The Last Dance, Facing Alzheimer's with Love and Laughter

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NH Public Radio interview, 3-8-05    
Concord Monitor, 2-15-05    
Union Leader, 2-15-05    
New Hampshire Sunday News 10-24-04    
Rebecca Rule's, "Book Marks," 11-14-04    
Portsmouth Herald, 11-18-04    
Bar News, 11-19-04    
In the News

From Concord Monitor, Feb. 15, 2005

Remembering the example she set Family, friends pay tribute to McLane

By AMANDA PARRY, Monitor staff


Ann McLane Kuster leans on her father, Malcolm McLane, at the funeral of her mother, Susan McLane, yesterday in Concord.
(Photo by DAN HABIB / Monitor staff)

Former state legislator Susan McLane was known for many things: Her years in the State House, her tireless advocacy of women's rights and environmental protection, her mentoring of young women in politics. At her memorial service yesterday, her children and grandchildren shared another side of her. The side that made up songs for family gatherings, that naughtily spit cherry pits over the side of a houseboat, that snuck her grandchildren chocolate bars after a day of hard skiing.

Well-wishers filled St. Paul's Church yesterday afternoon to pay tribute to McLane, who died Sunday at the age of 75 from Alzheimer's disease. Gov. John Lynch, former governor Jeanne Shaheen, U.S. Supreme Court Justice David Souter and New Hampshire Supreme Court Chief Justice John Broderick were among the people who attended the service. Family members and friends shared stories and memories of McLane, from her early years growing up on the campus of Dartmouth College, where her father was dean, to her final years living with Alzheimer's.

Time and again, people spoke of the example McLane set for others. To know her was to learn something - about the world, about yourself, about how both could become better. And while she is gone, those who knew her still have the opportunity to make a difference, said the Rev. David Jones, pastor of St. Paul's. "She'd like to know that when we leave this plane, we will have made as much difference as she did," Jones said.

There was no need to recite McLane's many accomplishments. Most people in the church knew of her 25 years in the Legislature representing Concord, first as a representative, then as a senator. They knew of the 436 bills she wrote or co-wrote, bills about everything from conservation to mental health care. They knew of her 1980 run for Congress - she lost to Sen. Judd Gregg - and of her friendships with everyone from the Clintons to "the two Davids,"Souter and Washington Post columnist David Broder. One of the laws she co-wrote was the law regarding living wills. It allows people in New Hampshire to refuse life-sustaining medical treatment. Because of this law, McLane was able to die the way she wished, said her daughter, Ann McLane Kuster.

When her throat muscles stopped working two weeks ago, a common condition in the last stages of Alzheimer's, her family knew she didn't want to be put on a feeding tube. Instead, her husband, Malcolm, five children and 11 grandchildren stayed by her side, holding her hand and sharing memories. After 12 days, she passed away.

It was one day before the 10th anniversary of the death of her twin sister, Sally Hudson, from cancer. McLane had nursed her identical twin through her last days, singing with her the ski songs the two were raised on. Hudson, who skied in the 1952 Olympics, had helped McLane in her run for Congress, sitting in on several of her 4th of July parades.

Because of all that McLane did, because of her family and the wonderful memories she made with them, she surely left this world with no regrets, said her brother-in-law, Bob Kilmarx. Kilmarx described an impish and mischievous little girl who became an honorary member of a Dartmouth fraternity and once pulled an entire biology class out of the classroom to show them a woodpecker.

Her daughter, Debbie McLane Carter, told of a mother who offered banana splits to children who distributed leaflets for her favorite candidate in an election. As the self-appointed neighborhood ski teacher - she started a school in White Park that grew to 200 students - she also told students it was okay to fall down. "She said the more you fell, the harder it meant you were trying," Carter said. And her grandchildren took turns talking about a grandmother who let them finish off the ice cream in the carton and offered each $100 if they could get to 21 without smoking.

The songs sung during the service, all picked by her family, reflected McLane's outlook on life, from "Joyful, Joyful, We Adore Thee," to "For the Beauty of the Earth." Her grandchildren managed to sneak in one of the skiing songs McLane and her sisters, Sally and big sister Mary, used to sing. Instead of singing it, they recited "Skier's Requiem," which starts and ends with the verse:

"Come, fellows, just buckle my boards on,
My ski poles stand at my side;
I'm off for the Lord's own snow fields,
I'm off for the Last Long Ride."
You can lie in your musty old graveyards
Enjoying your eternal rest,
While I ski a trail down some heavenly vale,
Till the last sun sets in the West."

