🎵"Takin' Care of Business" – EOA Diagnosis What To Do When Your Spouse Is Still Working (Bachman-Turner Overdrive)
Updated: Jun 7
Some of these blog posts may be repetitive, it is because it's been 3 years of this journey and writing, but if I write it again, maybe just this post will reach someone, and they will have more resources, than I did.
One of the biggest shocks after an Alzheimer's diagnosis isn't the diagnosis itself.
It's realizing that life doesn't stop.
The mortgage still shows up.
The electric bill still shows up.
Health insurance still matters.
Retirement still matters.
And somehow you're expected to become:
👉 HR Manager
👉 Insurance Specialist
👉 Disability Expert
👉 Lawyer
👉 Caregiver
👉 Spouse
All at the same time.
If your spouse is still working when Alzheimer's or another dementia diagnosis enters your life, this may be one of the most important posts I write.
Because what you do in the next few months can dramatically impact your family's financial future.
💬 Disclaimer
I'm not an attorney, HR professional, disability specialist, or financial advisor. I'm simply sharing what worked for us and the lessons we learned navigating Early Onset Alzheimer's while my husband was still employed. Every employer, insurance plan, and state is different. Always consult qualified professionals regarding benefits and legal matters.
😳 The Diagnosis Is In. Now What?
One of the first questions we faced was:
👉 "What do we do now?"
Honestly?
I didn't even know what benefits my husband had.
For most of our marriage, I carried the primary insurance for our family.
His employer offered benefits.
I just never paid much attention to them.
Then suddenly they became incredibly important.
📋 First Stop: Human Resources
Before I did anything else, I started gathering information.
Not assumptions.
Facts.
I wanted to know:
🩺 Insurance
What health insurance do we have and what does it cover (not much as far as the disease but that;s another day to discuss)?
What happens if his or my employment ends?
Is COBRA available?
💰 Disability Benefits
Short-Term Disability?
Long-Term Disability?
Supplemental disability coverage?
🏢 Employee Benefits
Employee Assistance Program (EAP)?
Critical illness coverage?
Life insurance?
Pension or retirement plans?
Do you have an advoacate from your benefits/employer?
Because once Alzheimer's is diagnosed, some doors may already be closing.
Certain insurance products require medical underwriting.
And once the diagnosis is in the medical records, obtaining new coverage may become difficult or impossible.
🚨 Don't Wait To Learn What's Available
This is one of the biggest mistakes families make.
They assume:
👉 "We'll figure it out later."
Then later arrives.
And their spouse can no longer explain anything.
Find out now: (there is a money blog that covers this too)
What accounts exist
What benefits exist
What coverage exists
While your spouse can still answer questions.
🏥 FMLA: The Benefit That Bought Us Time
One of the most important things we explored was:
Family and Medical Leave Act (FMLA)
For us, FMLA created breathing room.
And trust me...
When Alzheimer's enters your life, breathing room becomes priceless.
What Is FMLA?
FMLA is a federal law that may allow eligible employees to take:
✅ Up to 12 weeks of job-protected leave
✅ Continuation of employer health insurance
✅ Protected time to deal with serious medical issues
For many Alzheimer's families, it creates a temporary safety net while decisions are being made.
Who Qualifies?
Generally:
✔ Covered employer
✔ 12 months of employment
✔ 1,250 hours worked during previous year
✔ Employer size requirements met
Always verify eligibility through Human Resources.
💡 Why FMLA Was So Important
It gave us time.
Time to:
Understand the diagnosis
Meet doctors
Explore disability options
Review finances
Make legal plans
Breathe
Most importantly...
It helped prevent a worst-case scenario.
💔 The Fear Nobody Talks About
Being fired.
Let's be honest.
Many caregivers quietly worry about this.
Not because employers are bad people.
But because Alzheimer's can impact:
Memory
Communication
Decision-making
Productivity
Safety
And suddenly work performance becomes complicated.
FMLA can provide important protections while you figure out next steps.
