Erin Paterson

I didn’t know Huntington’s disease ran in my father’s side of the family until I was in my early 30s. At the time, we didn’t know if my father had the gene, but I decided to get tested anyways. Shortly after it was confirmed that I carried the gene, my dad also tested positive.

I fell into a really deep depression after finding out and it took me a good 10 years to accept it. As my dad’s primary caregiver, I have a closer relationship with him than I ever have in my entire life but it can also be really difficult, especially with the added complexity of knowing that my husband and daughter will have to care for me in the same way later.

Sometimes I have to drop everything in my life. When my dad was hospitalized during the pandemic, I would drive two hours up north on a Tuesday morning and stay till Saturday morning and then come home to Toronto and spend a few days with my kid, and then do the same thing all over again. Right now, things are running smoothly, but I could get a call at any moment saying my dad fell or has been rushed to the hospital.

For me, advocacy is about supporting the Huntington’s community, but it is also specifically about being a voice for my dad who can no longer speak. Before appointments, I think about all the things he might want to talk about, and I ask him questions so he can tell me what matters to him. It can take a minute or two for him to respond, but he always answers by nodding yes or no. And when we are at appointments, I make sure that the staff are including him in the conversation as well. Part of my role is making sure others respect his right to be part of decisions about his life and care.

I wish there was a way to empower caregivers so they are able to get the information they need as care partners. I am my dad’s caregiver and I have a power of attorney for his personal care, but it is still very challenging to get the information that I need. Once, my dad got sent home from the hospital with a catheter without any guidance or instructions. I made 30 phone calls on one weekend and when I finally got a hold of the doctor, he told me he couldn’t talk to me because my dad was of sound mind. That moment captured so much of what is broken. I have been encouraged to declare him incompetent so that I can make decisions for him, but that’s not what is best for either of us. What we need is a system that can respect his capacity include him in decisions while also recognizing the role I play in helping him access safe and appropriate care. More than anything, I want my dad to be okay and to get the support he needs without forcing us into choices that take away his dignity.

Knowing that I’m going to get Huntington’s disease in the future while caring for my father is so hard but it also gives me hope, because I know whenever we go to visit my dad, I’m teaching my daughter empathy and how I want to be cared for.