Many of the effects of being a caregiver have been good overall

“A friend is someone who knows all about you and still loves you.” — Elbert Hubbard

Huntington’s disease has affected several generations of my family, taking the lives of my dad, granddad, and great-grandmother. I tested negative for the disease in the summer of 2023.

In the years preceding my dad’s diagnosis, I sensed a need in him to be closer to me. He appeared to have lost confidence, was no longer employed, needed support with everyday tasks, and seemed lonely. Previously, he had always been happy in his own company and confident at work and while doing household tasks. He never would’ve imposed before, as he wanted me to live my life and spend time with my own family and friends. He was selfless before the disease took over.

As his condition progressed, I began to neglect my friends more. I was forced to forsake the time I used to spend with them, helping and supporting my dad instead. Tasks I used to do during the day got pushed into the evening hours as my time became increasingly crunched. The time I used to spend relaxing before bed with my family disappeared. My bedtimes got later and later, and I was mentally and physically exhausted.

Eventually, as a family, we had to accept that it was too much to handle. We received extra help from a personal assistant and a care agency, which took some of the pressure off me.

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Why I’m a better person now

I’d like to think I am a better person and a better friend as a result of being a caregiver. I think I’m more empathetic and aware of other people’s needs. I also think I’m a better listener, which has helped me consider situations from other points of view.

I’d also like to think I’m more patient as a result of my caregiving role and have become more relaxed about life in general. I’m in less of a rush to get everything done in a day, and I accept that I’m only human and can only do so much.

I’m more observant than I used to be and don’t assume that every symptom is a result of Huntington’s anymore. I’m more sensitive and have a better understanding of life, too.

I’ve been able to provide advice and support to friends who are going through similar situations with their own family. Common issues such as power of attorney and benefit applications have cropped up, and I’ve been able to help with them because I’ve been through it before with my dad.

I’ve used the skills I gained from caring for my dad to care for others with similar conditions. Occasionally, I can identify and head off problems as they arise.

I’ve also been able to pass on a common tip I learned while caregiving, which has helped people. The tip is to be aware of the signs of a urinary tract infection, which sometimes can be mistaken for disease progression.

My friends have been amazing throughout my family’s journey with Huntington’s disease and continue to support me today. They’ve been there to listen and have offered practical and emotional support. I honestly don’t know what I would’ve done without them. They’ve been so understanding of me neglecting them and canceling our meetups because I was with Dad or just too exhausted to go. They could’ve given up on me and stopped calling, but they didn’t.

I believe the qualities needed to be a good caregiver are closely aligned with those needed to be a good friend. I think the overall impact of being a caregiver on my friendships has been positive. Despite the guilt I have of neglecting my friends over the last 15 years to devote time to my caregiver role, I believe the care I gave my dad and the time I spent with him were absolutely the right place for me to be.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.