The Last Dance
A prominent New Hampshire family faces Alzheimer's disease in a very public way, deciding that love, laughter, and painful honesty are the best antidote to the agony of loss. Here are some of the lessons they learned along the way.
By Ann McLane Kuster
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. This is the story of her last dance.
You see, my mother has Alzheimer's disease. At first, a few years ago, when people started asking, "How's your mother?" I would respond, "She's doing fine, though she's having trouble with her shortterm memory." Then it was "Oh, thank you for asking—you know she's headed toward a diagnosis of Alzheimer's." And finally, simply, "My mother has Alzheimer's disease."
She has led an amazing life, from 18-year-old bride to candidate for Congress, all while raising five children and serving for 25 years in the New Hampshire legislature. When I was little, our big old house in Concord, N.H., was filled with delightful chaos, and 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 it was she had meant to say.
Later, when she was in the legislature—serving as chair of the House Ways and Means Committee—her mind was often in another world.
But the lapses that we start to notice in late 1999 are different. Her mind begins to trail off to another era. She can't remember names anymore, a hallmark of the good politician. She seems to be slipping into the past and—quietly, peacefully—letting go of the future.
Finally, in February of 2000, I sit down and look her in the eyes. It sounds simple now, but at the time it took all my courage. "Momma," I ask her, "would you like to see a doctor about your memory loss?"
Her response is like that of a child: "Oh, could I? Yes, please, I would like that very much."
It's early spring when we finally see the neurologist. Sitting in a doctor's waiting room with my mother for the first time in 30 years, I am suddenly aware of the role reversal. In the exam room, she perches on the examining table as I sit in a chair by the desk. The doctor performs a series of neurological tests, asking my mother to touch her finger to her nose and to walk a straight line. He reviews the results of her MRI and EEG, then explains that she has suffered a minor stroke, which could be the cause of her short-term memory loss.
The doctor asks my mother if she remembers meeting him before.
"Did you go to Hanover High School?" she asks expectantly, although he's clearly 20 years younger than she is.
"No," he replies, looking down at her medical record, "we met at my office three years ago."
Then I remember that my mother saw a neurologist when she first lost her sense of taste. I feel compelled to explain her situation to him. "My mother was in politics in New Hampshire for 25 years," I say. "It's no exaggeration that 10,000 people know her by name. There's no way she could remember them all."
Then my mother chimes in. "Would you have recognized me in the grocery store?" she asks. From the look on his face, I can tell that she has scored.
"No," the doctor concedes, "I would not."
Before we leave, the doctor recommends that my mother take an aspirin a day to lower her chance of having another stroke. He assures us that he can't yet definitively diagnose Alzheimer's disease. We walk out of his office relieved and hopeful.
That feeling lasts throughout the summer. My mother goes about her life, adapting to her short-term memory loss. A trick from the campaign trail serves her well. Whenever she runs into people whose names she can't remember, she throws her arms around them and plants a big kiss on their cheek. Her theory is that the people will assume she knows them so well she doesn't need to call them by name. It works every time.
My father, Malcolm McLane—a trusts and estates lawyer who still goes to the office every day—begins to adapt as well. Early on, he was in denial. Whenever I tried to talk with him about my mother's memory loss, he would change the subject. I realize that acknowledging her aging requires him to face his own mortality.
My siblings and I first begin to notice the transition in their roles over the phone. Throughout our lives, my mother was in charge of making the plans. In fact, I rarely spoke to my father on the phone. Slowly, we realize that she's confused about times and places to meet, so we get my father on the line to clarify the arrangements. As time goes on, we chat briefly with my mother and then talk at length with Daddy.
By September 2000, my father is completely engaged with my mother's decline. He accompanies her to the next round of doctor's visits. Slowly, he becomes an authority on aging and dementia.
In May 2001, the doctors pronounce my mother's diagnosis to be "probable Alzheimer's disease." Based on her medical history, a current medical exam, and neuro-psych testing, my mother's memory loss and functional difficulties meet the criteria for Alzheimer's. She accepts the doctor's conclusion graciously, but the rest of our family needs time to come to terms with the news.
In midsummer, my parents tell us they've applied to move to Kendal, a retirement community in Hanover where my father's sister Lilla and brother Charles live. We are all relieved. And my parents sound delighted, as if they've just been accepted to college.
When she fills out a questionnaire for Kendal, my mother responds with complete honesty. Her answer to the question "What are your plans for the future?" is simply, "Nothing. My life is in the past." To "Will you miss your family and friends?" she replies, "No, my family will be here and I have friends, but I can't remember their names." Her words are direct and to the point, without pain or anger or frustration. When asked "Do you have any regrets about your life?" she writes, "No. I am relieved that I did not win when I ran for Congress."
I wonder how many of us, when all is said and done, will have no regrets as we look back on the decisions that have framed our lives. What is it about my mother's life—or perhaps about Alzheimer's disease—that gives her such peace of mind?
I decide to tell her story before her memory slips away completely. I want to understand her past and come to terms, as she is doing, with her present. I also hope her candor about Alzheimer's can open up the world of dementia and aging, just as the book Tuesdays with Morrie did for death and dying.
In August of 2001, I present the idea to my parents. I will bring a tape recorder to their house every Friday, my day off, and get my mother to tell the story of her life. I watch my parents' expressions closely to gauge their reaction. My mother smiles, looking pleased with the idea. My father says simply, with tears in his eyes but hope in his voice, "We'll call it 'Fridays with Susie.' " I know then that the project is meant to be.