( Amanda Parry can be reached at 224-5301, ext. 307, or by e-mail at aparry@cmonitor.com)


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From The Union Leader/NH Sunday News News - February 14, 2005

Friends, family recall McLane's grace, energy

By CAROL ROBIDOUX, Union Leader Staff

It's difficult for those who knew former state Sen. Susan McLane in her prime to speak of her now, in past tense. "I remember her as so alive, so full of energy and humor, so willing to listen to whatever problem you had and try to find a solution," said long-time friend and colleague Beverly Hollingworth. "It's hard for me even to say the words, 'She was.'"

McLane died yesterday from Alzheimer's disease at 75, after 12 days in hospice care. She died with all the grace and dignity she afforded others by way of her support for the licensing of hospice care across the state, said her daughter, Annie McLane Kuster.

Liz Hager, who will speak during McLane's memorial service today at 4 p.m. at St. Paul's Episcopal Church in Concord, said she will talk about her friend's passion for life. "She was passionate about that big family of hers, about the people who lived on welfare in our state, about birds and flowers and children," Hager said. Hager met McLane 35 years ago, at Concord Hospital. Hager was eight months pregnant, and McLane was on Cloud 9. "This woman came bouncing out to where I was standing, saying, 'Come see! Come see the most beautiful baby in the whole world, my grandson. His name is Erik Malcolm McLane. He's so beautiful. So perfect and wonderful.' That was my introduction to her enthusiasm," Hager said.

Over the years, the two women would come to share so much more - including office space during their time in the New Hampshire Senate. "It's been a wonderfully entwined generational thing. Susie was exactly 15 years older than I was, and her daughter, Annie, was exactly 15 years older than my daughter," Hager said. Hager said she'd spent the last six nights by McLane's side during dinner hour, giving the family some respite, and allowing the two friends some quiet moments together. "They called me at four (Sunday) to tell me she'd died. It was just about supper time. I felt like I had to go, to give her a kiss and hold her hand, just one more time," Hager said.

Another long-time friend, former Gov. Jeanne Shaheen, said she will remember McLane as someone who spent her whole life fighting for those who didn't have anyone else to fight for them. "The elderly, children, the sick, the disabled, the poor - she did so many good things in her lifetime," Shaheen said. "New Hampshire is really a much better place because of her service. "She called McLane a pioneer for women in politics. "She was a true role model. And even though she was a Republican and I was a Democrat, she helped me in any way she could," Shaheen said.

Beyond family and politics, McLane had a deep regard for nature. "Her losses, in terms of the Alzheimer's, really came late in the game. She got a lot done in these last 12 years," said Richard Moore of the New Hampshire Audubon Society. "The slogan she promoted at the Audubon Society was, 'For the love of children and birds.' That certainly was not all Susan was, but it was part of her."

McLane's daughter said yesterday that she sensed her mother never lost total recognition of those she'd cared most for in her life, despite the ravages of Alzheimer's. "She couldn't speak in the end, but the best expression a friend gave me was that she knew she was with someone who loved her very, very much. Even in the end, she'd open her eyes and have this extraordinary compassion for us in her face; that's what blew me away most of all," Kuster said.


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From: New Hampshire Sunday News, October 24, 2004

Sharing Lessons, Saving Memories

by Shawne K. Wickham

    Thus far in our journey, my mother is inclined toward using the time left to get her affairs in order and to prepare herself emotionally for "the long fade." When I asked her recently if she was worried about her future, she said with supreme confidence, "No, I have read about Alzheimer's. The thing about Alzheimer's is that you don't think about the future. So, you don't worry about the future."
    When my mother said these words, I realized that I could let go of my worries, too . . . I will live with her in the moment, appreciating the quality of our life together. Our time together will be her parting gift to me. Capturing her story will be my parting gift to her. We will savor our last dance together.
    --From The Last Dance by Ann McLane Kuster and Susan McLane

She has been one of New Hampshire's leading political ladies, the matriarch of a proud and active family, and a philanthropist who ardently embraced her causes, from women's rights to conserving New Hampshire's natural environment.

