Being a caregiver for my dad who is living with the same disease I will get one day

March 1, 2024

Erin Paterson is a caregiver for her father, who lives with Huntington’s disease, and has tested positive for the Huntington’s gene as well. 

by Erin Paterson

I have a rare disease, well not quite yet, but I live with Huntington’s every day. I am gene positive for Huntington’s which means I will get the disease one day I just don’t know when the symptoms will start. That can make it hard to fit. I have this bad thing hanging over my head as I try to go about living a fulfilling life.

One of the hardest parts about living my life in limbo is witnessing my dad suffer through the same disease, the one I inherited from him. It is frustrating to watch how my dad is treated and underestimated because he has Huntington’s, especially by the medical community. I know it comes from a place of trying to help but most of the time Huntington’s is blamed for what my dad is going through when it usually has nothing to do with it.

In those moments where I am standing next to his bed in the hospital and someone makes such an assumption I don’t know where I find the strength to speak up, to correct them in a gentle way. I have always been afraid of conflict but in these situations I find a strength I didn’t know I possessed.

As a caregiver for my dad here are the things I wish people would understand:

  • Even though my dad can’t speak to much it doesn’t mean he shouldn’t have a say in his medical care. He deserves to be looked in the eye and asked a question even if I am going to be the one replying for him.
  • If you ask my dad a question you just have to pause and wait 30 – 60 seconds in order to give him time to answer. Sometimes that answer will just be one word and it will take him a tremendous amount of effort to say it.
  • Just because he needs help with some of the basic tasks of living such as getting showered and dressed, doesn’t mean he doesn’t find value and joy in his life.

Lately things have been really hard for me. I am struggling to balance being a caregiver, with being a mom, and a wife and working, and trying to maintain my own health. But there are some positive things about living life with a rare disease in it.

I feel closer to my dad now then ever before. My daughter is witnessing everything we are going through as a family and I know it is molding her into a kind and caring human being. My relationship with my husband has grown stronger as we navigate taking care of an ailing parent. And those are the things I think about when it gets hard.

Those are the things that give me hope for my own future when I start having symptoms too. Because of my dad we have a trial run to prepare for when I become sick. I know that will bring with it its own challenges but I think we will all be a little better prepared for round two. I am so grateful to my dad for the strength and grace he as shown as he battles this horrible disease.

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