🎵 “Money, Money, Money” – EOA & Medicare, Medicaid (abba)

& The Confusing Maze Nobody Prepares You For

Half of this process feels like paperwork, waiting, confusion, and hold music.

Let’s talk about:

👉 Medicare

👉 Medicaid

👉 SSDI

👉 Income limits

👉 What is FREE

👉 What is NOT

👉 What steps to take BEFORE you need it

Because eventually most Early Onset families realize:

👉 The financial side of this disease is almost as scary as the medical side.

💬 Disclaimer

I’m not a lawyer, insurance expert, or financial advisor—just a caregiver sharing what we learned trying to survive this system. Rules vary by state, age, work history, income, assets, and insurance plans. Always consult professionals for advice specific to your family.

🧠 FIRST: THE THREE BIG PROGRAMS

People mix these up constantly.

💼 SSDI = Social Security Disability Insurance

Social Security Disability Benefits (SSDI)

This is for people:

👉 Too disabled to continue working

For Early Onset Alzheimer’s:

👉 THIS is often the FIRST major step financially.

✔️ EARLY ONSET ALZHEIMER’S MAY QUALIFY FASTER

Compassionate Allowances Program

EOA may qualify under the Compassionate Allowances program, which can speed approval. Key point- THE Diaganosis must say Early Onset Alzheimers, not MCI, read the words for compasionate allowaces, print them and take to the DR, it is important they write it correctly the first time of exactly what it is. Otherwise, MCI, can house clean, greet at Walmart, etc.

✔️ WHO QUALIFIES FOR SSDI?

Generally:

• Must have work history/work credits

• Must be unable to work due to disability

• Diagnosis must significantly impair function

⚠️ IMPORTANT

SSDI is:

👉 NOT income-based welfare

It’s based mostly on:

👉 Work history and Social Security contributions

💰 MEDICARE = HEALTH INSURANCE (2 year wait once SSDI is approved at any age)

Official Medicare Website

Most people get Medicare:

• At age 65

  
  

  OR

• After receiving SSDI for 24 months

YES:👉 Younger Early Onset patients can eventually qualify through SSDI.

🧠 MEDICARE PART A (Usually FREE)

Medicare Part A Explained

Part A covers:

👉 Hospital-related care

Usually includes:

✔️ Hospital stays

✔️ Skilled nursing facility (short-term) (VERY SHORT)

✔️ Some home health care

✔️ Hospice care

✔️ IS PART A FREE?

Usually YES if:

👉 You or spouse worked enough years paying Medicare taxes

⚠️ WHAT PART A DOES NOT COVER WELL

❌ Long-term memory care

❌ Custodial nursing home care

❌ Ongoing assisted living

This is the part families misunderstand most.

🩺 MEDICARE PART B (Monthly Premium)

Medicare Part B Costs & Coverage

Part B covers:

👉 Medical care

Examples:

✔️ Neurologists

✔️ Doctors

✔️ PET scans (sometimes)

✔️ MRI/CT

✔️ Outpatient therapy

✔️ Durable medical equipment

💰 PART B IS NOT FREE

Most people pay:👉 A monthly premium

Premiums change yearly and may increase with higher income.

💊 MEDICARE PART D = PRESCRIPTION COVERAGE

Medicare Prescription Drug Coverage (Part D)

This is:

👉 Prescription insurance

Important for:

• Alzheimer’s medications

• Anxiety meds

• Sleep meds

• Mood medications

⚠️ CHECK DRUG FORMULARIES CAREFULLY

Some medications:

👉 May NOT be fully covered

Especially:

• New Alzheimer’s drugs

• Specialty medications

• Brand-name medications

🧠 MEDICARE ADVANTAGE (PART C)

Medicare Advantage Plans

These are private insurance plans replacing Original Medicare.

Sometimes include:

✔️ Drug coverage

✔️ Dental

✔️ Vision

✔️ Gym memberships

BUT:

👉 Networks can be restrictive and you will lose the GUIDE benefits, so read all the blogs closely and decide on the questions and run your own scenario through AI or Google.

Especially for specialists.

💔 MEDICAID = LONG-TERM CARE HELP

Medicaid.gov

Medicaid is:

👉 NEED-BASED/Income restricted

And this is the program that may help eventually cover:

• Nursing homes

• Memory care

• Long-term care services

• In-home assistance

⚠️ MEDICAID HAS STRICT RULES

This is where:

👉 Income AND assets matter

Rules vary by:

• State

• Marriage status

• Assets

• Home ownership

🧠 THE “SPEND DOWN” CONVERSATION

Families eventually hear:

👉 “You may need to spend down assets.”

Terrifying conversation.

This is WHY:

👉 Elder law attorneys matter SO much.

💡 THINGS TO DO 3–6 MONTHS BEFORE MEDICARE STARTS

✔️ Compare plans carefully

Especially:

• Neurology coverage

• Prescription coverage

• Specialist networks

✔️ Confirm ALL doctors accept your plan

Very important.

✔️ Organize medical records

You’ll need them repeatedly.

✔️ Review prescriptions

Especially:

• Alzheimer’s drugs

• Prior authorizations

• Tier costs

✔️ Ask about home health benefits

Even limited help matters.

🧠 WHAT I WISH I KNEW EARLY

DO NOT WAIT until:

👉 Crisis mode

The earlier you:

• Organize paperwork

• Learn terminology

• Meet with attorneys

• Understand benefits

The more options you may preserve later.

💛 THINGS THAT HELPED US MOST

✔️ Elder law attorney

✔️ SSDI application early

✔️ Caregiver Facebook groups

✔️ Binders/spreadsheets

✔️ Calling programs directly instead of trusting random internet advice

💔 THE TRUTH

This system is:

👉 Confusing

👉 Slow

👉 Overwhelming

And caregivers are expected to learn it:

👉 While emotionally drowning

🎵 Why “Money, Money, Money”

Because eventually caregiving becomes:

👉 Emotional survival

PLUS

👉 Financial survival

At the same time.

💭 Final Thought

If you feel confused by:

• SSDI

• Medicare

• Medicaid

• Disability paperwork

👉 You are not alone.

Almost every caregiver feels like they suddenly got dropped into:

👉 A second full-time job

The important thing is:

👉 Start early

👉 Ask questions

👉 Get professional guidance

👉 Don’t panic and make financial moves blindly

One step at a time is how families survive this part too.

💬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.

"Money, Money, Money" Abba

Money and EOA