back, it is hard to believe that Ellie was receiving support from The Dorothy Ley Hospice for less than five months. She deeply touched a lot of lives during that short time, including mine.

I met Ellie and her husband Jim at their home in the summer time. Ellie was wearing shorts that hung loosely on her body because of her recent weight loss. Jim recounted the day and time that she was diagnosed with cancer; the moment that he felt his life came to a stop. He recounted the hospital appointments and chemo treatments that had been happening since. They acknowledged that Ellie, who was in her 60s, was very ill and may not recover, but they remained hopeful. One tender exchange stands out in my mind from that day: Jim dotingly applying cream to the chapped nose and cheeks of Ellie’s upturned face.

During that first visit, I mentioned the Day Program to Ellie as an opportunity to get out of the home, socialize with others, and get involved in some activities. Her face lit up and she decided on the spot that she would attend. Ellie loved the Day Program and made fast friends. One memorable moment that stands out was Ellie singing an old country standard – Please Help Me I’m Falling by Conway Twitty – joined by two other of her Day Program friends, from start to finish. There wasn’t a dry eye in the room.

Jim and Ellie treasured their quiet time, sitting in the park, or watching the birds eat the food Ellie left out on the patio. They declined most in-home support except for ongoing phone contact and visits with me, their Care Coordinator, and a weekly visit from a DLH volunteer to offer Ellie Therapeutic Touch, which she thoroughly enjoyed.

Jim took time off work to focus completely on supporting and spending time with Ellie. When asked how he was coping, he consistently redirected the attention back to his wife saying, “This is about her”. He would call me once or twice a week to (as he called it) ‘vent’ his frustrations and (as I saw it) his fears. He ended each of these calls with, “Thanks for listening to me.”

As Ellie’s illness progressed, they agreed to having increased support from the Community Care Access Centre, a visiting palliative physician, and to having a referral made to the DLH Residential Program just in case it should become too difficult to manage at home.

Toward the end of November, Ellie’s health further declined. Her pain and symptoms were not well controlled at home and the family requested a bed in the DLH Residential Program. With the support of the CCAC Palliative Case Manager and the DLH Residential Team, Ellie was admitted later that same day. It felt good to be able to meet them at the door, and to know that she was in a place where she, Jim, and their family would receive support from a caring and dedicated team.

When Ellie arrived, she appeared to be actively dying. However, with 24-hour care, she stabilized and lived for three more weeks. Jim, as well as Ellie’s sister, rarely left her side. Her son spent time with her each day. There was a lot of storytelling, a lot of laughs and a lot of tears. Jim documented much of this time with his digital camera, snapping photos of Ellie with those who came and went from her bedside. With support from the Care Team, we witnessed Jim’s grief move toward a place of reconciliation.

At Christmas time, cards arrived to a few staff at the Hospice who were known to the family. Jim honoured his wife once more by mailing the greeting cards that Ellie would have mailed if she had been here. In each card was enclosed a photo of each of us with Ellie who was smiling. A treasure!

I want this story to celebrate how I got through my life - words Anna Chomej shared with her VON Hospice Volunteer Visitor as her volunteer wrote Anna's life story. Anna was born in Germany in 1929 during the Great Depression. Anna compares her story to Anne Frank's as she and Anne had similar experinces and were the same age during war times. She immigrated to Ontario, Canada in 1953 during the Cold War.

Part of her right to immigrate meant Anna had to marry a man from Germany whom had immigrated two years earlier. Anna married John in December 1953. John had been a POW in Germany and was beaten so severely during the war that he was not able to have children. Anna worked at the Psychiatric hospital as an Occupational Therapist for many years. John and Anna adopted their only child, Susan in 1967. I have been very blessed throughout my life. Although all my family was still in Germany and John's only family was in Poland, we created our own family here in Canada.

Even though we were not all related by blood, our family has been perfect. John was diagnosed with Alzheimer's and lived with this disease for 20 years. In 2007 John's battle with Alzheimer's ended while he was living in a nursing home. Anna was diagnosed with Ovarian cancer and given only a short time to live. Anna was matched with a VON Hospice Volunteer in 2007 and she continues to visit with this wonderful volunteer every week. Within two years, I had six operations, a plate put in my foot because I collapsed while I was weak from chemo, I had three hernia operations and surgery on my throat. Here I am three years later, still embracing life. My time will come. Despite all the commotion through her life, Anna can proudly say that she has achieved many things.

