Stories of
Caregivers
Spotlight on Fabiana
Fabiana has cared for her son Gabriel since birth. He was diagnosed with cerebral palsy at 20 months old. Fabiana has struggled to coordinate support for her son and find time to focus on herself and the rest of her family.
Q&A with Fabiana

How long have you cared for your son?

I’ve cared for my son Gabriel, now 7 years old, since birth. He was born at 26 weeks and spent 5 months in the ICU at Mount Sinai Hospital. When he finally came home, he was on oxygen and breathing support for one year. At 20 months old he was diagnosed with cerebral palsy.

What tasks are you responsible for?

Taking care of Gabriel is a full-time job. I’m responsible for managing all of his appointments (in his second year of life he had 187 appointments), therapy, medication, securing an EA for him at school, funding, organizing his PSW, researching and purchasing his wheelchair, bath chair, writing device (he is verbal, but uses a writing device), and walker. Gabriel recently became an ambassador for Holland Bloorview, so I also manage his photo shoots and radio interviews.

I’m responsible for managing all of his appointments (in his second year of life he had 187 appointments).

As a caregiver, do you receive any additional support?

I receive some funding for respite care and once a month I go to a program called ‘Recess’ where volunteers watch the kids and their siblings for a brief period of time. A PSW gives him a bath for one hour a day from Monday-Friday. I’m also an active participant in an online support group that’s open to parents of kids with neurological disorders.

How do you feel your role as caregiver has impacted your life?

I always thought my life would go back to “normal” once he was discharged from the NICU. I really had to grieve the news and come to accept my son’s condition.

It’s placed a huge strain on my marriage, but we are committed to remaining a family. I couldn’t go back to work full-time for six years, but I volunteered at Mount Sinai.

Also, I was always researching and thinking about new equipment and studies. Even when Gabriel is stable, I’m still always watching out. This “alert” state has become normal, because there’s no other way, but it’s not healthy. Plus, I don’t feel that I have enough time for my eldest son or myself. There’s no time to recharge.

There’s also a great financial impact and we don’t qualify for any support (grants, etc.). For example, it would cost $100,000 to put an elevator in our house or $60,000 for an accessible minivan.

As Gabriel is in school during the day, I have returned to work full-time, and along with volunteering at Mount Sinai and with the Canadian Premature Babies Foundation, and caring for my family, I feel fulfilled.

Even when Gabriel is stable, I’m still always watching out. This “alert” state has become normal, because there’s no other way, but it’s not healthy. Plus, I don’t feel that I have enough time for my eldest son or myself. There’s no time to recharge.

What do you think are the barriers to receiving proper care? For the person you are caring for? For yourself?

The biggest barrier is the way the system is set up. Gabriel doesn’t stress me out; the system does. For example, if his wheelchair needs to be adjusted, I can’t just go to the manufacturer, I first need to see a specialist and there’s a 6 month wait list for an appointment.

Another example of the broken system is that although Gabriel is eligible to receive 8 hours a week of PSW support, it’s improperly managed and ends up taking more time or not being worth the hassle.

How do you feel your role as a caregiver should be seen?

I think healthcare professionals should acknowledge what it is to be a caregiver and better understand how many people a caregiver interacts with and how much information needs to be repeated on a regular basis.

I also experience a lot of guilt for not following all of the advice or “homework” we are assigned from each healthcare professional (ie. Occupational Therapist, Physical Therapist, etc.). But really, if I were to do all of the activities they recommend, it would require more than 24 hours a day.

Do you have a place you can turn when you feel that you need support?

I usually turn to an online support group as it’s a place where I don’t feel alone. I don’t bother confiding in other people who aren’t in a similar situation as they just can’t relate.

I also visit family in Brazil every March for two weeks. This provides a huge relief as they can help with my sons.


Do you feel that you get access to emotional support/counselling for yourself?

Not really. It’s not widely available or offered. One and a half year’s into Gabriel’s life, a naturopath asked me how I was doing. Me, not Gabriel. It was a big relief.

I usually turn to an online support group as it’s a place where I don’t feel alone. I don’t bother confiding in other people who aren’t in a similar situation as they just can’t relate.

When you look back to when you first started caring for your loved one, what would you want to know then that you know now?

That we were going to be okay. That together we have the strength to get through it. And that there is peer support available to help navigate the system. For example, I know now that Holland Bloorview has a social worker that can walk caregivers through the available resources; however, when Gabriel was first diagnosed, I had no idea and had to search out all of the various supports on my own.

WHAT’S BEING SAID

32% of caregivers have faced some form of financial hardship due to caregiving. As a #caregiver do you relate? Learn more about the caregiving experience in our Spotlight on Ontario’s Caregivers report: bit.ly/2QOu1RG #caregivers #ONhealth pic.twitter.com/UcMwayM72A