Andi & Jim Erwin: Bringing Alzheimer’s out of the shadows

UPDATE, June 19, 2018:  Jim Erwin passed away today.  Andi was an incredible caregiver until the end.  “Love Never Forgets.”  

UPDATE:  I wrote the story below about Andi and Jim Erwin in 2014.  Jim has had Alzheimer’s for several years, and Andi has been a great advocate for him and other Alzheimer’s patients.  She speaks and writes eloquently about their challenges, their victories, and their struggles.  They recently celebrated their 47th wedding anniversary, and Jim will soon turn 70.  His condition has worsened since I met them in 2014.  Andi recently wrote a poem on the occasion of their anniversary, and I am honored to share it with you.

 

Forty-seven years ago we said “I do”
We didn’t have a clue what we would go through.
Thirteen days later you left for Vietnam
I stayed back and lived with Dad and Mom.
When you returned we moved out west
But then we had to figure out what was best.
We had become so different in that year
We had our “discussions” and cried many tears.
On to the Seminary we would go
Four years later we left with Kristin in tow.
Michelle would come later in Georgia, barely
As we moved the next day to Tennessee.
Our family complete, our happiness grows
We move several times as our story goes.
A Doctorate you got, you were so excited
The girls and I were definitely delighted.
We pastor this church, we pastor another
The girls grow up, we are their proud Dad and Mother.
Twelve years ago we were told something sad
We were told that your smart brain was going bad.
The word was Alzheimer’s,
Nothing rhymes with that!
Now it is I who will wear many hats.
The disease moved fast as it killed off your brain
It was like a fast moving train.
Within two years you couldn’t write or read
How can someone so smart lose it at this speed?
Within three year you couldn’t talk
And you still loved to take those walks.
I’ve screamed out loud, I’ve cried many tears
I would not trade the time I’ve had with you through the years.
I now have to feed you and dress you
I also bathe you and shave you
But now I get to hold your hand more often as I lead you.
When I am gone for the day and I return home
There are no words to greet me, I want to groan.
But I do get a smile
A sparkle lights your dull eyes
You do your best as your respond with a sigh.
I come to hug you and kiss you
And you say “Aaaahhhhh”
That is enough to make my heart pause!!!!

 

ORIGINAL STORY FROM NOV. 22, 2014:

I want to share a Thanksgiving love story.

 

Those smiles belong to Jim and Andi Erwin of Collegedale, now married 45 years.  Jim is 68, Andi is 63.  I met them last summer, and fell in love immediately.  Andi is a talker.  Full of life, with energy to spare.  Jim used to be a talker, an award-winning one.  In his youth he was a teacher and pastor, very well-educated.  Simply put,  he was tested at near-genius levels.

Having grown up poor, he could do physical labor, but he specialized in communicating.  His storytelling skills were beyond compare.  His speeches were in demand.  He delivered thousands of sermons over a thirty-year period, each one better than the last.

Suddenly, at age 57, there were signs something wasn’t right.  His razor-sharp memory began to fail.  His once-smooth delivery was now interrupted by embarrassing pauses and gaps.

Andi saw what was happening to her husband, and recognized it sooner than most.  Eleven years earlier, Jim’s father exhibited some of the same symptoms.  Andi and Jim became his caregivers for more than a decade, until they could care for him no longer, placing him in a nursing facility.  Soon after, Jim’s father passed away.

In the prime of  their lives, and with two teen daughters, life had dealt the Erwins a difficult hand.  Being an Alzheimer’s caregiver, as millions can testify, is a draining job.  She and Jim had juggled their lives around the needs of Jim’s dad.  As with most advanced Alzheimer’s patients, his passing was viewed with sadness, yet relief.  In an instant, his pain and confusion were lifted.  The Erwins could now focus on their remaining good years.  Jim had big plans, to complete a Doctorate in Communication and a Doctorate in Leadership, a process he had begun at the age of 54.

Just a few months after the death of his father, Jim’s own descent into the shadows began.  He was diagnosed with early-onset Alzheimer’s.  Doctors told Andi they “had never seen a brain that had shrunk so much, so quickly.”  That was in March 2004.  He continued to work as long as he could, but by early 2005, leaders of the Seventh-Day Adventist Church met with the couple, and told them it was time for Jim to step down.  By early 2008, at the age of 62, Jim had lost the ability to speak, read, or write.

In the years since, he has suffered physical setbacks including a 2012 seizure that resulted in a 17-month stay in an assisted living facility.  His reactions to medications can change without notice, affecting his usually affable personality.  Andi has become an active, outspoken advocate for Alzheimer’s research, and frequently leads the fund-raising pack in the annual Walk to End Alzheimer’s, leading the “Papa’s Paraders” team, named in honor of Jim.

She’s quite candid when asked about the challenges she and Jim face every day.  “He has gradually become a small child living inside a grown man’s body,” she said.  A particularly poignant Facebook post described a recent visit to the grocery store.  “Leaving the store, I unloaded the groceries into the car.  Jim and I then proceeded to go put the cart into the area for them in the parking lot.  Jim would not let go of the cart (he has done this before). A friend came up, and I asked him if he would shake Jim’s hand to say hello. It worked!  Jim turned loose of the cart! Thanks Steve!”

I met the Erwins after offering to sell some of my TV news ties for charity.  Andi saw my Facebook post, and we agreed to put the ties to good use: she would buy them with a $100 donation to the Alzheimer’s Association, and I would match it with another $100, resulting in a $200 donation.  Andi brought Jim to the station, and we posed for a picture.

She described their life together.  “There are alarms all over the house, because he’s still quite mobile,” she said.  “I prepare his food, help him eat it, brush his teeth, bathe him and dress him.”

What keeps him occupied? “He loves his old magazines,” she said. “Lately he’s taken to rubbing the papers. That seems to give him comfort.”

I had to ask. “Do you still see signs of the real Jim Erwin, the man you fell in love with?” I asked.  “Oh yes,” she said. “He’s still in there. When I kiss him at night, he starts giggling.”

She’s learned to appreciate the little things. “Some of my friends who are Alzheimer’s spouses answer the same questions dozens of times a day, because their loved one can still speak,” she said. “I haven’t heard Jim say ‘I love you Andi’  in six years, and I know I’ll never hear his voice again.  But I know he loves me, and he knows I love him.  We’re in this together.”

“For as long as we’re able, we’re going to live our lives,” she said. “We go to restaurants, and people will see me feeding him.  They’ll stare at first, but then they’ll smile. They seem to understand.”  Yes Andi, we understand.  This is what love looks like.  Even as this cruel disease gradually dims the lights, we can still see the sparkle in Jim’s eyes.

November is National Alzheimer’s Disease Awareness Month and National Caregivers Month.  For more information, click here.