A Life-Changing Moment – Amazing Grace

In late summer, Gramma and I sat out in the yard together working on a jigsaw puzzle. She wasn’t going to get better – we all knew that – but, she was determined to make the best of the time she had left, whatever that would be. We didn’t talk about her dying, then.

I started back to school. It was a busy semester…or maybe this was just an excuse I was using to avoid bearing witness to her inevitable decline.

The cancer had spread, and her body was slowing...was disappearing. I got a call from my mum, confirming what I’d already been thinking. I needed to come home and visit again. It would be the last time.

It was a rainy Fall afternoon. We drove in silence. I remember only the rhythmic swipe of the windshield wipers. When we pulled into the driveway, my mum turned off the car and sat for a moment with her hands in her lap.

“I just want you to be prepared. She’s lost a lot of weight in the last few weeks. She won’t look the way you remember her.”

I nodded. We both got out of the car, took a deep breath, and went inside.

Gramma was in bed. Mum sat down next to her. She was so impossibly thin; a shadow of herself. Her skin had a greyish tinge. It was hard to look at her. I didn’t want this image to be what I remembered. I wanted to remember her laughing in the garden.

She noticed my discomfort. There aren’t always words for times like this, but it was her voice that reassured me.

“Hi, Honey. I’m glad you’re here.”

She sounded as she always had, though tired. Really tired. She touched the bed next to her, and I sat down between my mum and her, and I took her hand. When I looked into her eyes, I saw her as I had always known her. My own eyes welled up with tears, and it was she who squeezed my hand, reassuring me that it was okay.

I don’t remember just what we talked about, but that visit, that moment in time, stands out as being one of the most poignant of my life. Three generations of women sitting together on the bed, holding hands, crying, laughing. We were strong, the three of us, each one somewhere between the immensities of life and death.

It was that moment that influenced my career path. A couple of years later, when my own heart had taken the time to heal, I returned to school to complete my Master's degree in Social Work, with a clinical focus on life-threatening illness, loss and bereavement. And, to this day, I continue to learn some of the most valuable lessons in life on the front lines of hospice palliative care, from those who are coping with dying and loss. My life has been touched, hundreds of times over, by the lives (and deaths) of the people I have served, and it continues to be a great privilege.

Being a Volunteer

I took the Hospice volunteer training last year and got so much from it and was inspired to reach out and touch some of those struggling with their grief. I live on a gulf island so sometimes its difficult to get involved in the big scheme of the hospice. A friend and I decided to offer a group here on Gabriola to support our local population. We have met a few times so far and I just feel so privileged to be apart of their journey and to hear their stories.

If we could all share with others more it would make the journey more bearable and make it such a growing experience. Remember the giver often gets double in return!

When I began Nursing in the 70’s, Hospice palliative Care was unheard of on the surgical unit where I worked. The few patients that came close to dying were treated and then transferred to ICU no matter how hopeless their condition. Our job was to make people “better”. I experienced my first case with a patient who was at end of life due to liver cancer in 1983. She was given steadily increasing morphine IV, and received the best nursing care from a clinical standpoint, but looking back there was no attempt to deal with, and in fact no comprehension of, the “total pain” she and her family were experiencing. I knew something was missing, but had not heard of Hospice Palliative Care, so did the best I could based on the knowledge I had. When my mother was diagnosed with cancer in May of 1991, I was working in a Nursing Home, caring for my parents in their apartment in my home, and bringing up two young children. Since I was the youngest in my own family, and the only Nurse, my 2 sisters and my brother, who lived at a distance, expected me to co-ordinate the care. My mother chose not to have treatment, and so came home to spend her last days with her family. After Mum came home, there was a knock on the door, and the VON Hospice Palliative Care Co-ordinator explained they were there to provide Hospice Palliative Care Support. I wasn’t sure what that meant, but Mum and Dad agreed to have a volunteer come to visit. To tell you the truth, I wasn’t sure why a volunteer was needed, or what they could do. 2 volunteers began to visit regularly, Becky and Mary Lou, and they were wonderful to have around. You see my mother and father had always been at odds; my siblings and I often wondered which parent would be most likely to die first, and which would be most relieved when an end came to the constant bickering. Mum really needed someone to talk to and confide in, and Dad needed a distraction. Mary Lou would arrive with soup for our supper, or in an afternoon so Dad could go to the Legion. Becky would take Mum out in the wheelchair for a walk and maybe a cigarette if she were lucky. It was a relief to have someone else to care who could “lovingly detach”.

