Posted on

With Gratitude

Open Window

“Ross”…This was the simple subject line of a message I received late this morning from a colleague. I knew what it would say before I clicked on it.

Ross had died.

I did not really know Ross, but hearing of his death hit me harder than I expected. You see, Ross was the first palliative care client that I met after I started working at Hospice Peterborough. He and his partner generously welcomed me into their home, during one of the most intense and painful times imaginable, to help me begin to understand the client work my colleagues do, and why that work is so important. I am forever grateful.

I had no idea what to expect as we arrived that July day. It was sunny and hot outside, and inside Ross lay on a medical bed in a small makeshift room on the main floor, because stairs were no longer an option. His weakening body was rail thin, but it was his eyes I remember the most. There were moments when they sparkled with mischief, and when he spoke about his death, I understood why my colleague called him a philosopher. Strangely, I find myself smiling at this memory. What a mixed bag of emotions loss brings.

Hearing Ross speak about his pain and his end-of-life wishes was difficult, but I am grateful to have been in the room. His partner sat at the foot of his bed as my colleague checked in with him about how he was feeling (it wasn’t a good day), and about his end-of-life plans. She spoke to me about their life together and shared photos of their travels. Seeing a healthy Ross smile up at me from the photographs in my hands, as his partner began to talk about the details of his funeral nearly brought me to tears. And all the while, from my seat by the window, I watched as my colleague leaned forward to catch Ross’s words of wisdom and his wishes. I have my personal reasons and experiences for believing so strongly in access to palliative and hospice care, but that brief visit to Ross’s home, snapped all the pieces into place for me.

I knew that Ross was going to die when I met him, but what I was grateful to read in my colleague’s email was that he was able to die at home in peaceful surroundings…the way that he wanted to.

Please note that names have been changed to protect privacy.

Posted on

Sacred Space

By: David Kennedy, Supportive Care Counsellor, based on an anonymous client

I never thought it could happen this way. Of course, that is what we all say afterwards. Funny thing about life and dying – you have to be doing one or the other but, while doing the one, we forget that the other option can show up anytime.

I came to the group reluctantly – that is the easy word – I really came kicking and screaming inside. Yet there was something that pulled me in – curiosity and the idea that perhaps I would find here what I knew I could never find elsewhere. So I came. This is my story.

My child was the center of my life. I called him my miracle child. He was a miracle in that I was told I would never have children and that pain, in and of itself, weighed on me constantly. So, when I found myself pregnant, it was as if the universe had smiled on me and life was a joy. I embraced every day. Then, it was like the switch went off – you know the brilliance of light that is suddenly gone leaving only a blanket of darkness that causes disorientation, until you get a sense of your surroundings. Only this darkness doesn’t allow you to find that sense. There is constant disorientation, and an inability to find equilibrium.

He died. There is no way to make it any softer and still true. He died, and when he died a piece of me, a huge piece, in fact most of me, died too. How is it possible for a 21-year-old miracle boy to die? Doesn’t the fact that he made it into this life, when no one thought it possible, mean that he should be able to live a long time to enjoy that miracle? I guess not. We were too busy living to consider the other option. How he died is not important to this story – it is the fact that he died.

So, here I am sitting in a room at Hospice with 18 other people and I can tell just by the look on their faces that I didn’t have to try to pretend, or try to find words to explain. They all understand this place of sadness, disbelief and senselessness. I was told I didn’t have to say anything if I didn’t want to, and believe me – I didn’t want to. Partly, because it was too painful to open the story to others, and partly because I knew that the dam holding back the emotional flood was pretty frail!

A strange thing happens. I do speak, in fact I speak much more than I imagined I could.

I speak of my son because they wanted to hear his name and what he was like.

I speak because I knew that those listening were listening without judging my ability to “get over this.”

I speak because pain released is so much better than pain withheld.

It is exhausting, but exhausting in a good way. The tears I feared, are tears shared. My search for answers about how to do this are not met with a list of ten things to do, but rather an openness and an invitation to “not knowing” supported by the hope that I will find my way.

As our meeting ends we light a candle and go around the room while each person says the name of their child that died, and then we sit in that air, silently, some crying softly, all of us stilled in the depths of our being. I open my eyes and look at this room and decide it is sacred space.

These walls hold hundreds of stories. Stories spoken in pain, but they are stories that carry the depths of love not found elsewhere. These walls hold these stories gently, graciously, with strength of compassion, and they wait for our next meeting, when again they will witness the love and sadness of a miracle child, born, loved, and lost, and the mom who struggles every day.

