Finding Our Balance

June 11, 2018

We were told early intervention is key. This is why we started having Maclain participate in physiotherapy as soon as he came home from the NICU.

Navigating the world of physiotherapy is complex. It is never as easy as going to the first appointment and determining what works. Every person, every child is different and what works for one does not always work for another. We have to try several approaches and many therapists before finding the right one because there is no magic pill. Sometimes an approach works and sometimes it does not. When it starts to feel like we finally found our rhythm, it is time to try something new. What is the latest, the greatest, and the most effective? As a caregiver, it can be easy to start feeling isolated and alone, and overwhelmed by all the options available.

Physiotherapy is very time consuming and the cost is even more than we ever imagined. We have to pay for the appointments, the travel to various clinics in search of the right therapist and then return there several times each week. Contrary to popular belief, there isn’t an abundance of funding available to assist with the costs. In actuality, there is very little. When an average PT appointment is about $120.00 for 50 minutes, the insurance benefits disappear quickly.

Life quickly becomes shuffling from one clinic to the next. We leave the physiotherapist’s office every few days with our list of tasks to be completed by the next appointment. Knowing all too well that not completing the list of at home tasks makes the treatment less effective but also knowing there are not enough hours in the day to do everything.

I often find myself staring blankly, shaking my head in agreement at all of the therapists and their various recommendations for my son. It’s a relief when the treatments nicely complement each other and I can see the correlation between appointments and my son’s health. Then every so often we get advice that contradicts everything we’ve been focusing on. And often the disappointment that comes when you don’t see the gains, or goals go unmet. It can be heartbreaking as a caregiver. If Maclain doesn’t make improvements it weighs on my conscious. The guilt of not having done everything I should have overcomes me. If only there were enough hours in the day to get it all done. I know now that I am not alone. I am not the only one who wishes for more time.

It’s constantly trying to find the right answer, but you can’t quite catch your balance as you fall.

We have been going to physiotherapy for several years now and I still find it difficult. I share my story, so others know they are not alone on their journey. May is Physiotherapy Month, so I hope sharing my experience as a paediatric caregiver for my son will open the dialogue for others.

We are here to help each other along the way. Ask questions. Share answers. Find support.

Brenda Agnew

Caregiver and Advocate