On the first Friday in September I arrive, full of anticipation, at my parents' condo in East Concord. They've just returned from a visit with my brother Donald in the North Cascades and then a cruise up the Inland Passage to Alaska. My mother embraces me with a big hug. She's clutching a present in her hands like a child. "I can't believe that I forgot your birthday," she says.
"Don't worry, Momma," I respond. "You just got home from a long trip. These are beautiful," I add, as I open the bag and find three pairs of bright, dangly earrings. But we both know that remembering birthdays is just one more thing in her life that's slipping away.
Before we start the taping, my mother wants to show me her journal from the trip. For years, my mother has kept meticulous journals of her travels—from vacations all over the world with my father to legislative junkets to Japan, Korea, and South Africa. I am pleasantly surprised that she can still recall the details of her days.
The journal is also a testament to my mother's optimism. She was raised on the expression "If you can't say anything nice, don't say anything at all." As her Alzheimer's has progressed, her good cheer has taken on a life of its own. She seems stuck in the superlative. Every meal is the "most delicious I've ever tasted!" (even though she's lost her sense of taste). Perhaps when you can't remember what you had for breakfast, then lunch is the best meal you've ever eaten. Or perhaps she's just living in the moment, finding joy in simple pleasures.
Anyway, the visit with Donald and his family was a success, but the boat trip was cold and rainy and both my parents were sick. On the last day, Momma finally admits in her journal, "A bad night. Malc coughed all night and I was sick. But the morning sun made it all better. The first sun we've seen in 10 days! Our criteria up to now has been if it isn't pouring rain, it's pleasant!" Reading the account, I wonder if maybe with Alzheimer's, misery is the memory that fades first.
We settle down to start the taping. To prompt my mother's memories, I've brought along some old photos. One shows my father schussing across the finish line at Dartmouth Winter Carnival in 1946, the year he graduated. Another is of my mother and her identical twin sister, Sally; one of the little girls holds a Raggedy Ann, the other a stuffed dog.
"I would like you to tell your story," I say. "You can pick wherever you want to start." My mother looks at the tape recorder, then at me. She begins.
My twin sister was the most valuable part of my life. We were together all the time. We didn't fight for years and years. We grew up in Hanover, where my father was the dean of Dartmouth College.
We were ski racers. Sally was on the Olympic team. But I was having my third baby, so I was never in the Olympics.
One of the best things that ever happened to me was to be with Sally before she died. I was retired from the legislature and Malcolm and I went around the world. I would have been so horrified if Sally had died when I was around the world. When I got to California, she was dying of cancer. I couldn't do anything about her dying, except to be there with her. I have discovered that half of the grief about death is guilt. I didn't have any guilt when Sally died. I stayed with her for two and a half months. When she died, I wasn't sad.
"How do you feel about losing your memory?" I ask my mother next.
Well, I feel my life is over. I feel good about the life I've led. But I really feel that life is over now.
My mother had accepted the death of her twin sister. Now she is accepting the fact that her own life—a good, productive, meaningful life—is coming to an end. She is ready to let go. I am beginning to see the wisdom of her philosophy. During the week, I'm an adoption lawyer and a lobbyist in the New Hampshire legislature, and on the weekends, I am a soccer mom. My sons, Zach, 13, and Travis, 10, have games every Saturday and Sunday during the fall. Rather than getting stressed out by my schedule, I try to work on the "Zen of the Soccer Mom," following my mother's example of living in the present and appreciating what life has to offer.
"How did you feel when you were ski racing against Sally?" I wonder.
"I preferred for her to win," she replies. "I had a boyfriend and she didn't," she says proudly, pointing at the picture of my father.
Malcolm was the captain of the Dartmouth ski team. When I was a freshman at Mount Holyoke, I won the Women's Eastern Ski Championships. I was president of my freshman class. Then in the spring I became pregnant, so I married Malcolm. He was a Rhodes Scholar. He said he didn't want to go to England for two years without me. He had been a prisoner of war. He didn't want to be alone ever again. And so, there it was.
So I became a mother, for years and years and years. I grew up at Dartmouth, where there was a difference in how you were treated if you were a woman. Then I had five babies. He didn't use any birth control or anything, so I had five babies. I just did them and that was it. Robin was the oldest. I have not ever said this. Do you think Robin knows that I was pregnant?
My mother looks concerned as she addresses this question to me. "I think she does now," I reassure her, "but not when she was growing up." Momma seems relieved.
The first day, they brought me the baby in the morning. I just looked at her. They said, "You are going to nurse her." I said, "I don't know anything about nursing." And they said, "She's your baby, not ours!" I've never forgotten that. I nursed all my babies.
I nursed Alan right up to when he was nine months old. I had been in bed with two broken legs from a ski accident the year before. When I got pregnant again, the doctor offered me an abortion but I said no. I was pregnant on crutches right up to the time Alan was born.
I'm amazed by my mother's candor. I can't imagine being a mother at 19 or having four babies in six years, let alone being pregnant with two broken legs. "What did you think about mothering?" I ask.
I just felt that the children were it. I remember that I was completely involved with them. I stayed home all day. All I did was cook and care for the children. I walked down to Souther's Market every day because we only had one car until we had all five children. I walked down and back with two of the children in the stroller to buy the dinner every day.
"What would you tell your granddaughters about trying to balance it all?" I ask her.
My mother thinks for a long time before responding. Her answer is succinct and to the point: "Finish college before you get married."
"What would you tell them about working or staying home when the kids are little?" I ask.
She thinks again before answering. "I would say that they should decide that. . . . I think it is their decision, not mine."
My mother's response is just right. With so many more options open to women now, the choices in our lives are daunting. Each one of us must make the decisions that will frame our own life. My mother is satisfied with her choices. Now she is content to let us make ours, to let us dance to our own tune.
