"When Memory Fades, Love Remains" Marilyn Raichle Host Bill Clarke

Episode Title: Don't Walk Away: Finding the Person Beyond Alzheimer'sHost: Bill ClarkeGuest: Marilyn Raichle, author of Don't Walk Away: A Care Partner's Journey

Bill Clarke:Welcome to another episode of Scrambled Eggs & Ham.
Tonight, I'm going to be the scrambled eggs, and Marilyn, you're going to be the ham. I hope you like ham!
Our special guest this evening is Marilyn Raichle, author of the remarkable book Don't Walk Away: A Care Partner's Journey.
Marilyn was kind enough to send me a copy of her book, and after reading it, I can honestly say it is one of the most moving books I've read in a long time. It's deep, it's honest, it's heavy in all the right ways, and it truly touched my heart.
Let me read something from the back cover because it captures the heart of her story.
"She grew up in the shadow of Alzheimer's. Nearly everyone in Dad's family and many in Mom's developed the disease. Mom warned us, 'Keep your distance. Your father and I will be in a safe place. There's nothing more you can do. So walk away. We won't remember you. Live your life and don't sacrifice it for us.'
I believed her.
As I began my caregiver journey with Mom, I saw only loss, not the person. Heard only confusion, not the thoughts. Everything changed in an instant.
Then Mom began to paint."
Marilyn, thank you so much for joining me on the Scrambled Eggs & Ham podcast.

Marilyn Raichle:My pleasure. Thank you for inviting me.

Bill:I really appreciate you sharing your time with us and with our listeners.
There's so much in this book that resonated with me. One part that especially touched me was your mother's painting because I'm also a painter. After my stroke, painting became part of my own recovery. I know firsthand how art can reconnect us with ourselves.
So I'd like to begin with the question that stayed with me after finishing your book.
Your mother repeatedly told you to walk away.
What happened inside you that made you decide to walk toward your parents instead?

Marilyn:Well... with huge reluctance.
There were five children in our family, and Mom told all of us over and over again to walk away if this ever happened.
We believed her.
That was the family plan.
Then I went away to graduate school. When I came back, it was during the recession, and there simply weren't any jobs.
My family got together and said,
"Okay... we're going to pool our resources, we'll keep your phone on, and you're going to become the family caregiver."
Well... suddenly I had a job.
Not the job I wanted.
Not one that paid very well.
But it was a job.
I couldn't walk away.
The truth is...
I wasn't a very good caregiver.
Every day I'd hear Mom's words in the back of my mind telling me,
"Walk away."
I'd spend my visits looking at the clock.
I didn't know anything about caregiving because I never intended to become one.
For that first year, though, Mom and Dad were still my parents, and we all wanted the best for each other.
Mom wanted the best for Dad.
Dad wanted the best for Mom.
Then everything changed when Dad died.

Bill:Let me ask you something.
Did your father also have Alzheimer's?

Marilyn:He had Parkinson's disease, and Parkinson's can also cause dementia.
He likely would have developed Alzheimer's-type dementia had he lived longer because it was in his family as well.
Both of my parents needed care.
I always want to make something very clear.
I was not a full-time home caregiver.
Those caregivers have the hardest job imaginable.
My parents lived in a wonderful community where their daily care needs were met.
My role was different.
I helped them stay connected to the world.
I took them to medical appointments.
I advocated for them.
At first, I wasn't very good at it.
But over time, I stopped fighting the experience and slowly became better.

Marilyn:When Dad died, he was eighty-nine.
My brother, my sister, Mom, and I were all in the room.
Mom happened to be asleep.
We debated whether we should wake her.
We thought,
"If she won't remember... are we just going to make her relive this every day?"
But they'd been married for seventy-two years.
So we woke her.

Bill:Seventy-two years.
That's incredible.

Marilyn:It really was.
What surprised me most was seeing my mother cry.
I'd never seen her cry before.
You have to understand our family.
We were Scottish Calvinists.
There was an unwritten rule:
You do not cry.
If you cried, it suggested you didn't believe the person was going to Heaven.
So...
you simply didn't cry.

Bill:If crying wasn't allowed...
how did people grieve?

Marilyn:Honestly...
they didn't.
Our family was emotionally very restrained.
Emotions were considered an indulgence.
You swallowed them.
You simply kept going.
There were no funerals.
No memorial services.
No public grieving.
I once asked Mom why.
She said,
"Because it's showy."
That was simply how our family operated.
When someone died...
life just moved on.

Bill:That's an incredibly different way of looking at loss.

Marilyn:It was.
The next morning, I visited Mom.
She remembered Dad had died.
We talked about him.
The following morning...
she remembered again.
Then on the third morning I found her lying in bed crying.
She looked at me and said,
"I just want to be with your father."
Without thinking, I answered exactly the way the younger version of my mother might have.
I said,
"Well Mom... you should have thought of that before you spent your whole life taking such good care of yourself."
She laughed.
Then she smiled and said,
"Well... that's life."
From that moment forward...
it was almost as if she placed her grief in a small box and chose to reconnect with the world.

Marilyn:She was terribly bored.
So I took her to a painting class designed for people living with memory loss.
Neither of us expected much.
Then she painted something beautiful.
I was stunned.
So we went back.
Again and again.
That's when I realized something remarkable.
My mother was still there.
She still had imagination.
She still had humor.
She still had joy.