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.
Recognizing the important role of caregivers
The Honourable Carla Qualtrough
Minister of Employment, Workforce Development and Disability Inclusion
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.
Over 250 individuals were involved in a day of stimulating conversations exploring ways to ensure caregivers’ experiences inform educational programs; sharing strategies to help caregivers cope with grief and loss; and learning how to engage patients and caregivers in early and ongoing conversations.
Panel Discussion 1:
Valuing the Voice of Caregivers and Patients
Education and information, as well as consistent evaluation and research, are all important to supporting caregivers throughout their caring journey. This session showcases the importance of education and programs that are based on patients’ and caregivers’ values, providers expertise and best available evidence. Watch video
Panel Discussion 2:
Grief from the First Step
Grief is a very normal and unavoidable part of the caregiver’s journey. Each caregiver’s experience and response to grief is unique. The session explores the needs of grieving caregivers and how caregivers receive hope, comfort and support in ways that meet the challenges of caregiving. Watch video
Panel Discussion 3:
Conversations throughout the Journey
For many caregivers, their role caring for a loved family member or friend is a new path filled with questions, fears, and doubts. This discussion has experts in Serious Illness Conversations (SIC) and Advanced Care Planning (ACP) responding 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. Watch video
