The Year She Noticed the Trees – a Story of Understanding

My 84 year old mother was a casino regular until the pandemic hit. When I say regular I mean seven days a week at the Flamborough Downs penny slot machines. She reminds us often that “It’s like being in prison,” if she doesn’t get out every day. She lives in a very nice house in Waterdown with my sister and her family where she is well looked after and rarely alone.

Once COVID closed the casino doors she decided to replace her usual entertainment with car rides and she’d accompany me or my sister on our errands with the occasional longer adventure  to explore nearby towns and neighbourhoods.

And so began our journey.

My mother and I have had a somewhat difficult relationship and have never been particularly close. But here we were suddenly in close quarters confined in my nice comfy SUV with the heated seats (which she loved because she was always cold) and the dashboard that was too high for her to see over. A pillow for her to perch on solved that problem. I worried about the imagined uncomfortable silences as she isn’t much of a conversationalist but to my surprise it wasn’t uncomfortable at all.

One of the first things she said on our inaugural car ride to Paris (after 3 months of isolation ) was “can you believe the trees! They are so big. I’ve never seen them grow this much in this amount of time. I’m sure this hasn’t happened  before. And they are so green! Except for the dead ones. Why don’t THEY remove the dead ones!”  I named the maples and pines and willows as we drove. She does not see the reason to keep the dead ones. I’m tempted to remind her about mother nature and the value of “dead things” but I’m pretty sure she will clam up and I don’t want her to stop talking. After all, I have NEVER heard her comment on her natural surroundings EVER. She is a city girl from the north end of Hamilton who only notices houses and sidewalks. After her mother died when she was 9 she was left with 7 brothers and a father who treated her more like a worker than a daughter. The life she had did not include the country or trees.   

I admit I had hopes that the time we were spending together would allow us to become closer in some way. Spending three or four hours with her in a car was bound to create opportunities to talk about experiences and feelings.  “This was going to be a good experiment” I thought to myself. I wanted to ask her about my father and why he just disappeared when I was 11 or why she let him take my baby brother away or perhaps she would talk about her relationship with my stepfather and how difficult it was for her to leave him after so many years of his crappy behaviour.

A window seemed to begin to open for her. She even rolled down the car window on our drives allowing the wind to ruffle her hair. She began marveling at the clouds, too, wondering how there could be so many of them in different shapes and sizes as she shielded her eyes from the startling sunshine.

Soon she stopped asking why people would want to live in the country and seemed to admire  the rolling, expansive farmer’s fields. She wondered about the corn and asked me, “where the heck does all that corn go.” And she kept on talking about the trees . Together we’d point out the various colours that were appearing on the trees as fall began to peek out at us.

Once we drove to Fergus to visit a cemetery that I knew had an interesting history but she wouldn’t get out of the car because it was “too cold” that day. She has always been cold. She talks often of the Quebec coal heater that was used to heat their house when she was a kid and how the window in the boys room never quite closed so the snow would accumulate on the sill in their room. She has always been described by myself and others as a cold person –  and maybe it’s because she spent her childhood in a cold house with a cold father and no mother.

Our conversations stayed superficial. I’d ask her how her night or morning was and she would tell me how many times she had to get up to visit the bathroom or tell me about an obituary she had read about someone she once knew. Talking of the mundane stuff of the day was nice. I was enjoying it.  

I am finally able to understand why my mother struggles to connect with others. No one took the time to connect with her when she was young. Once she lost her mother opportunities for closeness with others became few and far between. I have always wished for more from her but have finally grown up enough to be able to feel empathy for her. After being raised with shame and a profound lack of family love her path took her through 3 marriages, 3 divorces and a lot of time alone.

She is afraid of death now as it looms just around the corner. She is disappointed about her life and often says, “I never thought I’d end up like this.” I’m not sure what she means by that. Does she mean she never thought she’d be this frail or that she didn’t think she’d be without a mate? She can’t explain her feelings about it.  

Her life experiences have taught me to embrace all life has to offer and to nurture myself first and foremost.

