Tuesday, February 3, 2015

A review of STILL ALICE by Lisa Genova and my family history of Alzheimer's Disease

My family has a wonderful tradition.
It's called Alzheimer's.

My grandfather had it.

He died from complications, otherwise known as pneumonia, when I was in high school.
I remember his striped jean overalls, his love of food, and his twenty questions.
Except each question was just the same.

"What are you doing there?" he'd ask, lathering another layer of red jelly on his toast.

"I'm cleaning out the cabinets." I'd stack dishes on the counter, lined in grime. It took some real scrubbing to remove the black lines Grandma's evidently poor vision had left behind. No one had the courage to confront her on the topic, however.

Grandpa would shuffle over to the sink where I toiled. "Those dishes sure are clean."

"Thanks, Grandpa."

He'd scuffle back to his seat to pick up his toast and I'd turn back to the sink.
A minute would pass. Maybe two.
Then it began again.

"What are you doing there?" he'd ask, jelly catching on the corner of his mouth.

"I'm cleaning the cabinets."

Grandpa would hobble over to the drying rack to inspect my job. "Those dishes sure are clean."

"Thanks, Grandpa."

Sometimes I'd change my answer, simply to have a little variety in the conversation, but mostly we'd repeat the same things to one another.

Sometimes it wasn't clear which one of us had Alzheimer's disease.

Fifteen to twenty years later, my mother started forgetting things.

I love her hair in this picture. Isn't it fabulous?

She needed prompting at family functions, because she couldn't remember her nieces' names.

When I got married over ten years ago, instead of helping me decorate the tables at the reception hall (a task she'd have loved in her prime), she followed me around like a lost puppy.

When my father passed five years ago, and Mom came to live with us, I handed her the phone to call her brother, Donald.

She stared back, a blank look in her eyes.

Then I realized that my father must've been in the habit of dialing the phone for her, then handing over the receiver so she could still give the impression she knew how to perform this simple task.

The many ways he covered for her became apparent in the month she lived with us.
But our home, with the open staircase and the working microwave and stove weren't safe for her.
She'd turn off the lights in the stairway, then head down, falling a couple times a week.

She had a habit of putting frozen vegetables in a metal pan, setting them in the microwave, turning it on high, and walking away.

She moved into assisted living for a year, then memory care for two more.
Now she's in nursing care, a wheelchair, and zip-front clothing.
My name left her lips years ago, but the familiarity in her eyes faded just this winter.

She even lost her love of cookies.
She doesn't even know what they are.

This is why I didn't want to read STILL ALICE by Lisa Genova at first.

But I'm not in the habit of feeding my fears, so I finally picked it up at my kids' school book sale last Thursday.

I haven't put it down since.
Finished it this morning.

I'm so impressed with how accurately Lisa Genova has captured the despair, feelings of helplessness, and terror of the disease.

There's no sugar-coating this illness.
There's no getting better.
Things just get worse.

That's the reality.

I've discovered that most people wish to stay in the dark about this disease.
As long as the sufferers are tucked away in nursing homes, then no one has to look it in the face.
I'm so glad the author drug all the dirty secrets out from under the carpet.

Some people ask me how I can possibly handle the fact that my mother no longer knows my name.

The truth is that little inconvenience doesn't even bother me anymore.
Her mental illness has gotten so much worse than that.

The other unavoidable truth is that I don't have a choice.
I have to face it.


  1. My Uncle is suffering from this and sometimes he is right here with us and other times he is living out a scene from his past. It is hard and can understand why reading about it would be hard

    1. It took a little courage on my part to pick up this book, but it was surprisingly easy to finish.

      I did have to stop and pause at times, because it was so sad--and so true to life.