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

Through my Eyes

I came here thinking that I was giving, but I ended up receiving.

For three years I have been serving in the hospice world. I wasn’t sure where life would take me next but I was compelled to give back. My time, my support and my experiences. Most of us all have experienced loss, whether we were impacted directly or know someone who has lost someone, it is inevitable. I’ve experienced loss directly and it compelled me to volunteer at my local hospice.

There is a large misconception that hospices are extremely sad. In truth, there is far more joy and peace in a hospice than I have experienced anywhere else. I guess when your reality changes and your days become numbered you realize how important it is to value and cherish every moment left. I think we should all face life with that perspective. That every second it bares, holds value and although we don’t know what lays ahead for our lives we do know that it can be taken from us whenever it decides.

I started volunteering in a bereavement group for children at my local hospice. Yes, a hospice serves all ages, even those who are not at their end of life. Grief and death are sisters and it affects not only the individual but those around them. Some children lost a parent, some lost a sibling but in each case there was pain behind their story. Each child responded differently to the activities I led and group discussions took a lot of time for the children to feel comfortable to share. By the end of sessions, those children taught me that death can appear at any age and we will all be affected to some extent but it doesn’t mean that we can not look back at our memories and smile at the good times. I thought I was giving to these children, but I ended up receiving so much love and wisdom from them.

Through the Eyes of a Caregiver

Being a caregiver isn’t easy – but you don’t truly understand how difficult it is until you’ve experienced it firsthand.

When you’re 19 and the youngest sibling of four, nothing can really prepare you for when you find out that your mother has been diagnosed with terminal cancer. Transitioning from the role of care receiver as a daughter, to a care giver for my mother was a challenging and difficult experience. Especially since my family had very little knowledge of what hospice palliative care meant, or that it even existed.

The summer during my mother’s illness was a great learning curve for my family as we had to learn what it meant to be a caregiver, but also execute those lessons at the same time, while understanding and having to accept what was happening to my mother. We were very fortunate to receive massive amounts of support from family and friends when needed, such as cooked food, emotional and social support, as well as respite care. Although my mother spent weeks at a time in the hospital during her final months, we were lucky enough to have her spend tons of time at home as well when her condition would be stable enough to allow it. She did eventually pass away at the hospital, but she was surrounded by at least 40 close family members – we will always treasure those final moments with her and having the opportunity to be by her side during her final breaths.

I had not been so well versed in hospice palliative care during my mother’s diagnosis and end of life journey, but after she had passed, I began to volunteer with a local hospice. I spent time helping with their children’s program to support children who were in the grieving/bereavement process. I was also an in-home volunteer and would be assigned to an individual who was in their palliative care journey and had less than a year to live. I would visit them in their home for 4 hours every week to provide social, emotional, mental and spiritual support, as well as respite care for their primary caregiver(s). Although this is a very difficult volunteer position to take on, I was very passionate about it. As I mentioned earlier, my family was blessed enough to have tons of family and friends readily available and accessible to help us during our tough time, but I recognize that not everyone is lucky enough to have that much support. I highly encourage individuals who are caregivers to reach out for support and ask for help when needed as you never know what kind of resources are out there.

HPCO has created a set of caregiver support modules that are very informative and easy to read to help support. These educational modules are designed to further strengthen the capacity of informal caregivers who help their family member or friend remain at home at end-of-life. There are up to 19 topics available ranging from physical care, to social and emotional care, spiritual care, managing conflict, navigating family dynamics, etc. Each module is available in both English and French, and there is a First Nations Caregiver Portal.  

Visit http://www.caregiversupport.hpco.ca/ to access our Caregiver Support Portal.