What it’s like when a Huntington’s patient sees decline in their own parent

There are moments when looking at my mother feels like looking into a future I am trying very hard not to fear.

My mother lives in a nursing home now. She is unable to walk, wears adult undergarments, and depends on others for many of her daily needs. I am one of her powers of attorney, so I’m not only her daughter, but also someone who helps advocate for her care, comfort, safety, and dignity.

That role is painful in ways I didn’t fully understand until I was living it.

I want to make sure my mother is treated with respect. I ask questions, speak up when something doesn’t feel right, and pay attention to the details of her care. But sometimes, while I’m standing beside her bed or talking with staff, a thought enters my mind: Will this be me one day?

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I also live with Huntington’s disease, so that question carries real weight.

I know that Huntington’s disease is progressive. I know it can affect movement, cognition, communication, mood, and independence. Watching my mother lose her abilities makes those possibilities feel close — sometimes too close.

I call it “future tripping” when my mind takes what is happening to her today and turns it into a prediction about my own life. If she can’t walk, I wonder whether I will lose my ability to do so. If she needs help with personal care, I wonder whether I will, too. If she lives in a nursing home, my mind can quickly place me there.

That’s when the fear starts to spiral. I have to actively remind myself that my mother’s experience is not a blueprint for my own.

We may share the same disease, but we’re still two different women. We have different medical histories, circumstances, and experiences with Huntington’s. Research continues to advance, and my care, support system, and choices are not identical to hers.

I don’t know what my future will look like. And neither does fear.

A lesson in dignity

Watching my mother has also taught me a great deal about dignity. There is deep vulnerability in needing help with the most private parts of daily life. But needing assistance doesn’t make a person less worthy of respect. Losing mobility doesn’t erase someone’s humanity. Wearing adult undergarments doesn’t erase a lifetime of memories, relationships, personality, and love.

My mother is still my mother. She’s not just Huntington’s disease.

That truth also helps me think about my own future differently. I’ve learned how important it is to have people around you who will ask questions, advocate for your needs, and make sure you are treated as a person rather than a diagnosis.

There is grief in learning these lessons. I miss parts of my mother that Huntington’s has changed. I miss the things she used to be able to do. Sometimes I miss simply being her daughter without also having to think about nursing home care, medical needs, safety, and advocacy.

And sometimes I am just sad. I allow myself to feel that sadness, but I also try not to let it pull me into a future that hasn’t happened. When my mind tells me, “This will be you,” I bring myself back to the present.

Today, I am here. Today, I can communicate with my medical team. I can manage my stress. I can rest when I need to. I can care for my body, nurture my relationships, advocate for myself, and continue creating a life that feels meaningful. I can prepare for the future without living in fear of it. That distinction has become essential.

My mother may feel like a mirror sometimes, but a mirror reflects what is in front of it. It does not predict what comes next.

So I’m learning to look at her with compassion instead of prophecy. I can grieve what Huntington’s has taken from her. I can protect her dignity. I can admit that I am afraid. And then I can return to today.

Her story is hers. Mine is still being written.

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.