Before my second "Friday with Susie," September 11, 2001, shakes the foundations of all our lives. The very sudden and public losses experienced by so many people contrast with our family's daily, incremental losses. When I arrive the next Friday, my mother is looking over a stack of photos. "I can't remember anything," she says. "These pictures are rejects from my journal." She seems lost and confused.
"When you look at the pictures do you remember the trip?" I ask.
"I do remember the trip, but not these pictures," she answers.
"Tell me what this is like for you," I say.
"I feel like the rest of my life is over," she responds. "I don't remember the present, these pictures, for instance. But I remember every one of those pictures all along there." She points to a row of family pictures lined up along the mantel.
"How does that make you feel?" I ask. "Is it sad or scary or frustrating?"
Well, for one thing, Daddy is very good about it. I feel that he has resented me in the past and now he's back to the beginning. I think that until I got to the legislature, he was superior. Then I became a feminist. I did all these things that were equal to him.
Now I'm going back to being nonequal to him, and he appreciates that. He really is very kind and good about it. He hasn't always been good about the legislature and such.
I am struck by her insight. I tell her that I recently ran into her friend, a fellow politician, Bev Hollingworth. "Bev was talking about when she shared an office with you in the Senate," I say. "Daddy wanted you to come home and have a nice dinner ready for him. She was talking about how your public persona was so powerful, so confident, so in charge. Then Malcolm would call and you'd say, 'Okay, sweetie.' You would get off the phone and say, 'He doesn't have any idea what I'm doing all day long.' But Bev said you'd always go, you didn't resist."
My mother looks delighted to hear this story. "That's just how I felt," she says. "I felt very much inferior to him all along. That was the era."
All my life, I've been proud of my mother, both for her own political achievements and for her encouragement of other women in politics. She has recently been telling everyone, "Annie is my replacement," meaning in community service. I indulge her with a smile but know that I want to be present in the lives of my sons, my husband, my parents, my friends. Having shared my mother with politics for over 30 years, I don't plan to stretch myself too thin right now. My talks with her are helping me learn how to make my own way in life.
Later during this visit, my mother becomes visibly anxious. "I want to send David Souter a birthday card," she says. "Malcolm was supposed to bring it to me." She wanders around the living room, searching for a card in piles of notes and invitations.
"No problem," I assure her. "I have a card you can send him."
She seems relieved and carefully writes out a birthday note. "I can hardly write anymore," she says. "But I don't want to miss David's birthday!" I start the tape again and she recalls how she came to be a close friend and confidante of a U.S. Supreme Court justice.
I remember when David Souter was selected to be a Rhodes Scholar. I was very proud of him. He came back from Oxford to Harvard Law School. Then he came to Malcolm's law office in Concord. He became assistant attorney general and then attorney general when I was in the legislature.
I was going to South Africa on a legislative trip, so I went to Washington a few days early for David's Supreme Court confirmation hearing. I sat right in the front row and loved every minute of it!
President Bush's chief of staff and our former governor, John Sununu, had told the national press, "David Souter was a home run for the conservative right." So the national women's groups started to gear up to fight the Souter nomination.
My mother knew better. She talked quietly behind the scenes with her friends in the women's movement about David Souter. Having served with him on the Concord Hospital Board for years, my mother knew his thinking on sensitive health issues. She believed he would support reproductive choice. The women's groups backed down. The nomination was confirmed overwhelmingly. My mother was delighted. She was vindicated in June 1992, when Justice Souter voted in the 5-4 majority in the Casey decision, upholding Roe v. Wade.
I wake up the next Friday morning to rain. The whole world is weeping, still stunned by the enormity of 9/11. When I arrive at my mother's condo, I can tell that she's feeling blue, too. I have rarely seen her in a low mood. As I begin taping, I ask softly, "Tell me how you're feeling, Momma."
I'm feeling a little badly because I can't remember anything anymore. I feel for the first time that I really have Alzheimer's and [she pauses, searching for words] that I can't talk anymore. I went yesterday with Richard Moore down to Manchester. For the first time, I really got the sense that I couldn't speak. On the way back in the car, I got the money for the tolls. That was very special to Richard, who was driving, but it was the only thing I did all day long that was significant.
The trip to Manchester was for an Audubon Society meeting. Just a few years ago, my mother was president of the Audubon Society of New Hampshire. Her leadership and charm were key to a successful multimillion-dollar capital campaign to build a new nature center. Now her greatest achievement is finding the correct change for the tollbooth.
Wondering how she felt when her 25-year legislative career first began, I ask, "What was it like for women in the legislature back then?"
I didn't dare go door-to-door the first time, so I lost. But two years later, in 1969, I was braver. It worked and I won! I remember that the women were better than the men in the legislature. They all came out of the League of Women Voters. The men were not the types that could earn money. They were the types that couldn't. There were 400 members and 89 women when I was there, and it grew to 125 women. It was the women that inspired me. I became a feminist when I turned 40—I wasn't up until then. I became convinced that government needs more women. The women worked hard and studied the issues. I did a study of the men and women getting out of their cars in the morning. The women changed into high heels and grabbed a huge load of books, papers, and mail. The men put on their jackets and ties and walked into the State House empty-handed.
Once again, my mother's candor is disarming, yet charming. I have come to appreciate a certain trade-off: She might have remembered more if we'd taped her story a year ago, but she's much more direct now. Alzheimer's has removed her discretionary filter.