This is why I love Hospice. It isn’t because I am given a sheet of things to do, but rather I am offered a space, a sacred space, to be with others who have lost their miracle child. A space where together we live, honour and remember our child.

No matter where Hospice is, or what it looks like, my hope is that there will always be a space to share stories of sadness and love, and a place to find the gift of those who will witness these with us.

** A story offered anonymously to say thank you for all of the support, work and effort to give Peterborough City and County a place for this.

Posted on

Hospice Songs for the Soul

I have had the privilege of being a Hospice Singer since the group began, serendipitously, more than nine years ago. We modeled ourselves after the Hallowell Singers, a group of singers associated with a hospice in Vermont.

I would like to share a few words of Kathy Leo, one of the founders of that group:

“Bedside singing calls for the singer to be present, to be intuitive and deeply respectful of another’s process, and to be a quiet witness of death. We are not performing. We do not expect an audience. We see this singing as a service – for the person dying before us, for the families saying good-bye to a loved one, for the caregivers working quietly and constantly in the background, for ourselves and the expansion and evolution of our own spirits and for the culture as a way to begin to shift the lens we view death through.

Our repertoire includes songs from many cultures and traditions. We have songs that address the journey of death and songs that honour the joy of living. We have songs that bring joy and spirit and songs that calm and comfort.”

Each time we sing we experience and learn and grow in this practice. Here is a snapshot of what a sing might sound and look like:

We sang in several different rooms at PRHC – each one a unique and enlightening experience, to say the least. It is often so hard to know how our songs are received when there appears to be no immediate response. And yet… and yet there are nonverbal ways that indicate our songs have found a place to rest with someone when their eyes light up or there is a slight movement of a hand or a foot.

Initially, Laura seemed more interested in getting her bed adjusted than our singing. But when we started to sing, her eyes were completely locked with Cecilia’s and she thanked us at the end, saying our singing was lovely.

Glenn was restless and confused and had his TV on and told us we could sing what we wanted. It was hard to know what songs would reach him. But as we sang, he closed his eyes and the singing seemed to have a calming effect on him.

We visited a room with two Hospice clients. Ruth asked if we knew any spirituals and so we began with “Peace Like A River.” With each verse, Ruth would beam a smile at us, nod and give a thumbs up, responding to the words by saying “so true.” Dale bowed her head as we sang and just listened. They enthused about our harmonies, as did one of the young hospital workers who was bringing up a cart of bedding when we came out into the hall. He was a lover of music in general and loved what he heard.

One of the last rooms we sang in had two young people sitting near the bed of their grandmother who was propped up, but non responsive. As we quietly sang “Angels Hovering Round,” the two young people reached for each other’s hand and leaned into each other for support. At the end, the young man said, “she would have loved that.” We also sang “Edelweiss” and as we hummed our way out into the hall a third grandchild greeted us with a warm, teary smile, cellphone in hand. She had held the phone into the room as we sang so her mother (and the daughter of the patient) could hear us. Apparently “Edelweiss” was a favourite in the family. The young woman said, “I hope my grandma heard it.” I personally believe she did.

If any of you are interested in this practice, I highly recommend reading Kathy Leo’s book, called “On the Breath of Song: the Practice of Beside Singing for the Dying.” There are copies available in the Hospice Peterborough Library. Or call Paula Greenwood at (705) 742-4042 ext. 225 to find out how you might join the Hospice Singers.

Posted on


Last fall, the first Hospice Peterborough DIEalouges were hosted at Lett Architect Studio. These sessions were about opening up a conversation about death and dying to the community. During one of these sessions a question was posed to the attendees: If you could write a note now to the people who will be responsible for your non-medical care at the end of your life, what things would you want them to know?

It was one of four questions that participants in the DIEalogues could choose from and respond to. After spending some time reflecting personally on this question, there was discussion with others. Then following a period of time, people were offered the chance to talk with the whole group.

One woman spoke about this incredible moment of revelation – that she had never thought about what she wanted her dying to look like if she had the choice. More than that, she realized that even if she knew, her family and friends did not know so how could they help to make sure the important pieces are there? This ignited a spark that resonated with the other 40 participants and the discussion was rich.

Three days later I met up with this person and she couldn’t wait to show me the list she had created for her two daughters; she was sending this list to them along with an updated copy of her will.

