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Practical Insights for Busy Caregivers

The Caring Experience Project: Donna's Story


November 30, 2015, by Hannele Kivinen, Caregiver Exchange

family photo For Donna Thomson, life as a caregiver has been a long road with many obstacles along the way. When her son Nicholas was born 27 years ago, she didn’t know he had disabilities. It soon became apparent that he was having trouble sucking and swallowing, which led to dehydration. “That was the first hospitalization of many,” says Thomson. “He’s now in his life been hospitalized 76 times.”
Nicholas is largely bed-ridden. He is also tube-fed, and requires around-the-clock care. In addition to looking after Nicholas 24/7, Thomson also helps to care for her aging mother.
One thing that has been very challenging for Thomson is finding information about the supports available from existing health care services, both in hospitals and in home and community care. “There’s no clear indication of what is it that you can have,” notes Thomson. “And because it is so unclear, it’s very difficult for me to know how to meet my family’s needs.”
Thomson believes that the Ministry of Health and Long-Term Care should make information accessible and transparent by using their website to publicize the services that people are eligible to receive right away. “You would know instantly what it is that you are able to access from the province,” suggests Thomson. “That would save me and other caregivers a huge amount of time and energy.”
Another thing that Thomson has found difficult is the lack of respect for her role from health care professionals. “When I look at what I do for my family members, I do very complicated nursing care and I make all of the medical decisions for about 13 different medications that my son is on,” she notes. Even though what she does is almost professional in nature, she feels that there’s a culture in health care that diminishes the role of the family caregiver.
She has another great suggestion: it should be mandatory for all medical students to be trained in community care, so they can get a first hand look at what caregivers are doing. Says Thomson, “they can’t help caregivers unless they understand caregivers.”
Recently, Thomson was interviewed for an “Open Lines” Town Hall teleconference put on by The Caring Experience, a project that is currently being run by the Ontario Caregiver Coalition (OCC), in partnership with The Change Foundation. The Caring Experience puts the spotlight on caregivers, so they can share what they think needs to be improved in the health care system, from a caregiver’s perspective on the frontlines.
“We really want to hear directly from caregivers about their experiences so that we can gather up those stories and try to reflect back to decision-makers and health care professionals where the issues are,” explains Lisa Levin, Chair of the OCC. “We know that caregivers can offer valuable ideas.”
Are you interested in getting involved? From December to February, there will be three ways to share your story:
  • Complete mini online surveys to be sent to you by email
  • Sign up for one of nine face-to-face caregiver workshops, which will be held across the province throughout January and the first week of February
  • Participate in journey-mapping, a process which may include a variety of activities (such as phone interviews, hand written journals and/or worksheets, Q&A sessions via email and/or text message, and photo, video, or audio recording) depending on each person’s situation and preferences
Please note that space is limited for the workshops and journey-mapping sessions, so please sign up today over at The Caring Experience. We’ll be talking more about this great project next week, so stay tuned!

If you’d like to hear more about Thomson’s caregiving experience, please visit her blog. She has also written a family memoir, The Four Walls of My Freedom, which is available at all booksellers in Canada, including and