Now Susan McLane has a new role, thanks to a poignant memoir penned by her youngest daughter: The face of Alzheimer's in New Hampshire.

The Last Dance: Facing Alzheimer's with Love and Laughter, is a book by Ann McLane Kuster of Hopkinton, a prominent lawyer and lobbyist. It is published by Peter Randall Publisher LLC.

Kuster lets the readers into the heart of her large and loving family; it's a place where laughter mixes with tears. And in its cast of familiar characters and events, it is a truly New Hampshire tale at heart.

Kuster said the book started out three years ago as a personal project, a way to capture her mother's life story and political career before her memories disappeared. "It was more or less a family oral history," she said.

She began meeting every Friday for tape-recorded sessions, first with just her mother, later joined by her father, Malcolm. And as the project progressed, Kuster began to realize they had important lessons to share.

"This disease teaches you to be living life in the moment. There is no future, there is no past. You have to appreciate the present."

In the end, she said, "We hope our tears and laughter can help other families come to terms with the joys and the sorrow."

Their sessions began in early September 2001; the terrorist attacks seemed to only reinforce the fragility of their time together.

"To experience Alzheimer's disease is to watch someone you love so dearly lose the future," Kuster explained. "Both the future and the past slip away at the same time in such a subtle way that you are blessed by every moment you have together."

Kuster recalled going to a bookstore to find resources to learn about her mother's disease. "I can remember sitting down in the aisle and pulling the books down one by one and weeping. They were so sad. They weren't accessible to me. I could not even buy them.

"Most everything that has been written about the disease is the very late stages of the disease, where families haven't really dealt with it until it's too late, and then it is very depressing."

But from the start, her mother has faced her illness with courage and grace -- and humor. McLane began a speech at a retirement dinner for the president of the World Affairs Council by remarking, "I have Alzheimer's. Otherwise, I would go on for half an hour about how wonderful Dave Larsen has been for 35 years!"

Kuster knows that part of the power of the book is that it's about someone that so many people in New Hampshire have known for decades, whether as State Senator and one-time U.S. Congressional candidate, or as active bird-watcher, skier, hiker, and world traveler.

"People say to me I just can't imagine this happening to her, as though because she was so vibrant and because she was so active, that somehow this disease couldn't hit her," Kuster said. "And the reality is, for her to literally lose her voice, to lose her speech, is to say this can happen to anyone -- and it will.

"This disease is the great equalizer."

Susan McLane is now a resident of the Havenwood nursing home in Concord. Kuster said her mom uses a wheelchair for mobility and can no longer speak.

"The last phrase she could say right to the end was, 'I can't speak but I can listen.' That was a beautiful thing, and we learned she does want to listen."

When someone visits, Kuster said, "Her face lights up, she kisses you on both cheeks and you just are at peace."

The night The Last Dance came out, Kuster at once took a copy to her mother's bedside. "I crawled right into the bed and I showed it to her. And she was so proud and so happy that her story will be told."

Kuster said the title came to her early on. "It was a metaphor, for me, about that feeling of the last dance, where you know the evening will end, but you don't want the music to stop."

"Intellectually, I can understand, of course, her life will end. We're losing her every day.

"But the feeling will not end. And the love in our hearts goes on."

Ann McLane Kuster will speak at the annual conference of the Alzheimer's Association of Vermont and New Hampshire on Nov. 6, which is open to the public. For information, visit www.alz.org/vtnh. For local book signings and author appearances, visit www.thelastdance.org.


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From: The Concord Monitor, Becky Rule's Column, "Bookmarks," Nov. 14, 2004

Unafraid to die, a former lawmaker teaches life lessons

Ann McLane Kuster's book about her mother's experience with Alzheimer's is an inspiration.

Recently I heard a comic (or was it a preacher?) note the denial in the phrase 'if I die.'As the depressed 10-year-old in the movie What About Bob? explains to the charming neurotic played by Bill Murray: We are all go-ing to die. What difference does it make, Siggy laments, whether it's tomorrow or 50 years from now, We are all going to die?

Two new books by New Hampshire writers remind us that though death will come, what matters is life, embraced and enjoyed as fully as possible to the end. Two daughters write about their mothers' fatal illnesses in books that parallel one another in some ways, but diverge significantly in this: One mother accepts her fate with grace, inspiring those around her. Another mother succumbs to the stigma of her disease and lives her last years in physical and emotional agony.