October arrives with a cold snap. The day is beautiful, but not perfect. That afternoon, I rush out of my office for a dentist appointment, then I realize that I've locked my keys in the car. Damn, I'm going to be late. My first reaction is anger and frustration. I call my husband, Brad, to get a ride, only to reach his voice mail. Now I'm frantic. Then I pause, take a deep breath, and think of my mother. Three children under age five, two broken legs, pregnant with her fourth while she was on crutches. And so, there it was. Five children under eight, three in diapers at the same time, no car all day. And so, there it was. What was I worried about anyway?
Suddenly, the day feels sunny and warm. The walk up the hill to the dentist feels good. I won't be on time, but life will go on. Besides, the exercise is good for me. I sink into the dentist's chair with a smile. Life could be worse, much worse.
But in my frustration over the keys, I'd forgotten to feed the meter. When Brad picks me up at the dentist and brings me back to my car, I find a parking ticket. Even my mother's optimism can't brighten this day! Is my life too crazy, I wonder, or is Alzheimer's contagious? What happens when our brain reaches its functional limit?
Yet no matter how hectic my life is—juggling client meetings, legislative hearings, and charitable commitments with soccer practices, meals, laundry, and meaningful time with my family—I feel at peace as soon as I walk through my mother's door each Friday.
The next Friday, though, when I begin taping, she is at a loss for words. "I can't talk anymore. I just feel as though I have deteriorated so in the last week or two," she says.
"What would you tell people about how to cope with Alzheimer's?" I ask her.
"Well," she replies, "that I don't want to live anymore. That is principally it. I am willing to die tomorrow. That is very private. I don't tell that to Malcolm, at all."
Amazed once again by my mother's frankness, I try hard to be compassionate yet rational. "Do you remember anything about your campaign for Congress?" I decide to ask. My mother tells her favorite story from that campaign.
You and I were campaigning all over New Hampshire. One day, an old guy in a gas station said, "Lady, you should be home taking care of your babies." And I said, pointing at you filling up the tank, "That's my baby, and she's taking care of me!"
"We watched all the debates," I remind her, "you and nine men standing up on the stage. You would put on your jacket and step right up to speak your mind. Do you remember how that felt?"
Yeah, I do. I beat Charlie Bass and I didn't lose to Judd Gregg by very much. Well, I didn't ever think I was going to get elected. That was when I first felt dissatisfied with the Republican Party. I can remember how incredible my daughters were about the campaign. They kept me at it. I felt that I was inferior in a way that my daughters don't feel. That was the era back then. Malcolm was ambivalent about me running for Congress. But I had a good time.
My mother came in second in the Republican primary, beating eight men and narrowly losing to Judd Gregg, who went on to serve in Congress and then the Senate. She even beat Charlie Bass, who later joined her in the New Hampshire Senate and eventually went to Congress, too. But clearly my mother has no regrets. In her world, things happen and "there it is."
I arrive early at the family's summer house on Newfound Lake for Columbus Day weekend and the annual McLane family reunion. My parents are relaxing on the porch, reading aloud the early chapters of my mother's story. I am relieved that they both seem pleased and willing to share their past, including some family secrets.
For my father's recent birthday, I gave him a new book on Alzheimer's disease—The Forgetting by David Shenk. Since Daddy's mother had Alzheimer's in the 1970s, the number of Americans af- flicted with the disease has risen from 500,000 to more than 5 million. As the baby boomers age, the number will climb to 15 million. I share Shenk's theory that "the act of remembering itself generates new memories . . . Overlap, in other words, is not only built into the biology of memory. It is the very basis of memory—and identity."
As we talk, my parents begin opening up about the changes in their lives. Capturing my mother's story is becoming a catalyst for more candid family conversations.
My sister Robin arrives next. She is the oldest and I am the youngest of the five children. Our memories are often different, even of the same experiences. Certain themes in our childhood transcend these differences, however, such as our mother's passion for nature and for cooking. We laugh as we recall picking apples for applesauce and collecting sap for maple syrup.
The conversation turns to the manuscript and Momma's candor about her pregnancy and marriage during her freshman year in college. Talking with Robin openly for the first time, my parents' tone is lighthearted and loving, as if they are relieved to finally tell her about her birth.
The theme of open communication inspires us all weekend. I recount to Robin a conversation I had with Daddy about their options as the illness progresses. For the first time, he has expressed an interest in someone coming to the house in the morning to be with Momma while he goes to the office. He also recognizes now that she may decline to an advanced stage before they can move into Kendal. I tell Robin about his idea that Momma could move to a nursing home in Concord while he stays in their condo and visits her every day. Robin and I are relieved by his open and honest approach to their future. Considering his denial less than a year ago, he has come a long way.
The rest of the clan gathers and the weekend is a wonderful, festive occasion. We renew our commitment to such gatherings.
The next Friday, I talk with my mother about her awareness of the changes in her life and her willingness to talk about her decline openly. When my father's mother had Alzheimer's disease in the 1970s, nobody talked about it until she was too far gone to understand what was happening to her. We are hopeful that my mother's openness can help others with Alzheimer's and their families to cope and connect. To get past the denial. To savor their last dance together.
My friend Lucia's mother has Alzheimer's, too. Lucia and I make a point of getting together regularly, to share our experiences. She tells me during one visit that she took her son Sam to Plimoth Plantation and brought her mother along, thinking she'd enjoy the living museum. Sam and Lucia had fun talking to the interpreters dressed in period costume and asking questions about life in the 17th century. Lucia's mother listened intently.
