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.

Through the Eyes of a Husband

~ Hospice Vaughan Testimonial ~

Tammy and I fell in love while writing songs for a three-song demo she was recording at a friend’s studio. It didn’t take long to know my life was going to be blessed with her by my side.

Most people aren’t fortunate enough to find their true love, and I find that extremely sad.  Others are genuinely blessed in that love has indeed touched their lives.  I am one of the fortunate and my story begins with that very fact.  Tammy was, is and always will be the love of my life…my true soul mate. 

During our three-year relationship, we focused on our love of music but more importantly on “us.” We were completely fulfilled, simply by being in each other’s presence, and were married July 12th, 2003.  At our wedding reception, I arranged to have the piano rolled out on to the dance floor so that Tammy and I could sing “our song.” We wrote the song together; Tammy sang her verse and I sang mine.  We sang the chorus together.  We spent four glorious months as husband and wife, but the happiness I had found was to be short-lived.  My heart and spirit were broken on a cold November day when she was taken from me in a tragic car accident.  This beautiful, vibrant, loving woman was gone. 

The days that followed were spent in shock and confusion.  I was offered counseling by a crisis response centre, but was not yet ready to accept their help.  I was feeling extremely vulnerable and didn’t want to share that with anyone.  I learned about Hospice through a family friend who is a volunteer there.  Because of the trust I have in this friend, it re-assured me that this was the counseling I needed, and that brought me comfort.  In fact, my parents had attended several fundraising events for Hospice Vaughan in the past; not knowing that one day I, myself would need their services.  I called the number that was given to me and made an appointment to see a grief counselor at Hospice Vaughan.  My experience at Hospice is difficult to put into words.  After my first session, I realized that it was very necessary and important for me to continue coming.  It allowed me to speak about everything I was feeling…the good, the bad, and the uncomfortable.  I felt safe in their care and all who volunteer and work there provided the same comfort.

The grief counselor asked me if I would be interested in joining a grief support group.  I felt open to sharing my pain as well as experiencing other people’s pain, so I agreed.  The program gave me a great sense of acceptance and understanding.  It was made up of other people who had suffered loss as well.   We all connected and shared our feelings and experiences.  Every session was an experience of both laughter and sorrow.  We shared our innermost feelings while comforting one another.   Hospice Vaughan is here for people who have lost a loved one.  The services are available free of charge.  It continues to be a constant source of support for me….even to this day. 

I have some advice for those of you reading this article:  Please don’t take your lives for granted.  Death does not discriminate.  It can take anyone at anytime.  Tammy and I loved and lived passionately during our time together.  I know we will never really be apart.  This is what keeps me with her and her with me.  Every time I sit at the piano and sing our wedding song, I sing my verse…and she sings her verse from heaven.  I love her too much to just trick myself into believing I have to let her go.   She will always be a part of me.

   – Written by: Adrien, Hospice Vaughan

Through the Eyes of a Hospice Volunteer

~ Huron Hospice Testimonial ~

It is difficult to understand what it feels like when parents lose a child.

This little boy started life out like any other child and everything seemed perfect, however, his days were numbered. The parents began to notice physical difficulties that Ben was having and specific milestones that he did not seem to be meeting.  Ben’s parents became concerned and after much testing and lengthy waiting periods the final diagnosis was Battens Disease.

Battens Disease is a rare progressive degenerative disease which causes blindness, seizures, loss of motor skills and is always fatal. Not only did his parents know their child would die but they were watching his death happen in stages before their eyes.  There were a lot of community support services involved but when Huron Hospice services were offered the parents were forever changed.

As the volunteer coordinator I first visited with Ben’s mom when Ben was 3 years old.  I discussed the services we could provide and how Hospice would be able to support her and her husband. There was virtually no other family member to support this couple.  

Throughout the remainder of the Ben’s illness a hospice volunteer was able to be a part of the team that helped this family cope with an extremely unhappy situation. The hospice volunteer became a friend, especially for Mom. The volunteer had young children herself and even though this was a tough position for her it helped her identify with what Ben’s mother was going through.  

Ben died a few months after his eighth birthday.    When I visited the funeral home after the death of this child it was hard to believe that he had undergone such suffering.  He looked at peace and all the signs of struggle were gone.  The struggle will continue for the parents for years to come and the hospice volunteer will continue to be there to support them. 

Life is different for all of us and death is also different for everyone but Hospice Palliative Care Volunteers help to make a difference during the dying process.

– Anonymous Testimonial from Huron Hospice