The first mother accepts that Alzheimer's will change and eventually take her life, yet she does not give in to despair or self-pity. She carries on: "You know, I have Alzheimer's," she tells friends to explain lapses.

Forthright with herself and others, she continues to experience joy and to give it as well. In The Last Dance: Facing Alzheimer's with Love & Laughter, Ann McLane Kuster simply and candidly tells the story of her mother, Susan McLane's, physical and mental decline against a backdrop of a changing world - Sept. 11, the anthrax scare, war in Iraq, the fall of the Old Man of the Mountain. In 2002, a few months after Susan McLane's diagnosis, Kuster wrote:

    My mother has led a public life, serving for twenty-five years in the New Hampshire Legislature and running for Congress in 1980. Thousands of people know her by name and recognize her face wherever she goes. For years, she felt their pain, advocating for the mentally ill, for welfare mothers, for dignity in dying. She fought to save the environment, preserving our lakes, and protecting our wildlife. She was a tireless advocate for women in politics . . . . She made a difference in the lives of others. She made the world a better place for us all.
    Now her world is changing. Plaques and tangles in her brain blur her memory and slow her speech. Her life is slower. . . . Still she cares about others, sending a birthday card, cooking a meal, solving the tax structure of the State of New Hampshire. She is still making a difference in the lives of others, opening her heart and our minds to aging and Alzheimer's disease, sharing her life story. She is still making the world a better place for us all.

Hard as it is to watch this vital woman - named the Most Powerful Woman in New Hampshire just 10 years ago - lose her memory, her ability to walk, her speech, Kuster sees and embraces the life spark, the Susie, that remains. Eyes still sparkling. Open still to love and nature. Susie learned to live by not being afraid to die.

Kuster describes a moment last spring, Susie in a nursing home. Kuster takes her outside to enjoy the sunshine. The sky is brilliant blue, the leaves deep green, pink tulips and yellow daffodils blooming.

    Everywhere we look, our world is painted shades of green with splashes of bright colors.

    Look up, Momma, look at the clouds, I say, pointing up . . . .
    My mother leans back in her wheelchair and smiles, with a look of surprise. Has she forgotten about clouds? I wonder. What goes on in her mind these days?
    . . . Now Susie seems like a small child, marveling at the clouds and the beauty of her new world. I am blessed to share her wonder.
    Momma, look at the robin, I say softly, watching her turn toward the bird hopping across the grass. Then a gray squirrel scurries up a tree. Her head turns again. Her eyes slowly focus. My mother stares in amazement as the squirrel turns to watch her. She listens to a crow cackle from a branch above. Susie is attentive to her world, taking it all in, feeling nature surround her once again.

Here comes the contrast: The second mother, infected with the AIDS virus in the mid-1980s, suffers the final years of her life ashamed. She feels dirty and like a leper. Her husband fears people will judge and reject them. We're too old to fight any discrimination, he tells his daughter. The few who know what's making Mother so sick - the tainted blood from a transfusion at age 66 - must guard the secret.

Nancy Draper of Plaistow held off writing A Burden of Silence: My Mother's Battle with AIDS for 13 years after her mother's death, out of respect for her father's wishes. A year ago, he changed his mind and gave her the go-ahead, though his name does not appear in the book. The stigma associated with AIDS has diminished, but it has not disappeared. Terrible enough to be sick with an incurable disease, but even worse to suffer in silence out of fear for how others will judge you.

Draper imagines that if her mother were here today she would say:

    I'm sorry I didn't tell you that I had AIDS. I was scared of what you might think of me. I felt lonely and ashamed. Please forgive me for keeping this secret inside. It hurt me to do this. I didn't want to, but I feared you might reject me. Every day my heart ached with pain and anguish. Every day I felt like a leper. Every day I wept. I died an emotional death long before I died a physical death. . . . If you meet someone who is infected with this tragic disease that killed me, please hold them and support them. They need to be touched, hugged, and accepted, not rejected. No one should have to suffer in silence because of AIDS.. . . Wipe the tears from their eyes. . . . Listen to their words of fear and hold them near.

Nancy Draper's mother suffered for years with unexplained symptoms. She was never notified that the blood she'd received during heart surgery might have been contaminated. She was treated by doctors and psychologists with little AIDS experience. She hid her diagnosis from friends and family. She carried the burden of fighting her own fear as well as her symptoms. In A Burden of Silence, Draper pays tribute to her mother by chipping away at the stigma of AIDS and the hateful myths as well.


