“I didn’t choose this title. But I embraced it.”
One day I was a husband.
The next day, I was also a caregiver.
Not in name—no one came up and said, “Congratulations, here’s your new job description.”
But in reality—when the cooking, driving, finances, medications, appointments, and emotional support all shifted toward me—everything changed.
And while there are books and websites that can guide you through caregiving basics, there’s another side to this role that no one really prepares you for. So this post is for the silent warriors out there. The spouses, sons, daughters, and friends who’ve stepped into the fire of caregiving without warning.
1. You Will Grieve a Living Person
This is one of the hardest truths to put into words. When your loved one has a degenerative disease like Huntington’s, they don’t disappear overnight—but piece by piece.
You start to grieve the things they no longer do:
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Laugh at the same jokes
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Remember inside stories
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Move with ease
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Speak without effort
The trips and adventures you had planned together but will probably never complete now
Grieving someone who’s still in the room feels strange. But it's real. And it’s okay to name it. I have caught myself at odd moments just almost in tears (and sometimes actual tears) in the thoughts of the person that she once was, and now, never will be again.
2. You’ll Learn More About the Medical System Than You Ever Wanted To
I’ve become part therapist, part nurse, part pharmacist, part personal assistant—and full-time advocate.
You’ll have to fight for:
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Timely appointments
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Referrals that don’t get lost and require follow-up
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Medications that are covered and their side-affects (every so often we have to do medication changes and then I start a part-time job researching possible medications and interactions)
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Professionals who listen
Community resources
No one gives you a handbook. But you learn fast that persistence is your best tool.
3. Your Own Health Will Be at Risk (Unless You Guard It)
This job is emotionally exhausting and physically draining. I’ve had weeks where sleep was rare, meals were skipped, and stress sat like a weight on my chest.
It’s why the data shows caregivers have higher rates of:
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Depression
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Anxiety
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Cardiovascular issues
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Immune disorders
And yet, taking care of you isn’t selfish. It’s necessary. Your loved one needs you whole, not just surviving.
What’s helped me:
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Scheduled time away (even 30 minutes walking outside)
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Respite care or adult day programs
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Therapy (virtual or in-person)
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Honest conversations with trusted friends
Find a hobby or interest group that gets you away from home for a couple of hours during the week.
4. People Will Say the Wrong Things
“Well, at least she still remembers you.”
“You’re such a saint.”
“I could never do what you’re doing.”
“Have you tried essential oils?”
They mean well. But their words sometimes land like bricks. There are days when all you want is someone to see you, not praise you. You don’t want a medal—you want a nap. Or someone to bring dinner without asking, or even just doing dishes, laundry, or simple house cleaning.
That’s why finding other caregivers or a support group has been life-giving for me. People who just get it. No explanations needed. Other times, you just need someone to listen to you. Let you vent your frustrations, your tiredness, etc., and just hear you.
5. You’ll Discover Strength You Didn’t Know You Had
It’s not all hardship. There’s also a quiet, steady power that comes with this path.
You’ll find:
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Resourcefulness: You can make a bad day better with music and humor. One day I was having a hard day or week and I heard this song, "Gravity" by John Mayer. That just said it all for me.
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Patience: You learn to speak gently when emotions flare or words are hard to find.
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Creativity: You find ways to adapt routines to fit shifting abilities.
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Resilience: You get knocked down, but you get back up—again and again. Some days you will do better than others and try not to be too hard on yourself.
6. Your Relationship Will Change—but Love Can Still Grow
Caregiving changes intimacy. Romance, roles, rhythms—they all shift.
At times I’ve felt like more of a nurse than a husband. Other days, like a protector more than a partner. And sometimes…like a ghost of the man I was before all this began.
But even in the hardest days, I’ve found new ways to love my wife:
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Helping her feel beautiful when she forgets how to smile
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Celebrating small wins, like making it through the day with no falls or confusion
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Saying “I love you” when words are hard, but presence says it louder
Kissing her good night and tucking her in bed and then greeting her again in the morning.
7. Faith Will Be Tested—and Strengthened
There have been nights I’ve stared at the ceiling asking God, “Why her? Why us?”
And then…
There are mornings where His mercy shows up in unexpected ways—a good day. A kind nurse. A laugh we thought we’d lost. A moment of clarity that feels like grace.
“My grace is sufficient for you, for My strength is made perfect in weakness.” — 2 Corinthians 12:9
Those words have carried me more than once. Not because they erase the pain—but because they give it purpose.
Final Thoughts: You’re Not Just a Caregiver
Yes, the responsibilities are real.
Yes, the emotional toll is steep.
But you’re more than what you do.
You’re a human being walking through fire—learning, growing, grieving, and loving all at once. And if no one has told you this lately:
You are seen.
You are doing enough.
And you are not alone.
Resources for New Caregivers:
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The Caregiver’s Companion – book by Debra Kelsey-Davis
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“Caring for the Caregiver” YouTube series (look for reputable medical centers)
