🎵 “Fix You” – EOA Trying to Hold On to the Words (Coldplay)

One of the hardest parts of this disease for me has been watching language disappear in real time.

Not memory first.

Not personality first.

Words.

The inability to find them.

The inability to organize them.

The fear in your spouse’s eyes when they KNOW what they want to say… but their brain cannot get it out.

And let me tell you something:

That pain is REAL.

Y

ou can see it all over their face when the word salad gets so bad that nobody understands them anymore.

And honestly?

Sometimes you stop correcting the words and start listening to the emotion instead.

Because eventually communication becomes:

Tone.

Eyes.

Body language.

Fear.

Frustration.

Energy.

Not just words.

💬 Disclaimer

I’m not a doctor or speech therapist—just a caregiver sharing our personal experience with Early Onset Alzheimer’s, aphasia, and cognitive decline. Please consult qualified healthcare professionals for medical advice, therapy options, and treatment plans.

🧠 What Is Aphasia?

Aphasia

Aphasia is a language disorder caused by damage to areas of the brain responsible for speech and communication.

It can affect:

• Speaking

• Understanding

• Reading

• Writing

• Finding words

• Organizing thoughts

Many people associate aphasia with:

• Stroke

• Traumatic brain injury (TBI)

But it also happens in:

👉 Alzheimer’s disease

👉 Early Onset Alzheimer’s

👉 Frontotemporal Dementia

👉 Other neurological diseases

💔 The Fear In Their Eyes

This part will break you.

Because your person often KNOWS:👉 The words are wrong.

They know:

• They are struggling

• Other people are noticing

• They cannot keep up

• They are losing communication

And that realization creates:

👉 Anxiety

👉 Anger

👉 Embarrassment

👉 Withdrawal

🧠 Do You Correct Them?

Honestly?That depends.

Sometimes:👉 Correcting every word creates frustration and shame.

Sometimes:👉 Helping them find the word calmly reduces panic.

I’ve learned:👉 The GOAL is communication, not perfection. I will never call a duck, a duck anymore, they are dicks....plain and simple.

💡 What Helped Us Most

About a year after diagnosis, I had a friend whose girls had gone off to college and she suddenly had spare time again.

She had once been a licensed speech therapist.

So I asked her:

👉 “Have you ever worked with aphasia in Alzheimer’s?”

Guess what?

👉 No.

And honestly?

We found VERY little out there specifically for:

• Early Onset Alzheimer’s

• Young Alzheimer’s

• Progressive aphasia in dementia

There were:

• Stroke workbooks

• TBI worksheets

• Speech recovery tasks

But almost nothing focused specifically on:

👉 EOA spouses trying to hold onto life skills and communication.

What This Amazing Friend Did

She LEARNED.

She researched.

She adapted.

She listened.

And together we focused on:

👉 Preserving important daily function and communication as long as possible.

She worked with Rob several days a week for a few hours at a time.

Sometimes:

• Games

• Matching puzzles

• Word exercises

• Picture identification

• Repetition drills

• Phone practice

• Emergency skills

• Common Sense reminders (Bad Snakes, road rules bike riding, garage code, not to go near gators, to show his bracelet if he was confused)

📱 What We Kept Practicing

Not random trivia.

REAL LIFE survival skills.

Things like:

• How to unlock his phone

• How to call 911

• My name

• His name

• The kids’ names

• Our grandbaby’s name

• How to ask for help

• What to do if he got lost

We repeated them:

👉 Over and over and over.

🧠 Did It Work?

Some things:👉 Yes.

Some things:👉 No.

But he is HOLDING ON.

And honestly?

That matters.

💛 Muscle Memory LASTS Longer

This became one of the biggest lessons for us.

He may not:

• Remember the address

• Explain directions

• Retrieve words properly

BUT:

👉 He can still:

• Ride his bike

• Tie shoes

• Exercise at the gym

• Navigate familiar places

• Use routines (shower and teeth)

• Dress himself

  
  

Why?

👉 Muscle memory.

🧠 Experts Believe Procedural Memory Often Lasts Longer

Procedural memory =

👉 “How” memory

Things repeated regularly:

• Riding a bike

• Gym routines

• Brushing teeth

• Familiar driving routes

• Phone habits

• Daily rituals

These skills often remain longer than:

👉 Short-term memory or language skills.

💡 We Started Leaning INTO Muscle Memory

If something mattered:👉 We practiced it repeatedly.

Every day.

Not because he fully remembered it consciously…But because the brain sometimes retains routines through repetition.

🚶 Things We Still Work On

• Asking for directions while driving

• Paying attention in stores

• Finding items independently

• Social interaction

• Phone usage

• Safety habits

I literally send him into stores to look for items like you would a child learning independence.

Why?

👉 Because stopping all stimulation speeds decline.

🧠 What Experts Say About Cognitive Engagement

Research suggests mentally and socially engaged patients may maintain function longer through:

• Routine

• Social interaction

• Physical activity

• Cognitive exercises

• Speech therapy

• Structured engagement

Not curing the disease.

But helping preserve:👉 Quality of life and retained skills longer.

🩺 Can Speech Therapy Help?

YES — especially earlier stages.

Speech-language therapy may help with:

• Word retrieval

• Communication strategies

• Reading/writing support

• Alternative communication methods

• Caregiver communication training

And yes:

👉 Medicare may cover medically necessary speech therapy ordered by a physician.

⚠️ What Gets Lost In Different Stages?

Every person differs, but generally:

Early Stage (2–4)

• Word finding difficulty

• Forgetting names

• Trouble organizing thoughts

• Losing train of conversation

Mid Stage (4–5)

• Word salad

• Repetitive phrases

• Difficulty following conversations

• Aphasia worsening

• Communication frustration

Later Stage (6–7)

• Severe language decline

• Limited vocabulary

• Short phrases only

• Loss of reading/writing

• Communication through emotion and behavior

💔 The Reality

You cannot completely stop:

👉 The language decline.

And that is devastating. We stopped the weekly session in Stage 5, he was just getting frustrated, but he still recognizes "his lady" my dear friend, with the patience of a saint, and a heart of GOLD.

But you CAN:

👉 Keep them engaged

👉 Keep them practicing

👉 Keep routines alive

👉 Keep the brain stimulated

👉 Preserve dignity

👉 Reduce fear

Carrie's Heart of Gold

And honestly?

Sometimes that’s enough.

🎵 Why “Fix You”

Because caregiving bhttp://matters.Loveecomes this constant quiet attempt to:

👉 Help hold together the parts of someone slipping away

Even when you know:

👉 You cannot fully fix it.

💭 Final Thought

Keep talking to them.

Keep practicing.

Keep engaging them.

Keep bringing them into life.

Because isolation speeds decline.

Engagement matters.

Repetition matters.

Love matters.

And sometimes:

👉 Holding onto ONE word, ONE routine, or ONE familiar skill a little longer…Feels like winning.

Helpful Resources

Alzheimer’s Association – Communication & Alzheimer’s

National Aphasia Association

National Institute on Aging – Alzheimer’s Caregiving Tips

💬 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 comes from our personal experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with qualified professionals when needed.

I also use AI to help clean up my writing, organize my thoughts, and pull together resources because honestly… caregiver brains are tired too. Nothing here is meant to replace medical, legal, or professional advice.

If something on this site helps another family feel a little less alone, then it’s worth sharing.

"Fix You" Coldplay (so good)

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