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 :
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.
Midlifemuse
Stop by for a visit over at my home blog, Midlife's A Trip.
Comments
this is very touching
Susan is lucky to have you. Thank you for this tender post.
~~ Contributing Editor, Mata H. also blogs right along at Time's Fool
Thank You Mata
i hope that sharing the story of my friend will help people understand the sad journey of early onset Alzheimer's.
By the way, I'll sent a Facebook friend invite to Kris Bakowski and will post the link to her profile when I hear back from her. It'd be great for BlogHer readers to connect with her on her blog and Facebook.
Have a great weekend!
That made my heart hurt but in a good way
Susan is indeed lucky to have you. But I feel for you too. I've had my best friend since I was 11 (I'm now 47) and after reading this, I'm gonna call her up for a hug. We don't see each other nearly often enough but you've inspired me to start writing down more of my precious memories of my life with her.
Visit me at "The Pug Who Thinks Too Much:" http://pugsthinks.blogspot.com/
Great Plan
Love your gameplan to call your best friend with a "hug". And I bet you really enjoy the walk down memory land about your friendship. Are you going to share your "memoirs" with your friend--maybe as a birthday gift? Just a thought!
Aren't we lucky to have lifelong friends?
Visit me at Midlife's A Trip.
Sad...and scary
My mom has Alzheimer's and I keep waiting to wake up and hear, "Scientists Cure this Awful Disease!" Because we call it "memory loss," but it really is something pretty close to insanity when nothing makes sense any more. And now anytime I can't think of the word for "that yellow thing with lead in it that you write with," I of course worry I'm heading the same direction. I wish every good bit of luck to your friend, and to you, and to all of us! Come on, science. Hurry up!
Alzheimer's Is Like Insanity!
What a great observation! I've often thought that describing Alzheimer's as just "memory loss" doesn't come close to describing the devastation of this disease on the person going through it and the people around them who can't even understand what the journey is like. Unfortunately, calling it "insanity" fits like a glove -- at least for me on the outside trying to look in on what's happening with my friend. Thanks for sharing this, Lenore. And I'm joining in that chorus for science to find a cure.
Visit me at Midlife's A Trip.