I had no idea about pain and symptom management for end stage cancer. The Nurse who visited didn’t either, and she would take Mum’s vital signs and write in the chart and leave. I asked her to help me turn Mum one day and she couldn’t because she had a bad back. We had no PSW since I had agreed to do the care, so Dad received homemaking instead.

Mum and Dad celebrated their 50th wedding anniversary in July of that year. Although it was a challenge to prepare for the celebration and welcome guests from England and Western Canada, the day went off beautifully. I even had a cot just off the banquet area for Mum to snooze. She didn’t require much rest that day because she was busy talking to her old friends and family. She wouldn’t let us tell them about her prognosis, but we finally began to do so quietly, so that they could say goodbye. It turned out to be a special and wonderful day. The restaurant opened the double doors from the banquet hall to the main stage, and had the entertainer play “Apple Blossom Time” Mum and Dad’s favourite song, so we could sing it to them. On August 25, my mother died. The family had all arrived, and had taken turns sitting vigil with her. Like I said, the symptom management was new to me, so all I could do was give her morphine subcutaneously, and turn, or reposition her, give her mouth care, sing to her, and hold her hand or lay beside her. When my sister called all of us to say something was different, she began gasping for air. Her final moments were difficult to watch, until she was at rest. My father felt her presence for weeks. He was morose, and I didn’t understand what he was going through. Their relationship had been tempestuous, and I wondered when he would “get back to normal”. I cried often, and especially when the patients I cared for were as frail as Mum had been. I sought grief support for my kids, to help them deal with their feelings. 6 weeks from my mother’s death, my father died of a broken heart.

Since that time, I have done a lot of soul searching, and have taken ongoing training in Thanatology (Grief and Bereavement) and Hospice Palliative Care. I am certified in both areas now. I am involved with a Hospice Palliative Care program providing advocacy, Day Hospice, Volunteer co-ordination, and Bereavement Support. My life is a series of special encounters with those who are facing the challenges my family and I faced. I teach Hospice Palliative Care to volunteers or in the community. Through helping others like my mother and father, I am making amends for the knowledge and understanding I lacked. I am very vocal about the need for improved Hospice Palliative Care, and against euthanasia or assisted suicide which I believe has it’s roots in poor pain and symptom management and a lack of Hospice Palliative Care resources and funding. I have a voice and I am learning how best to use it.

The real story of Susan Blake's time in palliative care is not that she died there, but that she lived there.

Susan was an American. She had a fine career as an English professor at Lafayette College in Easton, Pennsylvania. We met in 1991 and “commuted” between Easton and Saskatoon until Susan took early retirement and moved here to stay in the spring of 2006. On May 11th, 2009 she was diagnosed with advanced pancreatic cancer. On September 1st she moved into Room 579 of the palliative care ward of St. Paul's Hospital in Saskatoon. It was where Susan needed to be, and it became our home. We had been well treated elsewhere in St. Paul's, but as is usually the case the people on the palliative ward were special. The nurses took time to chat, and they learned to read their patients very well. They sometimes knew when Susan needed her meds just by looking at her, before she knew herself and without checking her charts. Susan was so strong of spirit, so forward looking, so clear eyed about what was happening. And so were the doctors and nurses on the ward. There was a serious disconnect, however, between what they actually did and what doctors elsewhere in the hospital thought they did. Susan was told, for example, that the IV fluids she needed would not be available to her on the palliative ward due to their non-interventionist ethos. But by then she knew better.