Later, Lucia asked her mother if she enjoyed the visit. "It was terrible," her mother replied. "I felt so sorry for the poor people living in those dingy houses." Lucia realized that no amount of explaining could help her mother understand that the "Pilgrims" were just actors. Four centuries ago was indistinguishable from the present. So Lucia bit her tongue and focused on her mother's compassion. She said how much she admired her mother for caring about the less fortunate.
When Lucia finishes her story, we chuckle over the actors going home to cook dinner in the microwave. Alzheimer's is serious and sobering, but we realize that humor is essential now more than ever. Lucia even wonders if my mother's candid approach to Alzheimer's could actually be changing the course of her disease.
That week, my colleague Lucy calls to ask, with urgency in her voice, "Annie, are you okay?"
"Sure, I'm fine," I say. "Why?"
"Well, I just spoke with a client who saw your mother last week," Lucy says. "Apparently, she told him that you are running for governor. Then she told him how much money you make!" Lucy is laughing now.
"Oh, my God!" I am laughing, too, but I am mortified. "Maybe we're not okay. Thanks for telling me," I add, laughing with tears in my eyes.
Once again, in my mother's world, public and private lives merge—with a new twist. I suddenly think of a TV cameraman on the State House lawn on September 11 who said to me, "The world will never be the same again." Our family's life will never be the same again either. The question now is how to live amid the changes. How to reconcile my mother's wishful thinking about me with my wishful thinking about her.
The next Friday I focus my questions on my mother's parents and her life growing up in Hanover. Although my original idea was to capture the story of her political career, her memory is stronger the further back we go. I decided to follow her lead.
My father, "Pudge" Neidlinger, was the dean of Dartmouth, so he was out of the picture much of the time. I never got to know him very well. He painted pictures when he wasn't working, so we didn't see him very much. I loved my mother completely! When she died, I went to her best friend to tell her and she said, "Thank goodness. The lucky duck!"
I will never forget that day myself. My parents and I were visiting my grandmother at her home in Chatham on Cape Cod over Labor Day weekend in 1979. My grandfather had died in the spring of 1978, just before I graduated from Dartmouth. Grammy was going blind and was lonely living by herself. One morning during our visit, my mother was sleeping upstairs while my father was reading in the living room. I was taking a bath when my grandmother burst into the bathroom.
"I'm so sorry, Ann, but I think I'm going to lose my lunch," she said, rushing to the toilet. Grammy was flustered about intruding on my bath. I knew right away she wasn't feeling well. I dressed quickly, then settled her in her bed, thinking she had the flu. Her last words to me were, "Ann, I hope you can manage making your own breakfast."
"Grammy, I'm 23 years old. I think I can fix my own breakfast!" I replied with a laugh.
Over the next half hour, I kept checking on her from the doorway, so as not to disturb her. She was sleeping peacefully each time I looked in. Eventually I noticed she hadn't moved in a long time and I went closer. Only then did I realize that my grandmother had died in her sleep of a heart attack, without sound or struggle.
Grammy's best friend was jealous that her final moments were peaceful, in her own bed, with her family there. I remember her doctor telling us he wished more families could experience death this way. When I expressed regret that I hadn't called an ambulance, the doctor said if I had, my grandmother would have died on the highway, rushing to the hospital with sirens blaring. He was certain she'd have preferred falling asleep, in her own bed, wearing her sneakers.
My grandfather, Pudge, had been legendary for kicking a 51-yard field goal for Dartmouth against Harvard in 1922. My Dartmouth College classmate Nick Lowery kicked a 51-yard field goal in 1976, before going on to a distinguished NFL career. Watching from the stands at the Harvard-Dartmouth game in Cambridge, Pudge was pleased that Nick tied his record but didn't surpass it.
Once, when the twins were young, Susan and Sally convinced their father to demonstrate his athletic prowess to a skeptical student. According to legend, Dean Neidlinger put on his fedora, walked the skeptic down to the football field, and had him hold the ball on the 41-yard line (the goal posts were 10 yards behind the end zone then). Pudge repeated the kick in his tweed suit and street shoes, without ever removing his hat. Then he turned around and kicked another 51- yard field goal in the opposite direction, for good measure.
I ask my mother whether her father's athletic achievements had influenced his daughters while they were growing up.
Daddy drove Sally and me to all our ski races on weekends. We skied at Moosilauke and Cannon before there were any ski lifts. We hiked up the trail and learned the race course on the way up. It was better that way. We knew the trail when we raced down.
My mother is clearly enjoying these memories. But then she comes to a sad one.
When Pudge died in the hospital in Hyannis, I didn't realize he was going to die. Grammy had to make a decision about another surgery or letting him die. She didn't know what to do. She was so sad to let him go after all their years together. After Pudge died, I put in the bill for the living will and it passed. That was one of my proudest moments.
My mother wanted other families to know the wishes of their loved ones. She didn't want anyone else to feel the pain Grammy experienced, not knowing what Pudge wanted at the end of his life. My mother organized a broad coalition of health-care and religious groups and hammered out compromise language for the living will legislation. She even garnered the support of the Catholic Church. She also sponsored legislation to license hospice services in New Hampshire and became an advocate for a more humane approach to death and dying, one that would allow physicians to administer pain medications but withhold extraordinary measures to prolong life. She wanted patients and families to spend their last days together living life rather than fighting death. Now her own activist life is nearing an end.
The anthrax scare is the top story on NPR as I drive to my parents' condo the next Friday; there are even FBI warnings of another terrorist attack. "What is the world coming to?" I wonder. I decide to ask my mother about her longtime interest in international affairs.
We invited foreign students to stay at our house when you kids were young. I enjoyed having foreign guests, so the World Affairs Council would call whenever someone interesting came to New Hampshire. I had the most beautiful house and a nice guest room, so they came to stay with us. Then when I was in the legislature, I would bring the foreign visitors to see the State House.