I didn’t always feel cared for or safe growing up with her as a mother but I know I do want HER to feel safe now.

What matters most to ME is that she is noticing the trees.

Written by: Sue Phillips, End of Life Doula Support Services

A Glimpse of Steve

Steven received his prognosis of terminal cancer three months ago.  The tumor in his brain was growing rapidly and there was little anyone could do.  Steven and his family were shocked and very scared of what lay ahead for them.  The family contacted VON Oxford to engage a Hospice Volunteer Visitor.  As a Hospice Volunteer, I provide practical and emotional support for Steven and his family, as well as caregiver relief.

Steven was an active senior enjoying his retirement after 42 years as a dedicated employee.  His time was spent doing all the things he had dreamed of for so long, finishing his many woodworking projects, working in the yard and garden with his wife of 38 years, traveling, enjoying the activities at the senior centre and spending time with his three children and eight grandchildren, the pride and joy of his life.

Stephen and I spent many hours talking about his life. The reminders of a very full and rich life surrounded us.  Every picture and memento had a heart warming story attached to it and he joyfully shared these with me.  We talked about the last and very important part of his journey and what was beyond this life. We laughed and joked as Stephen painted the ideal picture of heaven complete with hockey games on a larger-than-life TV screen. 

We discussed at length his concerns about dying.  He said he was not afraid to die but was unprepared to leave his wife and family, as he knew it would cause them such pain and heartache.  I assured him that his family, whom I had gotten to know intimately, would not be left alone in their grief, as Hospice would continue to provide emotional support for them.

Steven died peacefully in the home he had lived in all his married life, encircled in the warmth, comfort and support of his family and a few very close friends, of which I felt privileged to be included.  Steven reaffirmed in me the importance of living life to the final moment, for he died as he had lived, with peace in his heart.

A Letter from Mom

A woman in the prime of her life, living as she had hoped and planned in a nice house, in a nice neighborhood with her two children and a wonderful husband and their pet dog.  Unfortunately, she was diagnosed with a very aggressive cancer.  She received surgery and treatment with little success.  Her doctor said there was nothing more to do than to go home and be with her family.  I met her at this time.  She told me about how sad she felt that she would not see her children grow up and that they would not know her.

She agreed to meet a volunteer.  A match was made and during the first visits she talked with the volunteer about how sad she was that she would not be with her children to watch them grow up – to look after them. They would not know her – her dreams for them – what she was like.  As the volunteer and this young woman talked, they developed a plan.  The first part was a shopping trip and very carefully they chose birthday cards for each of her children for each of their birthdays until they were 20.  Then the real work began – this Mom began to write for her life.  She wrote a message for each of her children, for each of their birthdays.  A special note about what she was thinking about them.  When she was no longer strong enough to write, the volunteer became her scribe.

When all of the writing was done, each card was carefully sealed in an envelope and put away.  One week later, she died.  As a result of the volunteer connection, a legacy was left.  Her children would know their mother – what she was like – what she hoped for them – how much she loved them.

Volunteers are invited into a sacred space and share such amazing care and concern with some very special people.  I feel honoured to be in the company of such amazing people.

United in Love

It is the patient’s journey and they must be allowed and encouraged to choreograph each step. 

“Mr. X” was very frail and suffering with the end stages of cancer.  His voice was barely audible and we leaned close to hear every word whenever he tried to speak.  One day, his nurse called Hospice with his request.  He wanted to marry his companion of 25 years.  He was much too frail to obtain the legal licence required for an ordained minister to perform the ceremony, but was adamant about wanting to get married before he died.  As a final solution, it was agreed that I would create a ceremony to “unite them in love.”  The time was set for 9:30 a.m. the following day.

Around 7:00 p.m., the evening before the ceremony, I received a call from his nurse.  “Well,” she said, “it is all set up for tomorrow morning.  I had a heck of a time making him understand that it is tomorrow morning though.  He kept on saying, “9:30 tonight” and I kept on telling him, “No, it is 9:30 tomorrow morning.”  “Oh dear,” I said.  “He is telling us he is going to die before morning.  We have to do it tonight.” 

