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.