The World Affairs Council brought in famous speakers and held conferences. Secretary of State Dean Rusk came to our house for cocktails before his speech. New Hampshire had the first presidential primary, so everyone came to visit here first! Later, I organized a big conference on China before President Nixon went there.
I'm flooded with memories. I remember at age five showing students from Martinique and Guadeloupe how to use a dishwasher. I recall a huge red dragon in the middle of our dining room table for the "Red China" conference. Foreign policy was a constant theme in our family. "What do you think about the threat to world peace now, Momma?" I ask.
"I don't think about it at all," she says. "I read the front page of the paper and then, that's it."
I realize that my mother is now able to simply tune out terror. Is this the silver lining of Alzheimer's disease? In her world, there is no place to hide from the plaques and tangles destroying her brain. But bioterrorism at home or war halfway around the world is just front-page news. Nothing more, nothing less.
Slowly I realize that I face the same choice. Live in fear or come to terms with the changing world. Anthrax, Afghanistan, Alzheimer's: in my life, it's all the same state of mind.
November sinks into our psyche as leaves gather on the ground and wind whistles through the bare trees. My mother's life echoes the season, slipping into gray, with occasional bursts of brightness.
My parents call to report that they've visited a new retirement community in Concord that specializes in memory loss. "I love it," my mother says, sounding like a teenager who's been visiting boarding schools and is about to begin the next chapter in her life. "It's perfect! Malcolm can visit anytime. We can even go out for a drive or to dinner whenever we want." My mother sounds delighted by the relative freedom. My father is pleased, too, relieved to have a plan for their future.
Later that week, I drive to Hanover for dinner with my Aunt Lilla at Kendal. Then we attend a forum at Dartmouth—"Mind, Memory, and Aging: Perspectives on Preventing Memory Loss and Alzheimer's Disease"—by three leading medical scholars. Dr. Robert Santulli, an assistant professor of psychiatry at Dartmouth and president of the New Hampshire Alzheimer's Association, cuts right to the chase in his opening remarks, saying, "We simply do not have the medical knowledge or technology to prevent Alzheimer's disease." Age is the number-one risk factor, he says. The incidence of Alzheimer's is 5% at age 65 and 50% at age 90. Given the country's aging population, Alzheimer's is on the rise. As Dr. Santulli reviews the other risk factors, my focus shifts from my mother to myself for the first time. In addition to age, gender is also a factor; more women than men have Alzheimer's, perhaps because women live longer. Genetics plays a role, too; the risk increases two to four times if a blood relative has had the disease.
The one glimmer of hope is that behavior modification may delay its onset. While describing the list of "behaviors that have been associated with Alzheimer's through scientific research," Dr. Santulli urges caution in jumping to conclusions "at this stage of medical knowledge."
Yet the research he cites is fascinating. Studies from France suggest that moderate use of red wine may decrease the risk, presumably due to its antioxidants. But everyone seems to agree that long term alcohol abuse significantly increases the risk. On the other hand, smoking may decrease the risk because, as Dr. Santulli notes with a wry smile, early death leaves less time for Alzheimer's to develop.
Education may lower the risk, either by creating a "cognitive reserve" of brain cells or by stimulating the synapses, the connectors that form neural pathways in the brain. One study shows that each year of higher education results in a 17% reduction in the risk of Alzheimer's. But, Dr. Santulli points out, the research may be flawed because people with more education often do better on cognitive tests, thereby masking the effects of the disease.
Numerous studies conclude that social isolation significantly increases the risk of cognitive decline, and research from Greece and France demonstrates that marriage reduces the risk. Other studies conclude that increasing the time devoted to intellectual activities or exercise decreases the incidence of Alzheimer's.
Next Dr. Santulli lists possible medical interventions. The news of the week is a breakthrough study of ibuprofen in mice, resulting in an 80% reduction in plaque formation. Although the results are stunning, Dr. Santulli is cautious, noting the high dosage of ibuprofen used in the study. In addition to anti-inflammatory drugs like ibuprofen, scientists are probing the impact of antioxidants, such as vitamin E; folic acid; and an alternative remedy called ginkgo biloba that's been shown to have a small effect on retaining cognitive function. While acknowledging that medical science has yet to discover a definitive preventative, cure, or treatment for Alzheimer's, Dr. Santulli holds out hope with his faith in scientific research.
Dr. Julie Fago, an associate professor of medicine at Dartmouth (as well as a 1987 graduate of Dartmouth Medical School), focuses her remarks on women with Alzheimer's. She says the first patient ever diagnosed with the disease was a woman, in 1906, when a German physician named Dr. Alois Alzheimer noticed changes in the brain of a woman who had died of an unusual mental illness. Dr. Fago says studies have tried to determine why women are three times as likely as men to develop Alzheimer's. Research has shown that women treated with hormone replacement therapy, namely estrogen, exhibit higher cognitive function. Future discoveries may confirm a role for estrogen in delaying the onset of Alzheimer's.
Closing with a quote from George Eliot—"It's never too late to be who you might have been"—Dr. Fago concurs with Dr. Santulli's advice to "use it or lose it." Physical and mental exercise, as well as a satisfying social life, still offers the best prevention for memory loss. Besides, she adds brightly, "it's a better way to live!"
Dr. David Knopman, a neurologist at the Mayo Clinic (and a 1973 graduate of Dartmouth Medical School), outlines recent advances in the scientific understanding of Alzheimer's. In closing, he mentions the cholinesterase inhibitors, Aricept and Exelon, which have proved to delay the onset of memory loss and Alzheimer's disease.