In fact, Susan received very aggressive treatment in palliative care. Her idea of hell, for example, was to have to live with a nasal-gastric tube, but that was the only way to empty her stomach once her bowel was blocked once and for all. Surgeons who had operated on her and some well-informed medical friends of ours agreed that surgical intervention to insert a more comfortable stomach tube was impossible for her. The doctor in charge of palliative care, however, listened quietly, nodded, and said he had another idea. A day later an interventionist radiologist using an MRI that enabled him to see what he was doing threaded a stomach tube into Susan's tangled innards. That was literally a new lease on life for her. I am convinced that Susan gained four or five good weeks of life that she would not otherwise have had. And certainly not have enjoyed. Equipped with a wheezing old portable stomach pump and a pile of meds, she could even go home for a few hours and sit in the garden whenever she felt up to it. She also benefited from many other ingenious and thoughtful touches from people on the ward who really would do anything to help her.

Shortly after Susan's diagnosis turned our world upside down, we remembered the wonderful blog that our friend Lorrie wrote when she was dying of cancer. We remembered that she had used an American site, CaringBridge.org, which is free to anyone, very reliable, and very simple to use. It is intended for people and families dealing with illness. To keep medical and other private matters private, these blogs are hidden from Google and other search engines. You can really only find a CaringBridge blog if someone gives you the url to their particular site.

On May 20th, 2009, I set up Susan's blog. I sent the url out in emails to friends and told them to pass it on to other friends. We started writing every day, and soon realized that if we tried to take a day off it just made everybody very anxious to know whether Susan was ok. Every evening we would almost forget to do it, then crack open the laptop and try to process what had happened that day. Sometimes nothing, so we would write about that. Sometimes something bad, and we would write only so far about that. We developed protocols. We would say that friends visited, but seldom said who. We wanted our story to be honest and true to our experience, but also generic enough to be of interest to family and friends who didn't happen to know most of the others in our orbit. Almost everybody we knew checked in on the blog, especially as things became more intense. When I got home from the hospital late in the evening, I almost never had phone messages to return or calls to make. That alone made the blog worthwhile.

I wrote every day, and when Susan felt up to it we wrote together. I did the actual typing and most of the composing, she did the editing and shaping and fine tuning – all by ear. She rarely looked at the laptop screen, even though she was perfectly capable of doing that for herself. Only once did Susan write a solo piece. I arrived that morning to find her sitting by the big picture window in Room 579, typing away. I knew that whatever she needed to say must be special.

Tuesday, September 8th 2009.

When I was in college I aspired to “the unencumbered life.” I remember standing around in the hall in front of my dorm door with Sandra Richards and Peggy Prance trying, unsuccessfully, to put up some door art to that effect. The idea was to simplify clothes and schedules and chore lists to actually have time for “the intellectual life” we were supposedly there for. It was unsuccessful, of course, because in lots of ways life is about encumbrances.

Now I'm seeing what one concept of the unencumbered life is really like. I'm not even wearing my own clothes, let alone fashion (the pink and black pajama bottoms are from the left-over and hand-made bin in the Palliative Care unit, “Ladies pj's and tops,” and the black polo shirt that accomodates the stomach tube and IV line is from my Lands End pile at home); as for schedules, there are no meal times for me, I'm always here, except when I'm not, and I don't know when that will be; and I've had to accept that other people will take care of the house and dogs and my dear dad. Life is stripped to its essentials. From this vantage point, the essentials in life are other people.

In this context I think of an electronic Christmas card I received last winter from a dear friend who also feels cut off from part of her life, because she is French and lives far from the French mainland in La Reunion. Loosely translated, the card begins “This Christmas, instead of sending cards or gifts, let me try to construct a Christmas tree in my heart.” The branches become the friends one has made over the years: “Those distant and nearby. Those whom I see every day and those I see rarely. Those I've been in touch with constantly, those intermittently. Those I've known in difficult hours, those in happy times. Those I know deeply, those I've met only recently. A tree has roots deep enough and branches wide enough to accommodate all those who have come through my life.” This is not Christmas, and the message depends in part on the mobility of a web site, but I like the metaphor of life as a tree of friends. So please know that I am thinking of you and grateful for you. If you are nearby, stop by. If you are distant, I'd love to hear from you.