Here is what she wrote to her daughters, Amy and Grace*:

The things I would like you to know if I can’t ask for them as I come to my dying.

Please play country music when appropriate. I like Victoria Banks, Tim McGraw, Georgia Florida Line, Zac Brown Band, Deric Ruttan and many others.

Please make sure I am as comfortable as possible: warm, pain freeand with mouth care.

Please read to me if I can’t read. I love books of any kind, but particularly murder mysteries, or forensic pathology stories such as those written by J.D. Robb, Faye Kellerman and Kathy Reichs.

If appropriate, I would like to participate in complementary therapies such as massage and therapeutic touch, such as Reiki. Meditation is also very important to me.

I have such an artistic family! If possible, I would love to have Nanna’s seascape, any of Poppa H’s sunset paintings and if there is room for it, my bronze Emperor Penguin Mother and Chick on the carrera marble base. This last piece represents the struggles I had with a person during a period of time and it was created out of much love.

If Caroline* is still in my life I would like to be able to see her. Please make sure that someone will look after her for the rest of her life.
Please don’t prolong my life if there is poor quality of life and a grave prognosis. Please also give me your permission to let go of life, otherwise I may be hanging on in order to look after you. I was born a caregiver, and will be a caregiver to the end, so please reassure me that you will be alright after I pass.

Please place Harley and Oscar’s urn into the niche with mine.

— Love Mom

We have no guarantee about what the end of our life will look like, or whether we will have an opportunity to have some control over it. That should not prevent us from spending time considering this and informing important people in our life of our request.

I believe this allows for the possibility of being in the kind of space that will be most helpful to our dying. It also gives us pause to reflect upon things that are important to us now in life.

Give it a try!

* all names have been changed to protect identity

Posted on

The Strange Events of Grief

It was just one of those nights. He had to get out of the house. Oh, he understood that his adult children were just worried about him and that is why they doted on his every move. “Come on Dad – you have to eat – have more food… Dad, now you have to get things done while we are home with you… Let’s get things ready for Christmas while we can help” and the list went on and on. It was not that he did not appreciate their help, the truth is that if they were not there he probably would not eat at all or even think about Christmas. It was just that they kept him so busy that he did not have time to sit with the memory and grief of his wife of 43 years who died only three weeks ago.

So while they were busy with sorting her clothes in the closet – he slipped on his coat and boots, went outside, and set off for the woods behind the house. The air was cold and crisp and the skiff of snow that had fallen earlier that day crunched with every step he took. He took some deep breaths and the cold air filled his lungs. He had made his way along a path so well known to him that he did not even need to look down.

Marg and he had spent hours walking these trails in the woods behind their house, and with each step, the intensity and clarity of those times together grew until he sank to his knees unable to go any further.

It was never supposed to be like this. He had never imagined that she would go first and they often joked about him having to go first because he would not know anything about how to look after himself. But they didn’t get to choose and now here he was – it seemed like a nightmare.

portrait of a senior adult with gray beard in winter forest

He stayed on his knees for what seemed a very long time, his mind bouncing between the memories of her hand in his, her smile and smell, and the horror of those last days in the hospital where she looked so frail and weak. He could not stand it anymore, he cried out “Marg how could you leave me here like this, how am I ever going to do anything again.” The words spilt out and seemed to echo and reverberate through the trees.

Suddenly he was aware of a light in the trees above him. Not a bright spot of light, but a glow, like a star had decided to leave the sky and come close to the earth. He felt a warmth that he presumed was from the light but it seemed to embrace him outside and in. His anxious fear suddenly grew still and subsided and he felt a deep peace in his heart. He could not prove Marg was there, but he did not need to because he knew she was.

The quiet of the forest became even more so, he had never been in a place where he felt such peace. He could not have spoken even if he wanted to, and for the next few moments, he was still and never wanted to leave this place. It was as if she was speaking to him without voice, the words simply were there for him… “Jack I am safe, and so are you. Grief and sadness is the gift we get because we have loved so deeply. You will find your way – because I will always be there with you. You will talk about me and brag about our life together and it will be such a legacy to who we were and are.”

Then the light grew dim. The air took on its chill and the forest sounds came alive again. Jack stumbled to his feet, amazed at what had just happened. He looked around trying to understand these moments. Suddenly his eye caught something hanging in the tree branch just ahead of him. It sparkled and as he reached out to grasp it he realized it was a necklace, not just any necklace but the one that he had given her on their wedding day. Now he felt the chills run up and down his spine and the hair at the base of his neck stand up because Marg had been buried with this necklace on her.