Many believe that a definitive diagnosis of Alzheimer's cannot be confirmed until autopsy, a grim catch-22 for patients and their families. Research reveals, however, that experienced physicians are accurate 90% of the time with a diagnosis based on the patient's personal history, a medical exam, and a process of ruling out other known causes of memory loss and declining cognitive function.
Lilla and I are fascinated by the presentation. Even as we dedicate ourselves to "mental and physical exercise and a satisfying social network," we refuse to live in a state of panic or denial. We will live in my mother's world, appreciating the moment, and put faith in future research. Patience is a virtue. Peace of mind will be our reward.
Monday night, my sister Debbie calls to report on a recent visit she made to my parents. Debbie says she's learning to give Momma time to respond in a conversation. "I bit my tongue to let her talk," Debbie says with a laugh. We realize that Momma knows what she wants to say most of the time, but we only have a 50/50 chance of being right if we fill in the words for her. If we're wrong, she gets more confused.
Thursday night, my parents come to our house for dinner with my nephew Erik, who is visiting from the West. Afterwards, as Brad and my mother finish the dishes, my father tells Erik and me how she is doing this week. "Susie hardly reads at all anymore," he says, "but yesterday she was reading ahead in one of the Alzheimer's books. She came to a section about the final stage, when total memory loss and confusion sets in. Susie brought it to me and pointed out the paragraph about the final stage. She wanted me to read it, but she was still smiling, almost as though she didn't really comprehend how bad it could be at the end." My father's eyes fill with tears. "I told her, 'We'll get through it together, Susie, you and me.'" I am amazed at how far my father has come. He is a new man, totally open and honest with his feelings. We are blessed to have found one another this way.
The next day is our last taping. My mother is having a good day. Her thoughts are coherent, even though the words to express them are often slow to come.
I can't get over what's happening in Afghanistan, how the people are coming back out in the streets. The women have gone back to work and to their lives. I think that is the essence of my life. I went to the legislature at age 40 and I sat down next to Betty Green. I didn't realize until that point, having grown up at Dartmouth and married Malcolm, who was a Rhodes Scholar, that women were as bright as men. That was the most incredible experience of my life.
"What do you think about our time together this fall, taping the story of your life?" I ask.
I think that doing this with you is the cause of me being positive, instead of negative, about Alzheimer's. I look back on my life and I just feel wonderful.
"Do you think talking about your feelings has helped you cope with Alzheimer's?" I wonder.
Yes, I do. I can't talk any more about the present. [She pauses.] Malcolm and I are going to go to Egypt, but I can't remember where we're going. I know I will enjoy it, wherever it is! [Another pause.] So that's it.
"Are you worried about whether it's safe, with what's going on in the world?" I ask.
No, because if it's not safe, I'll die early. I am into reading about Alzheimer's. It discourages me so about the later stages, incontinence and that sort of thing—not tasting, not remembering. You are in bed the last year or so. I get depressed by that.
"The only saving grace to this disease is that when you get to that stage, you won't realize it," I say softly. "We will be there to make you comfortable, to keep you happy." I am trying to reassure both my mother and myself about what the future holds. "But if you go out in a hijacking in Egypt, we'll wish you well," I add. "At least you and Daddy will be together!" My mother laughs, then continues talking about her life now.
Malcolm is so unusual about the illness. He is really wonderful. . . . He is very kind now. He's gone back to where he was when he married me because I was a young girl.
"He's read the Alzheimer's books, too," I say. "Now he is much more open talking about his feelings. Daddy is so loyal to you and fond of you. He loves you very much, don't you think?" I ask expectantly. My mother's eyes are twinkling as she responds.
He really does love me . . . [She pauses, smiling as she searches for words.] I love him very much, too. I feel that he is kinder now. It's nice . . . it's very nice. . . . In fact, it's excellent!
I give my mother a hug and lay my head on her shoulder. "I love you, Momma," I say.
Our Fridays are at an end. Week by week, I have felt my mother's lessons sink into my life. I am living in the moment and finding joy in simple pleasures. I am learning to let the memory of misery fade first. I am appreciating nature. I am reaching out to family and friends, opening my heart and soul, as we laugh together over joy and cry together over sorrow. I am learning to live by not being afraid to die.
I have also come to realize that my life is my own to live. Everyone has different memories of our family. Our perception becomes our own reality. No matter what I accomplish, I have no regrets about the decisions that have framed my life. Others in my family have made different choices. In the end, that's what life is all about.
I get together again with Lucia, who recently visited her mother. Lucia says our conversations have helped her appreciate each glimmer of recognition and hope. "One of the hardest parts of coping with Alzheimer's," she says, "is that you never know when to grieve."
Half of the grief about Alzheimer's is letting go. Learning to let go may be the last lesson I learn from my mother.
In the months following our taping sessions, my mother continues to slip away from us. Grief comes in waves, at the sight of a flock of geese flying south or a child skating on the ice. Memories fill my mind. Loss fills my heart. We are living the last dance, feeling the anticipation that the party will end, yet hoping that the feeling of love in our hearts will last forever.
Suddenly three winters have come and gone since my "Fridays with Susie." The music has slowed but not yet stopped. My mother reads her book cover to cover every day. Then she begins at the beginning again. In this way, she holds onto her identity, even as the person within her slips away.
We are savoring our last dance together, each of us coming to terms with Alzheimer's disease in our own way. We live in the present with my mother, entering her time zone whenever we visit. Every glimmer of recognition is a gift from the past. Every moment together is a memory for the future. We did not choose our mother's slow demise, but we take advantage of the fact that we have time to say good-bye, over and over again.
