Learning to Live with the Circle of Life and Death
May 10, 2022
By Betty-Ann Rutledge
Volunteers, Outreach & Training Community
Hospice Program & Friendly Visiting
In June 2018, 32-year-old Novelette Munroe came to SCHC for grief support following multiple deaths in her life. She accessed various services including one-to-one and group peer/mutual support. Novelette was able to gain perspective, validation and affirmation of her experiences, and cultivate strength and hope from hearing the stories of others who have “been there”.
Novelette’s Journey with HPC
When we first met Novelette, she shared with us that she was living with the life-limiting illness, Epidermolysis Bullosa (EB). Novelette had been active in the EB community and met many people around the world living with this unique condition. She had also recently lost her best friends, Jessica and Jamie, who were like sisters to her. Losing these beloved friends, along with so many others, was what initially brought Novelette to seek grief support at SCHC and motivated her to volunteer.
Novelette was recently told that her condition has worsened, and she was referred to a palliative care doctor. Options for sustaining life with this debilitating disease are limited. Novelette has seen people she loves go through painful surgeries and treatments to try and prolong life and has made the decision for her own life to focus on the quality of life, not quantity – one of the underlying values of Hospice Palliative Care (HPC). After several conversations and careful consideration, Novelette has now become one of our Hospice Palliative Care clients.
The Circle of Care
Novelette is being followed by one of our RN Palliative Navigators, Tasher and receiving support from our Spiritual Care Coordinator, Diane. The duo has been assisting Novelette and her family with making advance care plans – including decisions about end-of-life care and funeral preparations. Novelette’s mother has been her lifelong caregiver, and she does not want the burden of these difficult decisions to be left to her mother when Novelette dies. Linda, a hospice home visiting volunteer, has also been matched with Novelette. Linda’s experience journeying with many people to the end of life offers comfort and open and honest conversation opportunities to Novelette as she navigates this journey. Novelette is a strong advocate for herself and her care needs and continues to inspire all of us.
While receiving HPC services, Novelette remains an active member of our volunteer team. She provides telephone support to bereavement care clients and assisted with our first virtual volunteer training: Peer Bereavement Support in times of COVID-19.
“Losing my friends was like losing my compasses. I had no direction to head towards and no means of getting there. But finding SCHC changed that. I found meaning in my sorrow. I found usefulness in my pain by becoming a Peer Bereavement Volunteer. Suddenly, my pain meant empathy for others. A brand of usefulness that was more for me than it was others. The power in that usefulness keeps me going by giving me something to live for. I now wear my grief as a badge of honour because I belong to a human club that means love as much as it means sorrow. The people I have worked with here have made me feel this way and I am thankful to have them in my corner.”
Novelette, 2020 (Quotation and Story Shared with Permission)
Right Care. Right Time. Right Place.
Registered and allied health specialists with expert knowledge in Hospice Palliative Care, along with professionally screened and educated volunteers, work with people to ensure that they are able to live fully, safely and confidently in the setting of their choice. HPC addresses all the domains of care: physical/medical, emotional, practical, psycho-social, and spiritual for the person living with the illness, caregiver support to family of choice and includes ongoing grief and bereavement support.
For more information about the suite of services offered through our Hospice Palliative Care team, please contact 416-847-4111 or visit our website www.schcontario.ca .