National Caregiver Day is the first Tuesday of April. Unanimously adopted by the federal members of parliament; this day formally recognizes caregivers across Canada. This year, Carers Canada and its partners is recognizing the many caregivers who are providing care for someone with a life-limiting illness. Read the caregiver experiences throughout their caring journey and join us on April 4 for a day of discussion and reflection with caregivers, health care providers and researchers.
Caregivers experience many emotions when caring for somebody who has been diagnosed with a life-limiting illness. Dealing with the unknown, new situations and new people often feels like an emotional roller coaster – from receiving a diagnosis; engaging in serious illness conversations; navigating the health system during active treatment; providing palliative and supportive care; and dealing with grief.
Knowing what my sister wanted was important. Everyone must have these conversations. As much as we didn’t want to talk about it, we needed to.
We knew what we wanted, but we didn’t know how to make everyone else know.
We needed the information about what to expect, what our choices could be, what was available sooner than later, earlier rather than halfway through or at the end.
They listened to me. They understood – I knew what my husband wanted. If they didn’t understand, they asked. We all agreed.
The plan was well thought out and in theory was a good plan. The execution and delivery on the plan was what fell short.
I don’t know how many people get to say they’ve been on palliative care twice, but I can, and knowing the team is good at what they do, lets me know I will be well taken care of.
There are only a few emotions I haven’t felt during caregiving. It was as if every time I saw him, I had lost more of him causing me to be in a constant state of grief.
After my husband’s death, no one seemed the least bit interested in the fact that I still had some very dangerous prescription medications in my home.
Caregiving taught me compassion – for him and for myself. This whole journey has been very intense.
Join us for a day of stimulating conversation, as we look at innovative approaches to engaging patients and caregivers in early and ongoing conversations, ways to embed the caregiver and patient experience in continuous learning and program development and strategies to help caregivers cope with grief and loss. (Registration for the sessions is complimentary).
Education and information, as well as consistent evaluation and research, are all important to supporting caregivers throughout their caring journey. Health care providers participate in palliative care continuing education initiatives, and lead or participate in the evaluation of palliative care services, including the person’s and their designated family or caregiver’s experiences. This session will showcase the importance of education and programs that are based on patients’ and caregivers’ values, providers expertise and best available evidence.
Facilitator: Jennifer Campagnolo, Engagement Lead, Canadian Home Care Association
Guest speakers:
Sabrina Lessard,
Institutional Researcher
Centre for Research and Expertise in Social Gerontology, CREGÉS CIUSSS-CODIM
Sharon Anderson,
Research Coordinator Family Medicine
Faculty of Medicine and Dentistry, University of Alberta
Grief is a very normal and unavoidable part of the caregiver’s journey. Each caregiver’s experience and response to grief is unique, and it doesn’t only begin when their loved one’s life ends. This session explores the needs of grieving caregivers and how caregivers receive hope, comfort and support in ways that meet the challenges of caregiving. This conversation will bring together the expertise of caregivers, research and innovative technologies in a discussion about grief and bereavement.
Facilitator: Jennifer Campagnolo, Engagement Lead, Canadian Home Care Association
Discussion Moderator:
Liv Mendelsohn, Executive Director,
Canadian Centre for Caregiving Excellence
Guest panelists:
Christopher Klinger
Researcher
National Initiative for the Care of the Elderly (NICE)
Pam Orzeck
Assistant Professor
School of Social Work, McGill University
Zelda Freitas
Adjunct Professor
School of Social Work, McGill University
Colleen Breen,
Bereaved caregiver to both her parents
For many caregivers, their role caring for a loved family member or friend is a new path filled with questions, fears, and doubts. Talking to the caregiver(s) is an important opportunity to bring forward their needs and provide the reassurance, answers and supports required to help them care, comfort, and stand by their loved one. Experts in Serious Illness Conversations (SIC) and Advanced Care Planning (ACP) will respond to the experiences and perspectives of caregivers about the care conversations they wished had happened and the conversations which changed their caregiving experience for the better.
Facilitator: Jennifer Campagnolo, Engagement Lead, Canadian Home Care Association
Guest panelists:
Della Roberts,
Special Projects Manager
BC Center for Palliative Care, Adjunct Professor University of Victoria School of Nursing
Laurel Gillespie
Chief Executive Office
Canadian Hospice Palliative Care Association, former Director of Advance Care Planning in Canada
Ron Boleno
Caregiver to his father with dementia