My father devotes his life to caring for my mother, 24 hours a day, seven days a week, day in and day out. They settle into a comfortable routine. The morning starts with the Today show while Momma has breakfast in bed—a banana and a muffin with a cup of coffee. Then an aide from the Visiting Nurse Association comes to bathe my mother and help with the laundry and cleaning, while my father goes to the office. He appreciates the company of his colleagues and the routine of his work now more than ever before. At noon, my father comes home and makes my mother lunch—a bowl of soup, with yogurt for dessert. After lunch, they take a nap and then a drive, to enjoy the sights of scenic New Hampshire. Occasionally, they go out to dinner but most nights my father serves dinner at home; he becomes a fan of Boston Market's healthy takeout meals. Every evening they watch the PBS NewsHour and often a movie before settling in for the night. As time passes, my father gets up in the night several times to help my mother to the bathroom. Everyone, especially my mother, marvels at his patience and kindness.
Friends and family visit for lunch or tea. As the months pass, my mother speaks fewer and fewer words but always manages to get out her favorite line: "I have Alzheimer's. I can't speak, but I listen to your every word."
Soon motor changes become evident. The fingers on her right hand began to curl up. The hand that changed 10,000 diapers, cooked for decades, wrote hundreds of speeches, is ready to rest. Then the physical disability spreads up her arm to her shoulder. My father has to remind her to start with the right sleeve first as he helps her put on a shirt or sweater or coat. Soon she loses muscle control in her right leg as well.
"I've learned to start dressing a half hour before we go out," he reports, a habit I remember from putting toddlers in snowsuits. The analogy comparing Alzheimer's disease to raising a child in reverse is uncannily accurate, as my mother slips from dressing herself to being dressed, from coping in the bathroom to using Depends, from driving and walking on her own to sitting in a wheelchair, watching the world pass by.
By the spring of 2004, when people ask, "How's your mother?" I say, "She's doing fine, but have you heard? She moved into a nursing home in February. She is in a wheelchair now. She can't speak, but she stays cheerful. Thank you for asking."
My mother feels safe and secure in her new surroundings. Everyone is relieved. My father can let go of the burden of his responsibility as her primary caretaker. Now he can focus on his role as her husband, visiting every day, living in the moment, loving her one day at a time.
On a beautiful April day, I stop by to take her for a walk in her wheelchair. It's her first time outside in a while. The day is warm. The sun is bright. Everywhere we look, the world is painted in brilliant colors—pink tulips, yellow daffodils, green grass.
"Look up, Momma, look at the clouds," I say, pointing to the fluffy white clouds in the blue sky above.
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? She seems like a child, marveling at the world around her.
As the path winds past a row of independent- living apartments, we come upon a woman planting pansies along her walkway. We stop to admire the pretty border and chat with her for a moment. Suddenly she looks at my mother and notices her face. "You look just like Susan McLane!" she exclaims.
My mother begins to laugh, as I respond, "This is . . . she is . . . Susan McLane."
The woman leans down and takes my mother's hand in her hand. She looks deep into her eyes, with a warm smile. "We are honored to have you living here at Havenwood," she says, with reverence in her voice. "You have done so much in the lives of women and families," she continues, looking intently into my mother's eyes. "You have done so much for our whole community."
My mother is beaming now, her head held high, her eyes sparkling. Behind my sunglasses, tears flow down my cheeks as I try to respond. "You are so kind. Thank you," I say with a smile.
As we continue on our way down the path, my mother watches the world go by, knowing that she has made a difference in the lives of others, that she has made the world a better place. Half of the grief about aging and Alzheimer's disease is learning to let go. We have learned to let go of the loss and to focus on the love and laughter. Inspired by my mother's courage and grace, her love and laughter, we have learned to be here with her, in the present.
Epilogue: On February 13, 2005—three months after the publication of the book from which this feature was adapted—Susan Neidlinger McLane died in hospice care at Havenwood nursing home in Concord, N.H.
The Concord Monitor ran a front-page, above-the-fold obituary that read in part: "McLane, 75, had Alzheimer's disease, a condition she spoke about openly. 'She wanted it to be okay for people to talk about Alzheimer's,' said Ann McLane Kuster, her daughter. 'We always said it was her last cause.'
"Although McLane had been living at Havenwood for a year, she was relatively active until last week. But then her throat muscles stopped working, a condition of the last stages of Alzheimer's. She had told her family not to put her on a feeding tube.
"Her children and grandchildren came from all over the country and joined her husband, Malcolm, at her bedside. . . . It was a peaceful end, her daughter said, and an appropriate one: McLane cowrote the law that allows people in New Hampshire to refuse life-sustaining medical care."
That allows people to die with dignity, adds her daughter a few months later.
Ann McLane Kuster is a 1978 graduate of Dartmouth College and a 1984 graduate of Georgetown Law School; she is a partner in Rath, Young, and Pignatelli, a Concord, N.H., law firm. This feature is adapted with permission from a book titled The Last Dance: Facing Alzheimer's with Love and Laughter, which she wrote in collaboration with her mother, Susan Neidlinger McLane. Information on the book, published by Peter E. Randall Publishers, is available at www.thelastdance.org. The photograph on the facing page and all the color photos in the article were taken by Ken Williams, who is both a staff photographer for the Concord Monitor and a family friend of the McLanes. The skiing photo on page 63 is courtesy of the New England Ski Museum. The historical photos in Dartmouth settings are from the Dartmouth College archives and were taken by Adrian Bouchard. The other historical photographs are courtesy of the McLane family.
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