Susan died on October 28th, 2009, in Room...

Highway 6 Palliative Care (Box 310 Ashern, MB) completed the Hike for Hospice on Sunday May 2nd, 2010. It was a snowy/rainy day for the walk but afterwards we met back at the Government Building for free Hot Chocolate, Coffee and Tea which was donated by Ashern Service & Jean's. We also had fresh cookies donated by Just My Kind of Bakery.

In attendance were committee members Maritta Sinisalo, Darlene Springer, Patsy Klyne and Helen Webster, along with community members Donna Webster, Margerett McLean and Jarmo Sinisalo. We even had some young community members, Brodie Geisler, Evan Geisler, Shelby Webster and Dylan Webster.

We raised about $1800.00 in pledges and donations. We greatly appreciate all who attended and brought in pledges for our Hike.

Great Job!

The first patient I nursed who was dying from AIDS taught me so much and alleviated many of the fears we all had.

She was a young lady (early 20's) and was married and had no children.

This was almost twenty years ago and was at a time when we knew little about this disease.

Her determination to not infect anyone else at all costs still inspires me today.

She was requiring total care and I went into her room and washed and dressed her in the morning. She was a very pleasant person and a joy to be with. When I finished her care I went to the patient in the next room.

A short time later I needed something and went into the supply area to get it.

I could hear the lady retching and knew she was getting sick. I ran into her room and pulled out the emesis dish and held it as she threw up.

She became hysterical and was screaming at me while vomiting. I had never seen her like this and was very concerned about her.

When she finished vomiting and I managed to get her calmed down enough to understand her she was repeatedly screaming do you have gloves on. As sick as she was her only concern at that time was for me.

This very brave lady inspired many of her caregivers and she was one patient that I will never forget.

I am the Coordinator of Volunteers for Morris/Emerson Palliative Care. Among other duties, I work as an educational resource to a group of palliative care volunteers established in 1992 in the Red River Valley region. Together we have worked to integrate palliative care services and grief support into rural communities.

Today, Betty Dyck and I want to share with you some of our experiences of rural palliative care …

• I will tell you about Morris Emerson Palliative Care

• I will tell you how we got started with Pet therapy

• I will tell you about a very special client who copes with the affects of Multiple sclerosis

• And finally Betty will tell you how she put the therapy dog program into practice working with our MS client.

When I look back close to seven years ago I realize what a privilege it was to be hired to work with the Palliative Care Volunteers of the Morris- Emerson area.

I was interviewed by three administrators involved with overseeing the palliative care programs in Morris and Emerson, including the Central region’s Palliative Care director, Jan Marie Graham. However, the real interview came my first day on the job. My advisory team consisted of several nurses, mental health workers, and clergy and community members from a wide area at the time called the Red River Valley Health District. After the meeting and formal contract signing, it was arranged to have me meet with the volunteers.

This was my ‘real’ interview. These volunteers are a strong group of kind and gentle folk who had made a commitment in the last number of years to expend part of their time and energy toward the palliative care program.

The symbol of palliative care in the Red River Valley region is the butterfly. Despite representing a delicate insect, the butterfly is also an enduring one. I learned this summer that the Monarch Butterfly migrates thousands of kilometres in vast numbers twice a year, a feat likely not matched by any other insect on earth. The Monarch has been observed flying more than 1 km above the ground. (http://www.hww.ca/hww2.asp?id=34) .

In the Red River Valley facilities we have signs posted about our butterfly pins that are a fundraiser for palliative care. The sign features the butterfly and the caterpillar explaining that “What the caterpillar calls the end, God calls the butterfly.” So the butterfly is a symbol of hope in our communities. It is also the name of our yearly fundraiser, the Butterfly golf tournament.

Now, getting back to our volunteers: While each palliative care volunteer has strengths in several areas and they are often such good sports about working with me, as well as clients and other volunteers, in areas where we were all breaking new ground. For example, the Butterfly Golf Tournament, I can always recall a pair of senior volunteers- one of whom has since died of cancer. I can see them like it was last week, sitting out somewhere down by the Red river after Hole # 4, I think, at Morris Riverview Golf course. The job for these ladies was to ask golfers to try chipping into a commode.

