🎵 “Every Rose Has Its Thorn” – The Road to Disability (Cliff Notes) (Poison)

April 2023 (1 mo pre DX) almost a year since symptoms

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.

💬 Disclaimer (Read This First)

I’m not a doctor or a lawyer—just a spouse going through this in real time and sharing what I’ve learned. This is not medical, legal, or financial advice. Every situation is different, and you should always consult qualified professionals before making decisions.

I’m sharing this to help you move faster, ask better questions, and avoid some of the mistakes many of us made along the way. By using this information, you acknowledge that you are responsible for your own decisions and outcomes.

⚠️ 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

• https://www.ssa.gov/myaccount/

Create accounts for:

• You

• Your spouse

✔️ Step 2: Understand the Process

• https://www.ssa.gov/benefits/disability/

👉 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:

• https://www.ssa.gov/compassionateallowances/conditions.htm

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)

• 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

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 (At the End – Because It Matters)

I’m not a doctor, lawyer, or financial advisor—just someone living this and trying to help you navigate it a little easier. This is based on personal experience and shared insights, not professional advice.

Always consult with qualified professionals before making decisions about disability, employment, legal matters, or finances. What worked for us may not be right for you.

Use this as a guide to help you prepare, organize, and ask the right questions—but ultimately, your decisions are your own.

"Every Rose" by Poison