How my birthday party raised $20K for Alzheimer’s Research and changed my life

The year that my Mom turned 75, I was staring down my 50th birthday.  In every free moment, my mind filled with one subject: Alzheimer’s.  Mom has it.  Will I?  Has it started already? When will I start showing signs?  Is there a way to be diagnosed?

At just the right moment, I was given a life-changing gift.  The President of my Rotary Club had made a commitment that every member of the Board would attend the District Conference in Pawley’s Island, SC that year.   I really should have been at my parent’s house that April weekend, putting away Mom’s wool pants and sweaters, and bringing out her summer blouses.  Instead, I was at the coast, in a blustery storm for the weekend.  Great.

By Saturday night, the temperature had dipped so low I wore slacks under my gown to the banquet.  After dinner, District Governor Kim Gramling was introduced and stepped to the podium.  She began her introduction of the keynote speaker.  DG Kim introduced the speaker as someone she admired so much that she had invited him to be here tonight four years ago.  The speaker’s topic would be Rotary’s effort to cure Alzheimer’s disease.  And then she introduced Roger Ackerman, the founder of a project called “Coins for Alzheimer’s Research Trust”  or CART.

Roger Ackerman began with these words:  “My mother-in-law had Alzheimer’s for 18 years, the last five of which she knew none of us.”   Her story inspired Roger and his Rotary Club to set their sights on making an impact in the cure for Alzheimer’s.  Back in 1995, Roger identified the need for seed money to test cutting edge Alzheimer’s research ideas. His club, the Sumter SC Rotary, began collecting pocket change with the goal of one day bestowing a grant for cutting edge Alzheimer’s research.  The first grant of $100,000 was awarded in 1999.  Since then, grants have been made every year.  100% of each donation goes to Alzheimer’s research, and the program is run by volunteer Rotarians.  (Learn all about it at www.cartfund.org )

During Roger’s talk, my clouds parted.  I could see that rather than dreading my birthday, and feeding my fear, it was time for me to get busy living.  If one Rotarian could ignite such a crucial project – and pay for it with pocket change – I could certainly invite my friends to support CART Alzheimer’s research grants in lieu of birthday gifts. 

I invested about five weeks in July and August 2013 to put together a benefit for The CART Fund in honor of my Mom.  Makin’ Memories for Alzheimer’s Research was held on August 23, and a private house concert was held on August 24th.  Together they raised $20,000 for Alzheimer’s research grants from The CART Fund.

 I thought this was the happy ending of my Alzheimer’s story. 

As it turned out, it was just the beginning…

Grief is a mighty fuel.   The next time you are living with it, I encourage you to direct it to a good purpose.  I began to put my grief-fuel into curing Alzheimer’s disease.  I found that the more I volunteered for CART, the more I learned about Alzheimer’s.  The more I learned, the more I could contribute, and the more I wanted to share the story.  I met the researchers who received the CART grants funded by my birthday donation. I learned what sparked their research. I learned what motivated them.  I shared these things when I visited Rotary clubs, and they inspired individuals and clubs to new levels of support.  On these visits, I met people traveling their own Alzheimer’s journeys.  They shared their stories, I shared mine. And as I shared my stories I saw that they gave others comfort.

On December 6, 2014, I launched The Perfect Thing  blog website.  As stories from my family’s Alzheimer’s journey came to mind I would share them on the blog.  Even thought I told these stories out of chronological order, people really connected with them.

Which brings me to February 2017.

I am very proud that The Perfect Thing has matured.  Our first two publications for families getting through Alzheimer’s will be available in March 2017:  Patterns at Hand & Patterns at Time

I invite you to continue to share my journey of supporting Alzheimer’s families and curing Alzheimer’s with me.  My sense is that I’ll be on this road for a long time to come.

Your Friend on the Journey,

Barbara Ivey

My cautionary tale about self-care

ALZHEIMER’S, YOU AND YOUR HEALTH


“How long has it been since I’ve seen you Ms. Ivey?” my Neurosurgeon asks.

“Three years,” I reply.

“And what brings you here today?”

“My sciatica has, uh, encouraged me to reconsider your recommendation for spinal surgery.”

“But first you had to tough it out on your own for three years?” he asks.  

“Now is a more reasonable time in my life to consider surgery.”

I try to remember what things were like three years ago.

Back then, Mom attended the Adult Day Program three days a week. Mom cried when she was sad, and cried when she was happy. Mom shadowed Dad during the day, sun-downed at dinner time and wandered at night.

Back then,   Dad was burning out.   Dad did all the shopping, prepared all meals, selected Mom’s outfits each day, and assisted her with bathing and brushing her teeth.  Dad did the laundry, cleaned the house, maintained the yard, and more. Dad had accidentally lost fifty pounds since the year before, misplacing it as he scurried from event to event.  Dad’s doctor wanted Mom to attend the Adult Day Program five days a week in order to give Dad a break from care giving.

Back then I had one year to go to my fiftieth birthday, and had yet to find a graceful way to welcome it. Each misplaced pen, each forgotten to-do I interpreted as the prelude to my own imagined Alzheimer’s.  I tried one therapy after another seeking relief for my back, as I received alarmed calls from Dad reporting Mom’s fainting spells, missing wedding ring, misplaced glasses and other daily adventures.

The three years since have been a blur of grief, loss, survival and sciatic pain.
 
“Well, let’s hope that there is still something we can do to relieve the nerve now.”

I say a prayer that there is.  I add, “Lord, thy will be done.”

Are you good at setting boundaries?  How do you balance your self-care with the care of your Alzheimer’s Loved One?  Which is easier for you? Which requires more effort?  How can you balance the two and be at peace about your choices