I must tell you, success at this feat is rare (one golfer managed it last weekend) but our volunteers regularly convince golfers to part with their dollars in hopes of attaining the bragging rights as well as a few laughs.

Another one of our projects got started right here at the Palliative fall conference. In 2003, I believe, I attended a session about Pet Therapy by Ngaire ??? Abernathy from Brandon. She described the regular visits made by members of a Brandon Dog Club to every personal care home in Brandon each month.

I, myself, come from a family that always has had 1 or two dogs around. I’ve tried to imagine a world devoid of these friendly creatures, especially if they had been part of your home life. What a simple way to put a smile on the face of our care home residents. Ngaire also described silent residents who found something to say in the presence of a dog visitor.

I also knew that in the Red River Valley area, facility directors have always been supportive of folks who wish to bring their pets to visit at our facilities. With this in mind, two or three times in the next couple of years, I organized a ‘travelling pet show’. We visited Morris Hospital, the Red River Valley Lodge and Emerson Personal Care home. One Easter weekend, I arrived to find the nurses had given me advanced billing as “Aunt Holly’s Pet Farm”. That day Betty and I showed a half dozen baby chicks to about 60 patients and residents. They held them, pet them, told us stories, and even fell asleep holding the chicks.

Finally, one day, I heard about a group that was willing to talk to us about having dogs regularly visit patients and clients and how to get ourselves organized.

In the spring of 2005, Christine Kaskiw of the St John Ambulance Therapy Dog Program came out to explain to volunteers about how to qualify for the Therapy Dog Program and thereby give us the confidence to bring our dogs into the hospital and care home facilities.

By fall 2005, we were ready to host a Test day. 8 dogs showed up from around our area to be assessed by Christine and her crew. One was a very large mastiff and another was a little ball of fluff, but they all went through their trials like troopers and earned a certificate as official “St John Ambulance Therapy” dogs.

To date, our hardest working dog in the Morris area has been a poodle named Buttons, who is scheduled for a monthly visit to the residents of the Red River Valley Lodge in Morris.

Now let me tell you a bit about Cheryl, a client Betty and I have had for almost three years now. I have some detailed background information thanks to her husband Dale.

- Cheryl was born and raised in St. James/Assiniboia in Winnipeg, with a twin sister, Janice and younger sister, Heather.

- She graduated from Silver Heights Collegiate and the University of Manitoba and was a brilliant student all throughout.

- She was an accomplished swimmer and worked many summers as a lifeguard. Cheryl dearly loved spending every weekend that she could out at Caddy Lake.

She also loved curling, right throughout university until her M.S. began to surface.

- Both Cheryl and her twin ended up with M.S., but Janice passed away less than two years after diagnosis although they both had the Chronic Progressive form of the disease

- Cheryl is the kindest, sweetest, most personable and affectionate individual you would ever have the pleasure of getting to know; Cheryl’s attitude was a stark reminder how a person’s outlook on life can play a large part in dealing with any form of illness. Cheryl co-operated and went along with everything her specialists suggested. For example: Cheryl learned hot baths were considered something that might hasten the process of her MS so she avoided them.

- Dale and Cheryl met in...

J'accompagne à domicile des gens qui choisissent de mourir dans leur cadre familial et j'offre également bénévolement, du temps dans une maison de soins palliatifs.J'adore ce que je fais et je ne changerais ce travail pour rien au monde ! Accompagner des gens en fin de vie me permet de devenir une meilleure personne. Je reçois des enseignements d'une valeur inestimable, qui me permettent de vivre davantage dans le moment présent, de prendre conscience de ce qui est important pour moi, de donner un sens à ma vie....je reviens toujours grandement énergisée de mes accompagnements.

