A bomb exploded in Ed and Anne’s life: terminal cancer. Without treatment, Ed could expect to live three months. The active couple and their close-knit family were devastated. Typically strong and independent, Ed retreated into hopelessness and fear. Anne, her world collapsing, followed him.
Their daughter, Liz, felt helpless to provide the extensive support her parents needed. When she told her doctor about her dad’s diagnosis, she hit a jackpot of information. Her family doctor spent a few days each week working in a hospice. Liz learned that with early palliative care, people with a terminal illness live longer and stay at home longer than otherwise. Her doctor was sure that Ed could remain comfortable for the rest of his life, first at home and then in a hospice.
Ed and Anne were not ready to hear anything about hospice or palliative care. The stigma of those words was too strong. “We are not at that stage yet.” To Ed and Anne, palliative care and hospice meant imminent death.
Ed chose chemotherapy, not to cure but to shrink the tumours to decrease his discomfort. He started right before Christmas and launched into weeks of physical and emotional misery. After weeks of white-knuckling through life, Ed and Anne asked their oncologist about palliative care. With those magic words the world opened up to them.
They were assigned a palliative oncologist who understood that treatment must be dictated by how Ed wanted to live his life. Ed was in complete control. Every week, Ed and Anne received comfort, support, reassurance and laughs when their palliative care nurse visited them at home. The nurse sent an occupational therapist to the house to ensure Ed could stay there comfortably and safely, with a few modifications. Soon, a palliative reflexologist was visiting Ed at home, providing welcome relief for the tingling numbness Ed felt in his feet due to chemotherapy. The entire family, including Ed and Anne’s kids and grandchildren could access counselling. In a move that was completely out of character for this independent, no-nonsense couple, Ed and Anne started attending a weekly support group. Even more surprising: they made friends and had fun! Life had shifted from mere survival back into a new type of normal.
With the support of his palliative care team, Ed kept making and meeting his goals. He travelled to enjoy one last Thanksgiving at the family cabin. He sat at the table for another Christmas dinner. He rang in the New Year, 15 months after his diagnosis.
The decision to leave home and enter hospice was gut-wrenching but comforting for both Ed and his family. Ed’s highest priority was his family’s well-being and he knew they would be supported in hospice. His family wanted Ed to be comfortable and safe. Warm care permeated the family’s six days at the hospice, until Ed’s peaceful death.
Ed lived a good life to the end because he was brave enough to speak those scary words: palliative care. And he said them to a doctor who knew what to do.
Why does AHPCA exist?
AHPCA supports professionals and volunteers to help them provide good quality hospice palliative care. How do we do that?
AHPCA helps people access good quality hospice palliative care services. How do we do that?
AHPCA raises public and political awareness of hospice palliative care. How?
Roadshows have educated over 3,000 Albertans on hospice palliative care topics.
The You’re Not Alone – Grief Connection program connects grieving Albertans with trained volunteers for friendly support by telephone.
The Living Every Season program provides safe, confidential support in a social setting for adults living with a life-limiting illness.
The annual Imagine Conference unites grassroots hospice groups, who usually work in isolation, to learn together and network.
The Jean Stone Scholarship provides up to $500 for at least two palliative care volunteers to further their education in the field.
The Dr. Donna Wilson Caregiver Award provides a recognition of $500 to an unpaid caregiver who contributes the independence and dignity of the person they help, through their compassion and perseverance.
AHPCA’s Resource Directory helps palliative patients and caregivers find the help they need.
The AHPCA Events Calendar tells people about upcoming palliative events.
There are several ways you can support the Alberta Hospice Palliative Care Association.
Donate. AHPCA needs financial support for our programs and educational conferences through donations.
Join. Become an AHPCA member to become better informed about hospice palliative care issues.