The Last Dance: Facing Alzheimer's With Love and Laughter

By Ann McLane Kuster, David Broder and Susan McLane

Through twenty-five years in the New Hampshire Legislature and a run for Congress in 1980, Susan McLane advocated for the mentally ill, for welfare mothers, for dignity in dying. She fought to save the environment, preserving lakes and protecting wildlife. A tireless advocate for women in politics, raising funds and recruiting candidates, she made a difference in the lives of others. The Last Dance is this family's story about learning to "swim in the deep end of the lake" when the woman they all love best, their matriarch, Susan "Susie" McLane, slips away, one day at a time, to Alzheimer's disease.

• Language: English
• Publisher: BookBaby
• Release date: Sep 5, 2016
• ISBN: 9781483580555

Book preview

Kuster

PART ONE

FALL 2001

CHAPTER ONE

CHRISTMAS NIGHTIES

WHERE WE LIVE, the world turns a different color for every season. Autumn is filled with brilliant reds mixed with bright orange and yellow. The sky peeks through with a dazzling blue. It’s beautiful, and sometimes overwhelming, like life, I suppose.

This is the story of a life filled with color, brilliant, bright, dazzling, and sometimes overwhelming. My mother, Susan McLane, has lived a beautiful life, like a party, with a long, slow dance at the end. Nobody wants the party to end. Every life is a story worth telling. This is her story, the story of her last dance.

Welcome to fall in New England, filled with color. One last big splash, before the leaves fall off the trees, the frost comes and the temperature drops until spring. For all its beauty, fall is a sign of the end of life. For every time, there is a season. This is her season.

You see, my mother has Alzheimer’s disease. Every day for the past year when someone on Main Street or in the State House has asked, How’s your mother? I have tried to find the words to tell her story. She’s doing fine, but have you heard? She’s having trouble with her short-term memory. Then a few months later, I would try, Oh, thank you for asking; you know she’s headed toward a diagnosis of Alzheimer’s. And then finally, simply, My mother has Alzheimer’s disease.

What are the right words? Is it like cancer, The doctors have detected Alzheimer’s? or a cold or flu, She’s had a bout with Alzheimer’s? Gradually, I began to realize that my mother needed a word to describe what was changing in her world. Alzheimer’s is the word that she has chosen. Dementia is just too creepy. So her perception has slowly become our reality.

My mother has led the way, telling friends and strangers alike, You know, I have Alzheimer’s. In May 2001, at a tribute to the McLane family, honoring three generations for community service, she turned to our friend who was hosting the dinner.

Ruth Zax, she said, what a lovely name. I knew a Ruth Zax thirty years ago.

Ruth responded, somewhat taken aback, You still do, Susan, you still do and she’s sitting right here next to you. The past slowly became the present and the future simply drifted away.

Fall is finally here after a long, hot, dry summer. The kids are back in school, with homework, spelling tests, and soccer practice filling the calendar and our life. How did my mother manage all this with five children?

When we were growing up, our lives revolved around a poster-sized calendar hanging in the kitchen, with music lessons, dentists appointments, PTA meetings, and the League of Women Voters all vying for her time and attention. All summer long, I have been thinking about my mother’s amazing life, from eighteen-year-old bride to candidate for Congress, all while raising a large family and serving twenty-five years in the New Hampshire Legislature.

My mother is an avid birder with a lifelong devotion to the environment. She is a born-again feminist committed to reproductive choice for all women and dedicated to the notion that a woman’s place is in the house—the State House and the White House. She is an advocate for the mentally ill, the poor, and the disadvantaged. She is a gourmet cook who entertains effortlessly and loves nothing more than good food, cheap wine, and stimulating conversation.

But now my mother’s life is changing. Her world is shrinking in both time and place. Gradually, over the past eighteen months, she has wound down her commitments, slowly letting go of the endless round of boards and committees, speeches and meetings. Week by week, she has slipped into the past, letting go of the future quietly, effortlessly, peacefully.

Susie’s world began to change in December 1999, with the Christmas nighties. With a husband, five children, four in-laws, and eleven grandchildren, Christmas has always been a big production. Over the years, her gift giving has evolved from individual presents for each person to similar presents for many.

My mother’s favorite tradition is the Christmas nighties. For the past fifty years, every Christmas Eve before the reading of The Night Before Christmas, the children would open one present. Year after year, filled with anticipation and excitement, the present was always the same, nighties for the girls and pajamas for the boys.

With eight granddaughters in five years, the nighties came to symbolize for my parents everything that was good in the world at Christmas. Susie loved the scene of the adorable little girls in their new nighties lined up on the couch as Malcolm read The Night Before Christmas. Pictures were taken. Memories were made. There was peace in Susie’s world. The Christmas nighties made her happy.

So in August, when she saw cute cotton nighties on sale, Susie bought eight. Then in November, when she came across the traditional plaid flannel nighties, my mother bought eight again. Except this time, she did not remember. When she found both sets of nighties in the back of her closet, we wrapped them up and warned everyone to prepare the girls for lots of nighties.

The problem was that the precious little girls were now teenagers and they did not want any nighties, let alone two apiece. Susie’s world had changed once again. It turned out that teenage girls sleep in boxer shorts and T-shirts, just like the boys.

My sisters discussed at length whether to confront the nightie issue with Susie. We all engaged in the perennial Christmas debate about whether a present is designed to please the person receiving it or, more likely, the person giving it.

But this time, I realized that the question simply did not matter anymore for our family. My mother did not remember, nor did she care. In her changing world, life is beautiful, and sometimes overwhelming.

In the end, my sisters and I realized that there were no Christmas presents for any of us. So we reminded the girls to be polite and appreciative to Susie when the nighties were opened, then later to give them to the three of us and our sisters-in-law. Everyone was happy. Susie was delighted that on the eve of the new millennium, the world was once again at peace, filled with Christmas nighties.

New Year’s Eve 2000 came and went, without a whimper from the Y2K bug. But our lives started to change, in subtle and sometimes mysterious ways. When we were young and our big old house in Concord was filled with the delightful chaos of children’s busy lives, we were used to our mother never finishing her sentences. The phone would ring, the dog would bark, and she would trail off to another thought, leaving us standing in the kitchen wondering what she had wanted to say. In later years, when my mother was in the legislature, serving as chair of the House Ways and Means Committee and tackling the tax structure of the State of New Hampshire, she was often in another world.

But now her mind would trail off to another era, another time in her life. The present became more and more of a challenge. She could not remember names anymore, the hallmark of a good politician. She seemed to prefer the past.

Finally, in late February 2000, I sat down on the couch at our ski house in Jackson and looked my mother right in the eyes. It seems so simple now, but at the time, it took all my courage.

With tears in my eyes, I asked her, Momma, would you like to see a doctor to talk about your memory loss?

Her response was like that of a child: Oh, could I? Yes, please, I would like that very much.

I wondered if she even knew that a doctor might help her. Then I realized that I didn’t know either, but I also knew that we needed to find out.

CHAPTER TWO

ROLE REVERSAL

IT WAS EARLY SPRING of 2000 after my parents returned from a trip down the Amazon, when we finally went to see a neurologist. Sitting in the doctor’s waiting room with my mother for the first time in thirty years, I was suddenly aware of the role reversal. In the doctor’s office, she sat up on the examining table as I watched from a chair by the desk.

The doctor performed a series of neurological tests, asking my mother to touch her finger to her nose and to walk a straight line. He reviewed the results of her MRI and EEG, explaining to us that she had suffered a minor stroke, which could be the cause of her short-term memory loss.

The doctor asked my mother if she remembered meeting him