Mon choix de vie surprend et on me pose beaucoup de questions sur le sujet, car pour bien des gens, côtoyer la mort peut sembler morbide...je suis toujours heureuse de leur partager mon vécu et de constater que mes expériences peuvent parfois arriver à remettre en question leurs perceptions négatives ou leurs préjugés sur le sujet. La mort fait partie de la vie. Faire connaissance avec elle et l'apprivoiser dans mon quotidien, me permet aussi de me préparer à ma propre mort...car elle viendra aussi un jour...Je me sens vraiment privilégiée car cela m'enrichit profondément. Je pense recevoir tout autant, sinon plus que ce que je donne...La fin de vie et la mort sont des moments d'une rare intensité, des moments sacrés, qui m'invitent nécessairement à offrir une présence de qualité, digne du respect dont chaque être humain est en droit de s'attendre et davatange encore à cette étape déterminante de leur parcours sur terre.

Je me sens honorée de faire partie des gens qui ont à coeur d'offrir des soins empreints d'humanité et de pouvoir faire une petite différence dans la vie des gens que j'ai le bonheur de croiser sur ma route. C'est bien vrai que La mort, c'est plein de vie en dedans...

Felt with the Heart

While walking the trails at Providence Farm, Duncan BC with Hike for Hospice on May 1, 2009, I felt compelled to call my friend Victoria who was embracing her final days of life. As I walked and strolled we shared the peace of the forest… dappled shady woods, new growth green meadows, abundant fragrant wild flowers and eagles soaring. Even though many miles were between us we were able to experience together the trails and sacred space of Providence Farm. We shared a quiet acceptance of what was to be, a gentle surrendering to her next journey with openness. Our hearts were filled with gratitude as we spoke of our loving and unconditional friendship and the new trail my friend would soon embark upon.

Victoria died on May 23, 2009. We will stay connected always in our loving hearts. I treasure, respect and honour her memory.

(Victoria with her great hat on the left in the photo, Barb on the right)

Barb Nugent

I work as a music therapist in in-patient palliative care and other units at a hospital in Toronto, Ontario. I recently completed a research study which looked at the role of music in facilitating relationship completion at the end-of-life. As one of the means of communicating the research results, I chose to write an artistic piece for each case study. These artistic pieces were verified by the participants before they died. Today I would like to share the piece entitled Music To Shatter the Silence. This piece was written to let Yetta's voice be heard. Music To Shatter The Silence Sadness Anxiety Denial Unrest Pain The war has had a lasting effect on my life. When I returned to live with my mother after the war, Sadness was all around us. I don’t remember anyone singing or reading stories. I knew I was hiding during the war, But even when I was a young lady, I felt like I had to keep hiding from certain people. Many days, I tried to fool myself. I would say to myself that I was an actress. I lived in a shadow of silence. I want to talk about my story And banish the idea of having to be quiet about the war. I don’t have to be silent anymore. Embrace Growth It has helped me now to think about all my feelings and forgive myself. I have very uneasy feelings about my childhood. I don’t know if I can forgive myself. I think I need to say “I Love You” to my mother and stepmother. I need to say, “I forgive myself.” Music made it easy to talk about my feelings. Some of the songs that others have written, Opened my eyes to seeing that a person is never alone. Using the songs helped me to come to new awareness of my feelings, Especially those that I had buried for so long about my childhood. Catharsis Forgiveness Love I feel better now. I can close this chapter of my life, Knowing they have heard me. The chapter is now closed. Healing Resolution I feel like I can finally let go and play. I can be a child without responsibilities. I am a child now, Without the physical strength to be able to skip around or dance to the music. Play I love playing so loudly, I just bang and bang the drum And when I am done, I feel much better, It’s that simple. Authenticity Liberty I am in a good place now. I can leave this world knowing There are good people here. I am ready now to die and travel to another. I am free. I am free. Freedom!

