Thursday, February 14, 2008

Happy Valentine's

John and Mary have been married for fifty-three years. Mary has Alzheimer’s Disease and lives in an Alzheimer’s Care Facility. John visits her every day. Every day, Mary does not know who he is.

Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.

As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”

She accepts the lovely rose and her favorite chocolates with polite pleasure.

He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.

She swats at him and screams.

“Mary, I’m your husband. I’m John, your husband.”

Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.

“Get out!” she yells and covers her face with her hands.

“I love you, Mary. I’m your husband, John. Look at me, I love you.”

He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.

Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”

After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.

John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.

To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!

John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship---

She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?

Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.

He has a box of chocolates. Her favorite. Would she like one?

And go from there.

Lisa Genova, Ph.D., author of STILL ALICE,

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Monday, February 4, 2008

The Beginning

I've started writing my next book, a nonfiction collection of conversations with people in the early stages of Alzheimer's Disease. Here's an excerpt from the Introduction--- Please feel free to comment. I'd love to hear what you think!

Alzheimer’s disease.

Now close your eyes. What do you think of? Who do you see? I see an eighty-five-year old woman with short, white hair, wrinkled skin, and polyester pants. I see her forgetting when she ate breakfast and when she was born. Forgetting where the bathroom is and where she lives. Forgetting the name of the United States President and the names of her children. I see her forgetting her own name. Forgetting me. I see my grandmother.

You might have imagined your own grandmother. Or your elderly parent. Maybe you don’t know anyone with Alzheimer’s. Maybe you imagined Gena Rowlands in The Notebook or Julie Christie in Away From Her.

Most of us know what Alzheimer’s disease looks like. Or do we?

Like most people who come to know Alzheimer’s in a loved one, I’ve read and learned a lot about this disease, from the molecular and clinical to the self-help and how-to-care-for. But for the most part, what we know about Alzheimer’s is gleaned from experience with elderly people diagnosed well into the progression of this disease. Because we as a culture expect eighty-year-olds to be normally forgetful, because retired grandparents are no longer accountable to corporate bosses, because they don’t have to produce a certain number and quality of widgets each day, because they might be widowed and living alone with no one to regularly witness the full extent of what is happening, because it is far easier to deny what is happening well after we suspect it or even trip over it, we don’t usually see Alzheimer’s in its beginning.

And unfortunately, once this disease marches past the beginning, we can no longer really know what that beginning was like. Beyond the beginning, clogged synapses, faulty neurotransmission, inflammation, and cell death take the upper hand. Beyond the beginning, those parts of the brain that mediate memory and language and that inform awareness and identity become increasingly inaccessible. People with Alzheimer’s who’ve deteriorated past the beginning stages can no longer remember the recent time period of their personal history that was ‘the beginning’. They can’t describe what it feels like to have Alzheimer’s Disease because those communications skills aren’t working. And more confounding, they may no longer be capable of understanding that they even have Alzheimer’s disease.

We know what Alzheimer’s disease is like from the point of view of the tireless, loving caregiver. We know what it is like from the point of view of the Hollywood director. But, what is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? What does the face and voice of early-onset Alzheimer’s look and sound like?

Lisa Genova, Ph.D., author of STILL ALICE,

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Location: Chicago, Illinois, United States

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

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