Learning how to actually be helpful to my wife with Huntington’s
Sometimes my attempts to assist add to her burden instead of easing it
As a caregiver to my wife, Jill, who is gene-positive for Huntington’s disease, I’ve learned that helping isn’t always as straightforward as it seems.
Recently, as I watched her face scrunch up in frustration while she looked at her to-do list, I reminded her that she could ask for help. But when she needed me to do some dusting, cleaning, and moving some boxes from one part of the home to another, a problem arose. She found my follow-up questions overwhelming.
“Carlos, you ask too many questions,” she said.
Her words hit home, making me realize that my attempts to assist were adding to her burden rather than easing it.
Jill explained that my help doesn’t have to be perfect; it just needs to reduce her feelings of being overwhelmed by clutter. I realized that I had overlooked the essence of what she needed: to help in a way that was genuinely helpful to her.
Because she has Huntington’s, everyday tasks can feel massive. My role as a caregiver is not just to take tasks off her plate, but to do so in a way that doesn’t require Jill to help me as I try to help her.
How I can be genuinely helpful
I started to think about how I could offer support without adding extra layers of complexity. Here’s what I’ve come up with to help others who may be in the same boat:
Offer preemptive help: Instead of waiting for Jill to ask for help, I need to anticipate her needs based on our daily routines. For instance, if I notice she is running low on medication or the laundry basket is getting full, I need to take care of these tasks without asking if she needs help.
Accept imperfection: Jill’s words about not needing perfect help were a valuable lesson. I realized that it’s OK if I don’t do things exactly as she would. What matters is that I’m lightening her load and giving her space to breathe. Accepting imperfection has also alleviated some of the pressure I put on myself to be the “perfect” caregiver.
Evolve and adapt: I must maintain an open line of communication while keeping in mind that being a caregiver is an evolving process. Each day brings new challenges and lessons. By listening to Jill and adapting my approach, I’m learning to provide the kind of help that truly makes a difference.
Remember, being helpful isn’t just about completing tasks. It’s about being a team, and great teams know how to win. Ultimately, what matters most is the love and intention behind the listening and the helping. In embracing this mindset, I hope to be not only a top-notch caregiver, but also the best husband I can be, because Jill has been such a wonderful, loving, and patient wife.
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.
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