I have been a volunteer with hospice in Kelowna BC since November of 2007. My first experience with hospice was in 2005 when my father in law passed away at Moog and friends Hospice in Penticton. While I was visiting one day I sat and read one of the brochures provided by the hospice that explained the dying process and what to expect. In the final moments of his life I saw his wife sitting at his bedside and his mother sitting in a chair across the room. I asked his mother (Nana to us) if she wanted to move closer and hold his hand. yes she replied. Nana moved closer to her dying son and held his hand to her chest, never taking her eyes off him. I fiddled with the bed railing and finally got it lowered, then pulled a chair closer so Nana could sit down. But she wouldn't sit down, she held his and next to her breast and tears filled her eyes. Nana I said, do you want to hold him? Her words were silent as she mouthed yes, I told her it was okay, and to climb into the bed and to hold him. She was unsure, but I knew it would be okay, the brochure had said that you can talk to and hold the dying person in the same way as you normally would have. I remember Nana saying, I can't, and she didn't mean she couldn't hold him, she meant she couldn't let him go. As I helped her into bed beside her son and she held his head next to her breast I told her to just hold him and love him as he leaves this world, the same way she did when he came into it. I left the room shortly after that. My revelation into the power of hospice came a couple of hours later. Our family was gathered together and my father in law had passed away. Nana came up to me and gave me the biggest tightest hug, then looked me in the eyes and through her tears said thank you, for giving me that with my son. You made it okay. I couldn't have done it without the information the hospice had provided. Six months later when I was sitting with my own father as he was dying the only thought I had in my mind was that I wanted to make it okay for him, because I believe that as much as possible, the family and the dying need to be okay with it. If I can help just one person or family have a moment that is a little easier, more tender or beautiful then it's worth it. Volunteering with hospice has rewarded me ten fold what I have given to it, the little moments that take my breath away are what make me feel alive.

If I had to sum up in one lineWhat Hospice means to me it would beGiving people hope and light in the midst of pain and grief, even if it is a hand to hold or a cool drink of water. Because my own personal story is a very spiritual one, that I feel should be shared, I find it difficult at times in todays world of doubt, rules and political correctness,to speak from my heart to the hurting hearts of others. I do understand the guidelines and the reasons for those guidelines and I know there are many ways to show compassion. Love has no boundries. Perhaps one day we will all understand and live that concept. All things considered, I have enjoyed my work with Hospice, as it is built on a caring concept and the rewards are many. My sincere and heartfelt thanks to all. Nola Schweitzer Note- I tried to submit a photo but am a bit I-T challanged getting it attached.If you did not receive the photo, please contact me and I will send one.

I'm on the run, and a lot of other bereaved families ran with me. On Sunday May 2, we walked, hiked and hoofed it any way we could, to raise funds for a local organization that thousands of Calgary families consider an essential service in learning to live again after a life-shattering loss. I go back seven years to a November evening when life was precarious. The doorbell rang and two grief counsellors from Hospice Calgary stepped inside our home. I gathered my three kids and told them, Sarah and Joni are here to help us understand what is going to happen to Dad and how we feel about it. My husband, Andrew, then 38, had been diagnosed with metastasized melanoma. By the time we found out, the cancer had spread beyond cure and he had been told to go home and put affairs in order. We determined to see every day as gift, but we still needed help for our children. Sitting around the kitchen table, the counsellors listened to their fears. My daughter drew a picture of flowers in a garden. She pointed to a sunflower said, This is my Daddy. He is losing his petals. Six weeks later Andrew died at home. In the years following, Hospice Calgary was still there for us. A year later, when my middle son couldn't see the point in going on, a skilled counsellor helped him discover what he needed to engage with life again. My daughter joined Kid's Club, a support group for bereaved children. She also attended a summer day camp where she discovered that it was OK to have fun again, even though she had lost her father. The Canadian Hospice Palliative Care Association estimates that each death in Canada affects the immediate well-being of an average of five other people, or more than 1.25 million Canadians each year. It's not just a family's mental health that is affected. In losing a spouse, many widows I know also lose the source of their financial stability. Adapting to all of these life changes can be overwhelming. I always thought hospice was a place that cared for people at the end of life, but for the bereaved teen that doesn't turn to drugs; the grieving child who can cope while her classmates merrily make Mother's Day cards, and the widow who can keep working and not lose her income despite her grief, Hospice Calgary is a lifeline. Six years have passed since my husband died. The kids and I are doing well, largely in part to this Calgary organization that supports hurting people at a time when they need it most. That is why I was ran at the fifth annual Hike for Hospice Calgary. Judy Wark is a Calgary writer, speaker and widow known for blogging her family's journey with terminal cancer.