His nurse agreed to stay at his home and I gathered the notes I had written up and met her there. We gathered around his bed and I read the ceremony while he and his partner held hands.  When his turn came, he said, “I do” so loudly that none of us had any trouble hearing him.

The next day his nurse called me to say he had died at 10:30 in the morning.  To this day, I believe he knew he was going to die and I am so grateful that we heard him and responded.

Near North Palliative Care Network, North Bay

One Final Goodbye…

She arrived hesitantly at the door and rang the doorbell, not really knowing why she had come.  Her husband’s memory drew her to this special place where he had breathed his last breath.  Feeling anxious, she wasn’t sure what she planned to do.  Thankfully a familiar face became visible through the glass door.  Someone greeted her by name.  She had not seen the personal support worker for a year to the day.  And she remembered her name. She fumbled with her words.  “Do you really remember who I am?” she asked.  “Of course, I remember.  You are Alan’s wife.”

The widow needed to connect with someone who had been present at her husband’s death.  After a year of grief she needed to mark this first anniversary with a pilgrimage back to the hospice.  She would love to be able to sit in the room where she and Alan had said good-bye forever.  Could it be possible that the room would be empty?

The staff invited her to sit and have tea in Alan’s room.  She sat down in the inviting lazy boy, reminiscing back to the day that she and Alan had arrived.  The blue room looked out on a natural wooded area through French doors.  Birds fluttered around the birdfeeder.  She felt calmed by this familiar space.  She remembered its peaceful atmosphere and replayed in her mind all that had transpired in those last few hours and minutes. There was a change in his breathing.  His colour changed. She was in a state of shock. Good-byes.  Words of love.  Silence.   The staff had been so attentive and so kind.  Her family had been present.  The tea reminded her of the nurturing she had received that difficult day.  She would drink it today.

An annual golf tournament.  That was what she was going to do for this amazing place.  The hospice was funded through the community and she could help financially.  Alan would approve.  She was sure that his golf buddies would help her as would her mother and children.   She would try to get some publicity for the tournament through the newspaper.  After all, what a story she could tell. Alan had been at the hospice for only a few hours after his transfer from hospital.  The nurse who had come to the hospital from the hospice was worried about the transfer.  After Alan’s quick death she now understood why.  Imagine being remembered by name by the staff after a year!  She was sure that it wasn’t coincidence that Alan’s room was empty.  A flood of tears and waves of grief engulfed her as she replayed those last breaths and those last minutes.  She felt no embarrassment.  The staff at the hospice actually anticipated her grief and suffering.  Few words were exchanged.  There was just a profound understanding of her need and of her grief.  Now she was at peace with her one final goodbye…

The Journey of Grief

“We had one of those storybook marriages, that’s why it hurts so much, …” says Anne of her late husband, Mac, who died of a rare form of cancer two years ago.  Anne, a nurse practitioner in Belleville, Ontario was married to her best friend for 39 years. Mac died just shortly before the couple’s 40th wedding anniversary.

Anne is a strong advocate of Hospice Quinte, who can’t say enough about Client and Volunteer Coordinator who helped her care for Mac when he was so ill. “I never would have survived without Hospice,” said Anne.

“The fact that you have someone who can come every day and understands death and dying makes what you have to do easier; they are compassionate; they’re trustworthy; and they’ve had enough training that you feel you can go and sit down, you can even have bath!” remarked Anne.

During a visit to the hospice, Anne commented that the hardest part about being the partner of a dying person is that you are so tired. As the primary caregiver you are up providing care at all hours. The practical help of a volunteer kept Anne going until the next day allowing her to continue with the day to day aspects of living.

Although Anne is devastated by her loss she manages to cope day-by-day using work and school to help her along. She credits the bereavement group at Hospice Quinte, for making the biggest difference in her new life.

“That group was the turning point for me.  There were people who were just as angry as I was, who hurt just as much as I did. I found that I could sit down and talk to these women and they understood the way that nobody else could,” said Anne during our conversation.

