🎵 “Every Rose Has Its Thorn” – EOA The Road to Disability (Cliff Notes) (Poison)
Updated: Aug 23
Nobody talks about this part.
The paperwork.
The waiting.
The confusion.
The system.
👉 But this is part of the journey too.
And if you do it right early…
👉 You can save yourself months (or years) of stress.
⚠️ First Advice (You May Not Expect This)
Before diagnosis—or very early on:
👉 Do NOT tell everyone yet
Why?
Too many opinions
Too much noise
Potential for people to take advantage
👉 Keep this between you and your partner while you get your plan together
Look at Finances
Look at Insurance
Look at benefits available
🧠 The Reality
You are about to enter a process that is:
Time-consuming
Paper-heavy
Emotionally exhausting
👉 Take a breath
👉 Go step by step
All you need:
A printer
A scanner (or phone)
Patience
🏛 Social Security Disability (SSDI / SSI)
Let’s get right into it.
👉 This can take up to a year
✔️ Step 1: Create Your Account
Create accounts for:
You
Your spouse
✔️ Step 2: Understand the Process
👉 Read BEFORE applying
✔️ Step 3: Do NOT Rush the Application
Download forms first.
👉 Start filling them out
👉 Gather ALL information
But don’t submit yet.
⚡ Compassionate Allowances (This is KEY)
If your diagnosis qualifies:
👉 You can move faster
Check here:
Examples:
Early Onset Alzheimer’s
Frontotemporal Dementia
Lewy Body Dementia
Mixed Dementia
👉 Make sure the diagnosis is clearly written this way
🏥 Get Your Medical Proof in Order
Before applying, you want:
Neurologist diagnosis
Neuropsych evaluation
Supporting tests (PET, MRI, blood, etc.)
👉 It needs to clearly show inability to work
📞 Apply WITH Support (Highly Recommended)
👉 Go in person or do a phone interview
Bring:
POA
All documentation
Doctor info and dates
Why?
👉 The Social Security rep:
Fills out everything correctly
Sees the struggle firsthand
Reduces delays from missing info
💼 Are They Still Working?
If YES:
Think carefully.
Income impacts benefits
Job performance may already be slipping
Risk of being fired or demoted
👉 This affects future disability payments
⚠️ Hard Truth
If you see signs…
👉 Others probably do too
And they may assume:
Substance use (A customer called me to ask if he was on something and that's when I knew he had to stop working soon)
Negligence
👉 Don’t let pride cause a bigger problem
📝 FMLA (If Still Employed)
Family Medical Leave Act:
Up to 12 weeks unpaid leave
Job protected
Must meet eligibility
⚠️ Important:
Cannot collect unemployment while on FMLA
🏥 STD / LTD (Work or Private Insurance)
Check for:
Short-Term Disability
Long-Term Disability
👉 If diagnosis supports it:
Have your spouse:
Contact HR
Request disability paperwork
⚠️ Note:
SSDI may reduce LTD payments
💰 If They’ve Stopped Working
👉 Apply for SSDI immediately
Gather:
Pay stubs
Tax forms
Social Security info
👉 Make copies of everything
⏳ Timeline & Payments (Cliff Notes)
5-month waiting period
Payments start after approval
Back pay is limited
👉 Medicare starts:24 months after disability approval
💡 What Most People Miss
👉 Organization is everything
Write everything down
Keep copies
Track every step
Make sure your DX is Very Clear
Unemployment if you haven't applied for SSD
This is where delays happen.
🌹 Final Thought
This process?
👉 Is frustrating
👉 Is slow
👉 Is emotional
But…
👉 It’s necessary
Because every rose…
👉 Has its thorn
💬 Disclaimer
Keep in mind, I am writing this blog over years, not in one day- I repeat some things, but because it became more applicable today. 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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