On Becoming A Memory Keeper

8 years ago

It was back in the 1960's when I first became aware of memory loss.   I was visiting my cousins in Cleveland. We were watching out the window as our great-aunt Clara drove up. Aunt Clara was noticeably forgetful, even to us kids. We called it "senile" back then. I recall how we would snicker about her little memory lapses--behind her back, of course.

And there was my great-grandmother who used to ask the same question every 10 minutes as if she hadn't asked it 20 times before. Even back then it was clear to my child's mind that there was something incredibly sad about an adult being completely unaware of forgetting a name, a place -- a face.

It was many years before I had to confront the "senile" issue again. I was in my 30's when my mother sustained a closed-head injury and began to forget things. It got so bad that she would have dozens of lists written in a steno pad to remind herself about how to navigate through just one day. It didn't take long for me to recognize that something was seriously wrong. I bought a book on Alzheimer's in 1987, the first of many books I would read on the various forms of dementia.

For most of my life, I've thought of Alzheimer's as a condition of old age.  By the time I hit midlife, I'd dealt with my mom's dementia and considered myself somewhat knowledgeable about memory loss. That is until what I thought I knew got turned completely upside down when my best friend was diagnosed with early-onset Alzheimer's.  

"Susan'', as I'll call her here, is 57, the same age I am.  We met when we were 6 years old and I still remember that day.  My dad was talking with her dad over our backyard fence with his white convertible parked a few feet away.  I didn't see anyone in the car until suddenly a little girl popped up from the back seat with a big wide grin and long-ponytail.  I smiled back and that was the start of a friendship that's lasted over 50 years.

We went to grade school together and always stayed close even though we went to different high schools and colleges. But physical distance never bothered us.  Over the decades Susan and I talked almost every week, laughed, counseled each other and shared the ups and downs of our lives.  Trust me when I say it, we've been friends through the best and worst of times.

I remember when my father suffered a stroke and Susan flew in to visit him.  We drove out together to the nursing home where Dad was for several months. As we sat with him in the dining room, two old women caught our attention.  They were leaving the dining room together in their wheelchairs like a little caravan.  Susan looked at me, smiled and said:

That's us when we get old.  Let's promise we'll grow old together.

I never imagined we'd have a problem keeping that promise because of Alzheimer's. According to the Mayo Clinic:

Of all the people with Alzheimer's disease, only 5 to 10 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease. Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's very uncommon. It is more common to see someone in his or her 50s who has the disease.

Susan was diagnosed in her early 50's.  She's been in a clinical trial and on the medications now regularly prescribed to slow the degenerative process of Alzheimer's.  It hasn't helped.  It seems that the early-onset form of the disease is more toxic -- at least it is for Susan.  But the impact of early onset Alzheimer's varies from person to person as I found out when I stumbled upon the Dealing with Alzheimer's blog of Kris Bakowski.  She was diagnosed several years ago at age 46 and is still blogging -- and on Facebook.  

Susan, on the other hand, can't work or drive any longer.  More and more there are people she no longer recognizes.  Although she was a talented communications professional for years, now it's difficult for her to complete a sentence.  

But Susan hasn't forgotten we're friends.  When I call she recognizes my voice.  Even though she can't always articulate her thoughts, I fill in the gaps in our conversation with the memories I know bring a smile to her face like how we :

  • Played together with Barbie dolls -- the first generation.  Susan still has all of hers packed away.
  • And screamed in the car on the way to school as the Beatles sang on the radio. She liked Paul.  George was my favorite.
  • Went to basement parties back in the 60's.
  • Saw the Temptations live on stage at state fair -- more screaming.
  • Spent great summers in Detroit.
  • Cried the day JFK died.
  • Were in one another's wedding.
  • Loved each other's children.
  • Got drunk together while writing my dad's obituary.
  • Hung out on the beach watching the fireworks on the 4th of July.
  • And were always grateful to be friends.

You see, I'm becoming the keeper of the lifetime of memories Susan and I share.  And, Alzheimer's be damned -- I won't forget.


Stop by for a visit over at my home blog, Midlife's A Trip.

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