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From: Portsmouth Herald, November 18, 2004

Politician's "Last Dance"

by Genevieve Giambanco

PORTSMOUTH--Shortly after Susan McLane, a New Hampshire politician, was diagnosed with Alzheimer's disease in 2001, her daughter, Ann McLane Kuster, set out to write her mother's biography.

The Last Dance: Facing Alzheimer's with Love and Laughter was recently released, and at Ocean National Bank Wednesday night, Kuster signed copies of her book.

Although McLane did not attend the event, Kuster, a Concord-based lawyer and resident of Hopkinton, reunited with old friends who have known her mother throughout her life and her political career. McLane served in the state Legislature for 25 years and ran for Congress in 1980. She was an active environmentalist, promoted women's rights and was a "strong proponent of tax reform," Kuster said. McLane served on the national board of NARAL Pro-Choice America, presided over the Audubon Society of New Hampshire and involved herself in community and charitable activities such as the New England Ski Museum, her daughter said. In 1994, McLane was recognized as the most powerful woman in New Hampshire during her last but "most successful term" as the vice president of the N.H. Senate, Kuster said. At that point, Kuster said, she realized she needed to start the biography before her mother's condition worsened. In the fall of 2001, she interviewed her mother on what she called "Fridays with Susie" for first-hand accounts of her life and career. The stories that Kuster gathered that season eventually yielded Part I of The Last Dance, in which her mother provided a "candid reflection on her los of memory" due to those moments when she couldn't complete the stories of her past.

Kuster also captured her mother's reaction to the disease.

"She was very candid about coming to terms with the end of her life," Kuster said.

Part II is about Kuster's perspective of her mother's worsening condition. McLane now resides at Havenwood Heritage heights, a retirement community in Concord.

"The person we used to know is gone." Kuster said. "We've lost her.

"It's as though she's in heaven, but you get to visit," she added.

A third of the proceeds from the book sales goes to Compass Care, a day-care facility for the elderly and those with Alzheimer's.

Laurie McCray, a nurse from Portsmouth, said she came to the book signing to learn about McLane.

"I'm curious to just read this personal memoir," she said.

The Last Dance was released on October 15 and is available at book stores and online at www.enfieldbooks.com.


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From: Bar New, 11/19/2004

Women's Bar Honors Ann McLane Kuster

By Beverly Rorick

ANN MCLANE KUSTER, a shareholder and director at Rath, Young and Pignatelli, PA in Concord, received the Marilla M. Ricker Achievement Award at the Annual Fall Reception of the NH Women's Bar Association on Oct. 28, 2004. Kuster is a sustaining member of the NHWBA, served as chair of the Bar's Gender Equality Committee and is a member of the ABA's Commission on Women in the Profession.

Kuster was named "New Hampshire Leader for the 21st Century" by Business New Hampshire magazine in 2000 and has served on numerous boards and committees.

Admitted to the NH Bar in 1984, Kuster is a graduate of Dartmouth College and Georgetown University Law Center. Kuster's latest--and one of her most noteworthy--contributions to society is the book The Last Dance, an account of her mother's battle with Alzheimer's. Kuster's mother, Susan McLane, a former state legislator and a tireless advocate for women, the mentally ill, the environment and for dignity in dying, was once considered New Hampshire's most powerful woman. Her influence and recognition were nationwide.

Kuster's loving and revealing account of the "slipping away" of her mother "Susie," and of the effect upon family and friends--and the light shed by her book upon this illness that affects so many elderly Americans--is truly amazing. Kuster herself is so fully involved in life at every level, with her work, her political activities, her family, yet she spent (and still spends) a great deal of time with her mother. Every Friday for many months she recorded their conversations. The resulting work is a touching, educational and rewarding book.

Marilla Marks Ricker, for whom Kuster's award is named, was the first woman to petition the New Hampshire Supreme Court for the right of women to petition to practice law in New Hampshire. (Ricker's Petition, 66 NH 207 (1890.) Ricker won the landmark case, but she never petitioned for herself and thus was never admitted here.

For a brief review of Kuster's book, see the Bar News issue for October 22--and for a more thorough description and directions for purchase, visit Kuster's Web site: www.thelastdance.org.


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