A shared problem, not a caregiver problem

By Pierre Lachaine, Manager, Strategic Communications, The Change Foundation

In 2018, The Change Foundation worked closely with caregiver Carole Ann Alloway on The Caregiver Wishlist, a workshop and video that illustrates the advantages of engaging patients and family caregivers in the healthcare system, as well as small things that healthcare providers can do to improve the caregiver’s, and ultimately the patient’s, experience.

This year, Carole Ann expanded her wishlist idea with a new video, the first of three to be done in partnership with The Ontario Caregiver Organization, called Caring for the Mental Health of Caregivers Wishlist.

We spoke with Carole Ann about her experience working with the Ontario Caregiver Organization, and her thoughts about seeing her wishlist idea spread across the province.

Graphic for the Mental Health Caregiver Wishlisht

How did you get involved with the Ontario Caregiver Organization to create these new Wishlist videos?

Earlier this year I was contacted by the Ontario Caregiver Organization. Apparently, they had seen the Caregiver Wishlist video on The Change Foundation website and wanted to continue to build on the theme, but this time on the topic of mental health as it relates to caregiving. There are three videos in total: caregivers concerned about their own mental health, caregivers looking after children with mental health issues and caregivers caring for adults with mental health issues.

What was it like to see your vision of a caregiver Wishlist take on a life of its own?

It gives me goosebumps! To think I wrote that Wishlist at the lowest time of my caregiving days and have it mean so much to so many people is humbling and rewarding.

What did you take away from sitting through the workshop on Caregiver mental health?

All caregivers go through loneliness and isolation at some point. You feel that no one understands how difficult and challenging, but rewarding, this job is. You can feel invisible, unrecognized and taken for granted.

Every time I participate in events with other caregivers, I see empathy and understanding in their words and their faces. We’ve all faced these challenges and felt like we were drowning in self-doubt and worry. That’s why I think these videos are especially helpful because it validates that other caregivers are feeling the same way. A bonus of the videos is that they also provide clues for healthcare professionals and the public on how to prevent burnout in caregivers. Each caregiver at the end is asked for one wish that would make their job easier.

How did these workshops change your perspective as a caregiver?

I’m not sure it changed my perspective, but instead reinforced my belief that while the nature of patients’ injuries or illnesses are different, the themes that emerge from caregivers are the same. We want to be heard, recognized and respected for our knowledge and lived experience with the patient. We want to be supported and educated on how best to perform our duties, so the patient achieves their best health outcome. We should be an equal member of the healthcare team.

What do you hope these new Wishlist videos accomplish?

I hope all four of the Wishlist videos are distributed far and wide. I hope the audience – caregivers, healthcare professionals, general public, news media – can learn and spread the word. It takes a village to help a patient – it shouldn’t just be on the shoulders of the caregiver.

How could others take the Wishlist idea and run with it?

Oh gosh, where to start! I would like to see hospitals showing them to all staff as part of their professional training programs, caregiver support groups could show them and then add to the Wishlist, news media could take a topic and write articles on what caregiving is like, why it can become a burden and how others can help.

This isn’t a caregiver problem, it’s a shared problem to be solved.

 

WHAT’S BEING SAID

Where do #caregivers go for information and supports? We gained insights from our survey with 800 caregivers for the Spotlight on Ontario's Caregivers however we wanted to hear from our Caregiver Advisory Panel members as well. Check out what they said: bit.ly/2KJpOOm pic.twitter.com/WJG3ehZI0X