We know that other bereavement group members second these sentiments, often relaying to us how grateful they are for the opportunity to bond and share with their peers.

As Anne summed up so eloquently, “Hospice helps you to die but they also help you live…”

Through the Eyes of a Wife

No one could believe she hadn’t planned her husband’s funeral.  It seemed natural that a funeral would be on one’s to do list when a loved one is faced with incapacitating cancer.  But after days and months enduring the foreign and tumultuous journey of a life threatening illness, Max and Lucy had not even discussed the ‘after.’  I think she felt planning it would be a betrayal of his optimism; his effort to squeeze every last drop out of life.  She may have thought it a waste of precious numbered moments on a task that would have its requisite time when the task of staying alive was complete.

It is not in a hospice volunteer’s job description to be involved in funeral planning.  I had assumed most volunteers were notified of the death and made a polite appearance at the service.  Max was my first palliative hospice client and not much about my relationship with him had gone as anticipated.  I think I expected my clients to be elderly ladies with cats, weathered teapots and photos of their grandchildren.  I learned, however, that life threatening illnesses don’t wait until adoring offspring are prepared to carry on your name.

Aggressive cancer doesn’t stand around until your memories are carefully catalogued in albums and metastases don’t care if you’ve seen all you want to in life and are prepared to bow out gracefully.  Max was certainly not ready; he had not finished creating memories and his family was not yet settled.  Max still had a greenhouse to build, a barn to tear down, farm equipment to sell and was barely on speaking terms with his daughter.

Every illness has stages.  It seems that as soon as one stage becomes ‘normal’ the rug is pulled out to reveal a different but equally disorienting stage.  Max’s final stage came oddly enough after the last item of his to do list was crossed off in his trusty notebook.  As much as any death can be predicted by an illness, I have found that every death seems somehow sudden.  Here one moment then suddenly, mysteriously gone.  The business of death, the paperwork, the arrangements are all difficult in the wake of this slap on the face.   Being confronted by this business was proving difficult for Max’s wife, Lucy because she had never been involved in planning a funeral before.  It was then that I found myself continuing to provide support for Lucy. 

Lucy was at a loss.  Money was an issue.  There was not a lot of extra money for an extravagant funeral.  And even if the money had been there, the question of how to best reflect the vibrant spirit of Max and have a healing and meaningful ceremony remained.

Lucy tried to look at caskets and as difficult as this task was the “sticker-shock” made it worse.  Lucy ordered a plain wooden casket and had it delivered to her home.  Plain wood would not be a true reflection of Max, but Lucy had a plan.  That evening she invited friends to gather at her home.  She brought out paint, brushes, wine and music and directed them to decorate the unadorned pine.  At first there was awkwardness as no one was sure exactly what to do.  Some thought it quite strange or disrespectful to paint a casket.  As people began to consider the spirit and memories of Max—and they drank some wine—they realized it was a perfect idea.  Soon, the ideas, memories and impressions of Max’s life, dreams and relationships began to colour his casket.  By the end of the evening the box came alive, completely covered in painted images reflecting a big life that had touched many people.  The funeral home staff was surprised at the vibrant kaleidoscope of colour and the deeply personal tribute that returned to the home the next day. 

This set the tone for the remainder of Max’s send off.  In a refurbished historical church, Max was remembered in a festival of live music, commentary and friendly reminiscence by a small gathering of his family and friends. The spontaneous and original ideas of how to remember Max, and the fellowship Lucy found in her journey to put it all together could never have been pre-planned. Life is a journey that awaits us…

One Last Wish

Dave had been in the Palliative Care Unit at Northumberland Hills Hospital for more than four weeks this time, his third time in the unit. Nurses asked Joan, “How is he hanging on?” Joan pondered on it and came up with a reason she wouldn’t put past her stubborn husband. “He probably wants to go fishing one more time!”

So began the preparations for Dave’s final trip to a favourite fishing spot. Joan decided to take Dave to the “Ganny” [the Ganaraska River] but had trouble working out the details. She tried to organize the loan of a wheelchair van but that didn’t work out. She also didn’t know how she’d get Dave in and out of a vehicle, and other “what-ifs” contributed to her anxiety.

