When our son Nicholas was two, he had an operation to insert a feeding tube in his tummy. It was a tough decision made a little easier by the fact that our son's cerebral palsy made sucking, chewing and swallowing so difficult for him that his growth slowed to an alarming rate. On discharge day, I received "training" on how to operate the new tube and pump. Stressed and exhausted, I nodded my head and did my best to appear like a competent mother. By the time we got home, I couldn't remember a thing.
"This course has really helped me understand a lot more about the caregiver rules and having to take time for yourself as well. So I thank you and this school for offering this course for free. I found it very helpful and it also gave me some time to myself to do something I have been wanting to do and that's learn more about the health side of things."
- Charity
Our course participants were in different stages of their caregiving journeys. We heard from people who had just started to become more involved in care, to people who had been providing care for decades or more. Please find shared below a sampling of the sentiments and opinions. These stories highlight the need for a flexible approach to caregiver education, and the various demands that caregivers face in their roles.
- "I've referred at least 4 people...I've shared resources...so congratulations for offering something that is much needed in the community"
- “I particularly liked that I could access it when I had time to. That was a big bonus for me, and being free is also helpful too. I found it exceptional. I found it very useful and very helpful.”
- “The material was very well organized... It lent itself well to doing things independently and online which is what I was looking for.”
- “...it built my confidence because when your loved one becomes ill, it's very overwhelming...This kind of calmed me down and said, 'Yeah, I can do this. I can handle this’.”
- “...it was kind of refreshing to get the perspective that there's lots of people out there dealing with this...It helped me keep everything in perspective.”
- “...the advance care directive... I had really never heard of before and so I took steps to put that in place after the course.”
- “The resource list at the very end is exhaustive...so complete and valuable...the fact that it was so full, I found that reassuring. Even though I’m in healthcare, I only found out about services through word-of-mouth, speaking to this person who went through the same thing or something similar. Navigating the system is difficult, but having that list at the end was reassuring that there are supports out there and I’ll l certainly be using it.”
- “...there was a section around the health challenges, the mental challenges, and the social system challenges of a person, and my a-ha moment was around social isolation. I know I can provide good physical support. I know the house is safe. I know they’re getting to their appointments. But the part I didn’t realize was they’re in their home and they’re not leaving their home and they’re not interacting with the people who they used to before. What it’s going to spur me to do is look more at new day programs or clubs…”
- AND about the Infection Prevention and Control course: "I took the Infection Prevention and Control for Caregivers and Families course and I absolutely loved it! It shows you how quickly infections can spread as well as how easy it is to break the chain."
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