“For better or worse, in sickness and in health…”
We said those vows with stars in our eyes, dreaming of growing old together—hand in hand on the porch, raising a family, exploring the world.
We never imagined that “sickness” would come so soon, or that “worse” would stretch for years. Or that one us of won't be able to live long enough to grow old together.
When Huntington’s Disease entered our marriage, it didn’t knock gently.
It barged in and rearranged everything.
But here's what no one tells you:
Love doesn’t disappear—it just learns a new language.
1. Redefining Intimacy
In the early years, we held hands, danced in the kitchen, exchanged long conversations, and finished each other’s sentences.
Now, intimacy looks different:
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Helping her brush her hair without frustration
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Learning to read her facial expressions when words fail
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Sitting in silence together on the hard days, knowing that just being there matters
There’s still love. Still commitment.
But the expression of it has shifted from romance to service—from passionate gestures to presence.
And that change… while painful… is still sacred.
2. Loving Through the Fog
Cognitive decline is one of Huntington’s cruelest symptoms. There are days when my wife repeats things, forgets events, or stares through me with no answer.
Those moments sting.
They challenge your identity—Am I still her husband if I am more caregiver, Healthcare assistant, etc?
But the answer is yes.
Because love isn’t rooted in recognition. It’s rooted in commitment.
“Love bears all things, believes all things, hopes all things, endures all things.” — 1 Corinthians 13:7
Even in the fog, I choose her. And that’s where love lives now—in the choosing.
3. The Quiet Grief of Lost Partnership
One of the deepest sorrows I’ve carried is the loss of shared decision-making. We used to dream together, plan vacations, talk about retirement. We made choices as a team.
Now, many of those decisions fall on me:
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Finances
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Medical care
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Long-term planning
Which chores to be done
What groceries are needed and dinners to fix
I grieve the equal partnership we once had. I miss her voice in the process. It's hard and often lonely for these shoulders to bare. We no longer share the same bed now as often times her frequent restless movement has become disruptive to my sleep.
But I also honor what remains. She still offers insight in flashes of clarity. Her disease can make her a little obesseive compulsive in repeating things so she can be a great reminder to do something. She will constantly remind you until its done. She still smiles when I bring her flowers. And even if she can’t contribute in the same way, her presence still matters.
4. Physical Touch: From Passion to Comfort
Huntington’s impacts muscle control and involuntary movements, which makes physical touch more complicated.
But we’ve found new ways to connect:
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A kiss on the forehead during medication time
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Rubbing her back while we pray before bed
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Holding hands at church, even if her grip is weak
Tucking her in bed and telling her "goodnight"
These small gestures have become our love language. Not flashy—but faithful.
5. The Weight of Care and the Guilt of Distance
This is a hard one to admit: sometimes, I feel the urge to pull back.
Not because I don’t love her—but because caregiving is exhausting.
Emotionally, physically, spiritually.
And in those moments, I feel ashamed for needing space. I used to work from home when this disease began but now, I work from elsewhere. To focus on the job and in some ways to provide a respite.
But here’s what I’ve learned:
Love doesn’t require you to be everything all the time.
Sometimes love means stepping outside for a walk.
Sometimes it means accepting help.
Sometimes it means letting a trusted friend or family member take a shift so you can breathe.
It’s okay to both love fiercely and protect your own well-being. One doesn’t cancel the other.
6. Cherishing the Moments That Still Shine
There are still sparks—small but bright.
Like when we play our wedding song and she hums along.
Or when she remembers a funny story from our first date.
Or when she looks at me with those same eyes that made me fall in love.
Huntington’s may steal a lot—but it can’t touch every memory, every smile, every heartbeat that still pulses with love.
We’ve learned to celebrate the “now.”
To soak up every moment of clarity, connection, and joy.
7. The Love That Grows in the Fire
It may sound strange, but in some ways, our love has deepened through this journey.
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It’s more patient.
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More resilient.
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More rooted in the sacred promise we made—not just to love in the good times, but to stand strong in the storms.
This isn’t the life we imagined.
But it’s still a life built on love. A different kind. A refined kind.
One that walks through suffering, side by side.
A Note to Other Spouses
If you’re walking this road too—caring for a husband, wife, or partner with Huntington’s or another chronic illness—know this:
You are not weak for feeling overwhelmed.
You are not selfish for needing time to cry, grieve, or rest.
And you are not alone in the quiet, confusing, courageous love you give every single day. Life can be/is messy, its okay for your house to be as well!
Scripture That Sustains Me
“We love because He first loved us.” — 1 John 4:19
God’s love teaches me how to keep showing up—how to love without expectation of return, how to pour from a place of grace, not guilt.
Final Thoughts
Our marriage looks different now—but it’s still sacred.
We may not dance like we used to.
We may not have candlelight dinners or spontaneous getaways.
But we still have love.
And sometimes, that’s enough.
Resources & Support:
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“Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” (many stories applicable to HD caregiving)
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Couples counseling through local hospitals or telehealth
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Online support forums for caregiving spouses (Facebook, HDYO, HDSA chapters)
