Refuel #29

🔥 Refuel | Issue #29
A Newsletter from Faith + Gasoline
📅 Subject: “Caregiving for the One You Promised Forever”

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🛠️ Welcome to Refuel

Hey fam,

Caregiving changes everything.
But when the person who needs care is your spouse—it can turn your whole world upside down.

Recently, an old friend of mine reached out to tell me her husband had just been diagnosed with dementia. She had followed my mom’s journey and wanted to reach out and share her story. I get it. It’s scary when they say those words. And hoping to get help from the doctor usually means a pill or some treatment that they don’t know if it works or not.

And the person you would have turned to for support is now the one who needs it.

The one who was your partner, your equal, your co-parent, your teammate—suddenly needs you in ways you never imagined. It’s not just love anymore. It’s medicine, doctors’ appointments, schedules, bills, and decisions.

And sometimes it feels like you lost the partner you once had, even though they’re still here. This issue is about the unique challenges—and quiet heartbreak—of spousal caregiving. And just like with anyone else you have to care for that you love, remember to leave enough runway to grieve.

Even Michael Irvin struggles with the financial and emotional cost of Alzheimer’s. But like most of us, he insists on keeping her at home. He also touches on the difficulty faced by the caregiving team and how many families struggle under the weight of this disease. Shannon Sharpe isn’t the best interviewer, but you will get the point.

🚗 Story from the Road: “We Didn’t Plan for This”

A friend of mine once said, “I thought retirement would mean traveling with my husband. Instead, it means making sure he gets to dialysis three times a week.”

I can’t tell you the number of men my age whose eyes light up when I share that I took care of my mom. But I am not starting a relationship as a caregiver…so you need to keep looking.

My friends who have spouses with health issues never complain. But you can tell this is not what they signed up for. Of course, they knew the vows, but people are getting sick in their 40s and 50s. Those long trips around the world after retirement for many couples are a pipe dream.

And with early-onset dementia rising, expect to hear more of these stories.

That’s what spousal caregiving does. It reshuffles the deck.
Dreams, plans, intimacy—all get rewritten. And no one really prepares you for that.

And Alzheimer’s is a long, slow march. And it is relentless. Stay strong.

📊 What Makes Spousal Caregiving Different

💍 The Emotional Toll
Caring for a spouse can feel like grieving while they’re still alive—because the marriage dynamic shifts from partnership to patient-caregiver.

💸 The Financial Strain
You’re not just covering care costs—you’re also protecting your own retirement and stability, since spouses share assets.

⚖️ The Legal Complexity
Spousal rights differ from those of child caregivers. Medicaid rules, estate planning, and power of attorney documents affect both of you.

🕊️ The Hidden Loneliness
Many spousal caregivers don’t ask for help—because they feel it’s their “duty.” But silence leads to burnout. I waited too long to get help, and I know why, because it’s hiring a stranger, but do it. Even if it’s before the person “needs” it. There will be days you will need it, and can’t leave, so don’t delay.

⛽ Quick Refuel: ✅ 5 Steps for Spousal Caregivers

✅ 1. Don’t do it alone. Even if you’re the main caregiver, pull in friends, adult children, church members—anyone you trust. If they offer, say yes. You will need help.

✅ 2. Protect your finances. Meet with an elder law attorney or financial planner. What affects them affects you. It’s totally worth it. Do it.

✅ 3. Update paperwork. Make sure both your wills, powers of attorney, and health care proxies are current.

✅ 4. Plan for respite. Caregiving for a spouse is 24/7—schedule breaks so you can breathe and recover. Also, if someone volunteers for a shift, let them. If you can afford to bring in help, do it.

✅ 5. Keep the love alive. Even small gestures—holding hands, date nights at home, saying “I love you”—help preserve the bond beyond the illness.

📌 Takeaway: Caregiving doesn’t mean marriage ends. But it does mean marriage changes. The challenge is finding love inside the new normal. And don’t underestimate how exhausting it all can be.

📌 Next Steps

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📘 Recommended Read:
Refuel: The Caregiver’s Handbook - This digital download is the perfect introduction to long-term caregiving! Buy it for yourself or a friend. Many of you are caregivers, even if you don’t know it yet!

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📢 Share this with a friend or family member walking the road of spousal caregiving. They may not say it out loud, but they need support too.

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Caregiving for a spouse is a test of vows, of patience, of faith.
It’s not the life you pictured—but it can still be a life of love.

Go be great. 🚀💙
Love you.

With faith & fuel,
Judith A. Culp