How was he going to explain this to anyone? Then he heard or rather felt her voice deep within his heart, “you don’t have to explain to anyone, just live in what you know is true.”

Jack felt a huge weight lift. Oh, the sadness was still there, he missed holding Marg physically, but now came the deep assurance that she was with him no matter what happened and that gave him peace. His walk back to the house was different because he was different, hope now sat with grief in a new way that changed everything.

Posted on

The Struggle to Hold On

By: David Kennedy, Supportive Care Counsellor, Hospice Peterborough 

Impermanence – everything changes. It is amazing how this simple truth gets so much resistance even when we know it is true. The difficulty comes at times in life when what is changing is perceived to be a threat to our stability, enjoyment, comfort or future.

The shocking news of a life-threatening illness is one of those times when we struggle against change the most and perhaps rightly so. After all, the changes that we see involve the control of our health, our time, our very life. It is no wonder that the language used to describe life at this point is the language of war and struggle.

Yet in the struggle to hold onto what we cannot hold onto, we create a web of suffering that becomes the very air we breathe. The brave fight against disease is acknowledged at death and held up as a valiant fight – even though it was not winnable. How do we embrace a reality of impermanence without simply “giving up” and shutting down on life?

If we can embrace impermanence well, while we experience the losses of what we cannot hold onto, we will have the opportunity to experience the new gifts that are being offered to us.

So how do we embrace change and loss without a stance of giving up and giving in? I believe this begins with facing and acknowledging, in an honouring way, the changes that are happening. Perhaps this begins with a grateful realization that our body has done us well for many years. The changes happening do not negate our gratitude for the years that it has served us and fought for us against infection, injury and aging. It is not that the physical body is simply giving up, but rather it is following a path of impermanence and it will continue to do the best it can with the reality of the disease. Impermanence means that instead of going out and shovelling dirt in the yard, we go and lie down and have a nap. Our gratitude to our body for showing us our journey is often set aside in feelings of failure or fear that we are not able to do what we used to do. What if it is possible to allow our body to help us with the reality of change as healthy, not failure?

Image of elderly man holding a young boy.

Secondly, I believe we can do this better by holding onto things lightly rather than tightly. We have become a society that finds our meaning and worth and value in what we do, or what we have or by what other people say about us. This demands that we hold onto things and doing and reputation in ways that do not allow for impermanence. Instead we hand over control of our self to these things which were never meant to stay the same. Illness and dying immediately confront these strongholds we have built and when they cannot withstand what is happening we are left feeling meaningless, valueless and without a sense of who we are. What if we held onto these things like doing, having and perception by others more loosely? What would it look like if we found meaning and value and presence in more than these things so that when change comes in these areas we are not void of meaningful life?

Finally, it is important to be fully in the moment of the life we are in without the constant need to measure value and worth by what we used to do, and the haunting fear of what we won’t be able to do in the future. It is the ability to embrace where we find ourselves now and to put all of our effort into being thankful and active in ways that are possible now. Today I can find the strength to go and sit in the garden and to observe and wonder. It is not the feelings of failure that I can’t dig the garden like I did last year, or the anxiety of whether I will be able to get out into the garden next month – it is the action and gratitude and wonder of being in the garden today and finding my soul being touched by the wonders of this moment.

What possible gifts may come our way when we can embrace impermanence well? I have watched people find wonder in the simple activity of watching their child eat a sandwich with great enjoyment. I have listened to a person describe in vivid detail the time they watched a hummingbird feed and tell me that they had never stopped to watch this even though the feeder had been there year after year. It is the gift of loving people in the moment for who they are. The expressing of that love spontaneously without having to filter through the lens of how we used to do it. It is the gift of mystery, not certainty, of not needing to know or be right.

Each day is a reminder of impermanence, nature is its ambassador and disease is the unknown guide to open the world to the way it has always been.

Posted on

Awakening To Moments

By: David Kennedy, Supportive Care Counsellor, Hospice Peterborough

It was a very intense moment. The air was literally heavy with grief. She had just finished telling me the story of the sudden unexpected death of the love of her life. As she had poured out their life together, there was a deep sadness that pervaded all other emotions. Even those moments we laughed at a memory were wrapped in a shroud of sadness and disbelief. When we examined the things that reflected his life she was awakened to their significance beyond the physical, and spoke of the beauty that these things brought out in him – things like love, meaning, joy and gratitude.

