Grieving Someone Lost to Huntington’s Disease

Grieving Someone Lost to Huntington’s Disease: Navigating the Long Goodbye

Grief is a deeply personal journey, but grieving someone who suffered from Huntington’s Disease (HD) is uniquely complex. Unlike sudden loss, HD can bring a prolonged, incremental farewell—one marked by gradual changes and emotional upheaval. Huntington’s disease profoundly affects an individual’s mood, movements, and cognition, creating unique challenges in daily life. Mood changes such as irritability, depression, or anxiety often emerge early, while involuntary movements—including chorea and muscle rigidity—progressively limit physical independence. Cognitive decline can impair memory, judgment, and the ability to concentrate, further complicating personal relationships and daily functioning. Grief becomes a natural part of this journey, as individuals and their loved ones process the ongoing losses—of abilities, independence, and future plans—that accompany the progression of the disease.

The Slow Fade: Living With Anticipatory Grief

Huntington’s Disease is a relentless genetic disorder that slowly erodes a person’s physical abilities, cognitive capacities, and emotional connections. Over the years, you witness your loved one’s world shrink. Their speech might become harder to understand, their movements less coordinated, and, perhaps hardest of all, their personality may seem to slip away. The person you love is still present, but the connection you once shared changes, sometimes profoundly.

This slow transformation gives rise to anticipatory grief—a sorrow that begins long before actual death. You grieve each small loss: a forgotten memory, a hobby abandoned, the shift in family roles. Every milestone, every change, can feel like a new goodbye.

The Unique Pain of Ongoing Loss

After years of caregiving and witnessing decline, the eventual loss can feel both like a relief from suffering and a devastation, respectively. There’s guilt in feeling relief, and there’s shock in realizing how much you’d already been mourning throughout the illness.

Even months after your loved one has passed, tears often come unexpectedly. You might cry at the sight of something they loved, or during a quiet moment when the weight of absence hits. The world may move on, but for you, the ache lingers—sometimes sharp, sometimes dull, but always present.

The World Keeps Moving

One of the hardest parts of grieving is the sense that the world continues on, indifferent to your loss. People go to the store, keep their appointments, and meet up with friends, carrying on with the routines of everyday life. Meanwhile, you may feel as though time has stopped, your world paused in the aftermath of your loved one’s passing. The contrast can make your grief feel even more isolating, as if you’re standing still while everything and everyone else rushes forward.

Grieving after a long illness like Huntington’s Disease is messy. There is no right timeline, no formula for healing. It’s normal to cry regularly, even many months and even years later. These tears aren’t a sign of weakness; they reflect the depth of love and the length of your journey.

Seeking support—through friends, family, HD support Groups, or counseling—can help. So can connecting with others who understand the unique heartbreak of HD. Remember to give yourself grace. You’ve endured a marathon of loss, and healing... or should I say, being able to function again, will take time.

Honoring Their Memory

As the acute pain of grief slowly softens, find small ways to honor your loved one’s memory. Share stories. Keep their favorite traditions alive. Celebrate the person they were before Huntington’s Disease, as well as the courage they showed during their illness.

Grieving someone lost to Huntington’s Disease means holding both the long, sorrowful goodbye and the love that endures beyond it. Let yourself feel, remember, and, when you’re ready, gently move forward—carrying their memory with you.

Here are some meaningful ways to keep someone’s memory alive:

• Creating a memory book or scrapbook filled with photos, stories, and mementos that celebrate their life and personality.

• Organizing an annual get-together, fundraiser, or event in their honor to support Huntington’s disease awareness.

• Planting a tree or dedicating a garden space as a living tribute where friends and family can gather to remember them.

• Sharing their favorite recipes, traditions, or hobbies with others to keep their passions and interests alive.

• Volunteering for organizations related to Huntington’s disease or causes that mattered to them, continuing their legacy of care and support.

• Choose a day, a day that belongs to them. Maybe it is their birthday, maybe it is a summer day,  then, do the things that they loved to do each year. Sing them Happy Birthday, go watch a football game, go shopping. Whatever it is you do, do it with intent.

• Sit around the living room, the campsite, the Christmas tree, or their special spot and talk about them.

• Save them a seat, physically or in spirit, for special events.

These acts not only honor the person’s memory but also provide comfort and connection for those grieving their loss. Sometimes it may be you, and that’s ok. If there are others to join you, have them join! In doing so, memories, support, and love are shared.