I was fortunate Bob was in sales, and was the companies top sales person in the nation, but new software changes came in that brought his disease to light for me. He could sell, he could not learn new things (Old Dog, New Tricks is real)
💰 Disability Benefits May Be Next
If returning to work isn't realistic, disability benefits often become the next conversation.
This may include:
Employer Benefits
Short-Term Disability
Long-Term Disability
Government Benefits
Social Security Disability Insurance (SSDI)
And here's something I wish someone had told me:
👉 Start early.
Disability applications often take longer than you expect. aomeone told me GA was 320 days! Like what are they protecting, your own moeny from getting to you???
🔒 Protect Their Privacy
One thing I feel strongly about:
Protect your spouse's dignity.
For us:
I went directly to HR.
I didn't announce the diagnosis- they cannot ask and do not need to know.
I said "I am calling on behalf of my husband to request FMLA and see what long term benefits he has available" He's worked with these people 12 years (36 in industry) she started to cry, she said is it bad? I said terminal. I spoke the truth, it's a short 5-7 years after diagnosis (DX).
I didn't tell coworkers. (they called, I said today's not good)
I didn't make him explain his condition.
I handled as much communication as possible. I did not want him to say, "I'm fine, I can work" I knew he couldn't he wasn't safe on the road driving anymore, and customers began to notice his speaking (studdering and word repeating, and then the aphasia)
Because the reality is:
Your spouse is already losing enough.
They don't need their dignity taken too.
📞 Practical Things We Did
As things progressed, I:
✔ Redirected work calls
✔ Updated voicemail
✔ Worked with HR managers
✔ Gathered benefit information
✔ Put legal documents in place
✔ Established Power of Attorney
✔ Began planning ahead
Not because we were giving up.
Because we were preparing.
📂 Caregiver Checklist
Immediately After Diagnosis
☐ Contact HR
(I began this before the new years enrollement, because anything he did would look like fraud, he could not enroll in benefits for next year without disclosing his diagnonsis)
☐ Request benefits information
☐ Review disability coverage
☐ Review health insurance
☐ Explore FMLA
☐ Review retirement accounts
☐ Verify beneficiaries
☐ Meet with elder-law attorney
☐ Establish POA documents
☐ Begin SSDI research
☐ Create financial inventory
Decide if you want to ask about accomendations at work, this may be an option only if they work from home and can be managed, but the minute they are struggling talking or driving you are risking your whole life and the others on the road with them.
💛 What I Learned
You don't have to solve everything immediately.
You just need enough information to make good decisions.
At first, I felt like I had to figure out the next ten years.
I couldn't.
Nobody can.
But I could figure out the next week.
Then the next month.
Then the next step.
🎵 Why "Takin' Care of Business"
Because that's exactly what this stage becomes.
Not glamorous.
Not romantic.
Not fair.
Just taking care of business.
Protecting your spouse.
Protecting your family.
Protecting your future.
One form.
One phone call.
One decision at a time.
💭 Final Thought
If your spouse is still working after an Alzheimer's diagnosis, don't panic.
Gather information.
Ask questions.
Learn what benefits exist.
Explore FMLA.
Protect their dignity.
And buy yourself enough time to make thoughtful decisions.
Because sometimes the most important thing you can do isn't solve the problem.
It's create enough space to understand what comes next.
Helpful Resources
📋 U.S. Department of Labor – FMLAhttps://www.dol.gov/agencies/whd/fmla
💰 Social Security Disability Insurance (SSDI)https://www.ssa.gov/benefits/disability
🧠 Alzheimer's Associationhttps://www.alz.org
💬 Disclaimer
I’m not a doctor, lawyer, therapist, or expert—just a wife trying to figure this out one day at a time. Everything shared here is based on our experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with professionals when needed.
I also use AI to help clean up my writing, organize thoughts, and pull together resources because honestly… caregiver brains are tired too. If something here helps another family feel less alone, then it’s worth sharing.
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