Our conversation wandered leisurely, albeit with difficulty, through the many things that people take for granted at the time, but later realize are clothed with such powerful emotions. We miss what we take for granted and it is not the problem of putting off what we can do tomorrow, it is the mistake of living as if we always will have a tomorrow.

As we came to the end of our journey for that day, I asked her if she missed his voice. She paused, unsure if it was okay to tell me. Then she told me that she has his cell phone and it is still active, and every now and then she will call and listen to his voice and leave a message. Then with deep sadness in her eyes she added. “But he never returns my call.”

Posted on

In the Family Room

Composite story written by John Mowry based on his experiences working with families at end-of-life.

My sister, brother and I sat in silence in the “family room”. The doctor had explained that Dad had suffered a life-threatening stroke and decisions needed to be made as to how Dad would want to be treated. “Would he want to be treated aggressively or would he want to be kept comfortable?” My sister looked at me and said, “How would we know what Dad would want? Isn’t the doctor supposed know what is best for a patient?” At which point my brother jumps in with, “Why are we even being asked about this? Dad would definitely want everything possible done. This is crazy!” “The doctor asked if Dad has an ‘Advance Care Plan’. I don’t even know what that is”.

The words of my siblings fade as my mind shifted to thoughts of Mom and Dad. Mom had died 5 years ago. At that time, I simply got a call from Dad informing me of her death. Dad is 92 years old. He had been physically active – golf in the summer months, curling through the winter and acted as the secretary of the local historical society until he was 90. The last two years however have not been kind to Dad. His eyesight and hearing, both failing resulted in him becoming increasingly isolated from the activities that had made his life so full. The last two years he had stopped golfing and curling. He had lost his confidence. At one point a year ago, he even mentioned that he was simply waiting until “it is time to be with your mother again.”

I found myself wishing that somehow, as a family, we could have had some conversation with Dad. Maybe Dad saying that he was simply waiting until it is time to be with Mom again was his way of trying to open up this conversation. If only we had not been afraid to have this discussion. If only.

April 16 has been declared National Advance Care Planning Day in Canada. Advance Care Planning is about having conversations with the person, or people who will make decisions for you if you are unable to speak for yourself. By reflecting on your own values, beliefs and wishes and having open, thoughtful discussions with your loved ones who will act as your Substitute Decision Maker, you will help them if they find themselves in a situation where they are being asked by a doctor or other health care professional about difficult decisions that may need to be made in such situations as the case of my 92 year old Dad.

The link below is a booklet that provides information on how to think about and approach these important conversations. Please take a few moments to look through this material. Imagine the peace of mind knowing that you are able to provide voice to a loved one.

Posted on

Sacred Time and the Gift of Singing

By: Meredith Hill, Hospice Peterborough Volunteer

The Borland family lives across the road and we’ve only known them in a way that’s slightly more than acquaintances. However, in the last four years we have watched as Margaret, the matriarch in her eighties, struggled with and succumbed to Alzheimer’s. Though her children and their families had moved into the house for support, even their whole tribe was no longer able to provide for her and keep her safe and the decision was made for her to go to Fairhaven for care.

I was surprised when her husband, Wimpy, came to me, weeping that this had been the worst day of his life. After that opening, there were several conversations with different family members as they struggled with her decline and when she was transferred to hospital and then the palliative ward. The vigil began and we observed the gathering of the clan and the all night and all day comings and goings.

When we received the call that Margaret had died, I crossed the street and was welcomed into one of those sacred places where people were open in their mourning and storytelling …and I was privileged to just be there with them. One of the stories they told was the visit of the Bedside Singers. They knew of the connection I have with Hospice and asked me to tell everyone there how wonderful their visit had been.

The Borland’s have been key members of Saint James United Church since they were married there 65 years ago. Christian hymns are their language of sacred time. Margaret was no longer speaking when the Singers came to the ward that evening but as they sang, her family watched in awe as she began to mouth the words along with them. And that fully churched family joined in the singing in what became for them a tremendously meaningful time.

By the next day, as Margaret was clearly weaker, the fully gathered family went back to that experience with the Singers and began themselves to sing the hymns and songs that were part of their lifeblood. They’re not entirely sure at what point in the singing Margaret actually breathed her last breath, but they know that their gift of presence and music were important parts of her good death. They wanted Hospice to know the gift of those singers being there had meant so much to Margaret, who could not say thank you. The whole family very warmly extends their thanks.