Joan had met Hospice Northumberland’s Client Care Coordinator, Libby, a couple of times when visiting Dave in the palliative care unit so she called Hospice to ask for help. Libby quickly got the trip organized and recruited a recently graduated volunteer to come along.

When they finally reached Sylvan Glen, Dave was helped out of the van and into his wheelchair. There he was greeted by Joan’s parents and her sister, and his old fishing pal, Joe. Fishing had been an important part of Dave’s life. He began fly-fishing with Joan’s father who was involved with the International Fly Fishing Federation.

On a beautiful May day, Dave was very happy to go fishing for the last time. He and Joe talked about old times and favourite fishing spots. Everybody present that day will never forget it. This was the first experience for the new Hospice volunteer. He said it was “an amazing experience knowing you were a part of helping somebody with their last wish.” Sylvan Glen has become a special place to this volunteer, where he now goes when he needs time alone.

Dave died 12 days later. In October at the second Canadian National Fly Fishing Championship in Quebec, Joan presented the “Top Rod” award to the fisher who took first place. The trophy was made with donations in Dave’s name and it is named after him – a fitting legacy to a man who loved fishing.

Let’s talk about myths.

There are countless misconceptions about what hospice palliative care is and how it works. Below are common myths that persist today.

MYTH: I can only get palliative care in hospital

FACT: Palliative care services are offered in many places, including hospitals, hospices and in your own home.

MYTH: Palliative care manages pain through the use of addictive narcotics.

FACT: Palliative care is whole person care that provides psychosocial and spiritual care along with pain and symptom management.

MYTH: Having hospice and palliative care means you will die soon.

FACT: Hospice and palliative care is not just for the end of life. It is a holistic approach that includes care-giver support, spiritual care, bereavement and much more.

MYTH: Hospice and palliative care is just for people with cancer.

FACT: All those who are diagnosed with a chronic life-limiting illness can benefit from hospice and palliative care.

MYTH: Hospices are generally just for old people.

FACT: Hospice and palliative care is provided to people of all ages – from infancy to adulthood.

MYTH: Everyone has access to hospice and palliative care.

FACT: Though every person has the right to hospice and palliative care, there are many around the world who do not have access to hospice and palliative care.

Source: Achieving Universal Coverage of Palliative Care: Dispelling the myths October 12, 2013

For more information on myths, check out Five Common Myths about Hospice Care.

Through the Eyes of a Son

~ Hospice Georgina ~

When you live in England and receive a call saying your mother in Canada is facing cancer surgery and chemotherapy, it’s a crisis.

Recently Harry had such a call and although he came to Georgina to be with his mother, it was clear that a two week trip wasn’t going to be enough. Luckily, Harry called Hospice Georgina to see what could be done to help his mother. Our experienced staff met with the whole family, including Harry’s sister, Candace, who lives and works nearby. The question that pressed everyone was how can we get through this crisis in the best way?

Hospice staff were able to name a number of agencies that could help and described the services each offers. Harry and Candace listed what they and their mother needed. Soon they were able to put together a plan and Hospice made the necessary referrals to other agencies. Some friends and neighbours had expressed concern but didn’t know what to do. They also became part of the team to cover some of the hours when Mrs. H. would be alone. Hospice matched a volunteer to the client and together they made up a support team to care for Mrs. H.

Struggling with cancer is never an easy experience but Mrs. H. had a support team that would help her, whatever the outcome. Harry would hear from his mom every other day about what was happening and the team would bring caring and reassurance to Mrs. H.

While outsiders sometimes think of this kind of work as depressing, there is a sense of doing something worthwhile that is inspiring at many levels. Those who help develop a sense of satisfaction and confidence in their skills.

Mrs. H. has had the surgery and has begun treatment, Hospice will journey with her to help her have the best quality of life that is possible. We work with each person at a time, in a way that reflects their needs.

It is how every one of us would like to be treated in life’s crises.

– Testimonial by Harry, Hospice Georgina