The Age of Dignity

Preparing for the Elder Boom in a Changing America

Ai-jen Poo, Ariane Conrad

• Editore: The New Press
• Anno: 2009
• ISBN:
  9781620970461
• Argomento: Social Sciences
• Categoria: Gerontology

One of Time 's 100 most influential people "shines a new light on the need for a holistic approach to caregiving in America... Timely and hopeful" (Maria Shriver). In The Age of Dignity, thought leader and activist Ai-jen Poo offers a wake-up call about the statistical reality that will affect us all: Fourteen percent of our population is now over sixty-five; by 2030 that ratio will be one in five. In fact, our fastest-growing demographic is the eighty-five-plus age group—over five million people now, a number that is expected to more than double in the next twenty years. This change presents us with a new challenge: how we care for and support quality of life for the unprecedented numbers of older Americans who will need it. Despite these daunting numbers, Poo has written a profoundly hopeful book, giving us a glimpse into the stories and often hidden experiences of the people—family caregivers, older people, and home care workers—whose lives will be directly shaped and reshaped in this moment of demographic change. The Age of Dignity outlines a road map for how we can become a more caring nation, providing solutions for fixing our fraying safety net while also increasing opportunities for women, immigrants, and the unemployed in our workforce. As Poo has said, "Care is the strategy and the solution toward a better future for all of us."
"Every American should read this slender book. With luck, it will be the future for all of us." —Gloria Steinem "Positive and inclusive." — The New York Times "A big-hearted book [that] seeks to transform our dismal view of aging and caregiving." — Ms. magazine

PART I

A Changing America Needs Care

1

THE ELDER BOOM

Even after all this time,

the sun never says to the earth

“you owe me.”

Look what happens

with a love like that.

It lights up the whole sky.

—Hafiz

“I’m not afraid of dying,” my grandma tells me. “But I am afraid of getting dementia or having a stroke. That’s really scary—the idea of not being able to find my way home, or not remembering my own children. But when you get older you never know what will happen.”

My mother’s mother. She has always been my greatest teacher.

“Every time you laugh, you extend your life an extra day, so you may as well laugh a lot” is one of her standard pieces of wisdom. I learned that from her, and now she’s teaching me about what it looks like to age with humor, grace, and dignity. Her experience of old age so far, surrounded by care and support, stands as a beautiful contrast to the heartbreaking example of my paternal grandfather, whose story I shared in the introduction.

Xue Mei Sun is an immigrant from China, living in Los Angeles County with her two adult sons and husband. She works as a caregiver for my grandmother and is an invaluable presence in my family. We are a team, and my grandmother is at the heart of it all, living life fully on her terms at eighty-seven. PHOTOGRAPH BY MICHELE ASSELIN

I was her first grandchild. From ages one to two I lived under her care in Taiwan, because my mom, at age twenty-five, was still finishing her graduate studies at Carnegie Mellon and working to put herself through school. Even after I came back to the United States to attend preschool, I spent many childhood summers back in Taiwan in my grandmother’s care, accompanying her to the market in the morning and watching her prepare food while tracking the flight patterns of outrageously large cockroaches. Munching on the American Pringles I carefully rationed to last my stay, I listened to her stories about all of our relatives. Like the sun in the center of my family’s universe, she was, and still is, the one around whom we all revolve.

My grandmother was born in 1926 and raised in Anhui Province in China. She lived through World War II and the civil war that caused her to flee China for Taiwan, where she lived and worked for more than fifty years, raising three children: my mom (the eldest) and two sons.

“I never take anything for granted. I lived through the war [World War II], so I know what it means to suffer. When I was a child, I was really unhealthy. I had malaria, typhoid, many dangerous illnesses, and I never died. I can withstand a lot. Back then, we had no choice. I look at the positive of everything. Whatever the situation is, I always try to look on the bright side.”

She worked as a nurse in a clinic from 1948 until 1983, when she became the clinic administrator. Thanks in large part to her hard work and sacrifice, all three of her children completed college and received financial aid to attend graduate programs in the United States. They all settled in the United States, had children, and put down roots in their new home.

At first, my grandmother stayed in Taiwan after her retirement, until the pull of more time with her grandchildren became irresistible. In 2000 she and my grandfather sold their small apartment in Taipei and moved to the United States. After living with my mom and then my uncles, they decided to settle in Los Angeles, in a Chinese retirement community on Valley Boulevard in Alhambra, where groceries and prepared food are all within walking distance and most people speak Chinese. Soon after moving there, my grandfather had a stroke that left the right side of his body paralyzed.

My grandmother, while still extremely vibrant and healthy, had broken her hip not long before the stroke, so she was not able to lift anything heavy. My grandfather needed help with everything: getting out of bed, getting dressed, bathing, eating; every daily activity of life required the assistance of a physically strong person. So they asked around, and my grandmother found an ad for a home care agency in the Chinese newspaper. She contacted the agency and hired a home care provider. My grandparents had two care providers come through, and for various reasons, each stayed for only a year or so. Mrs. Sun was their third, and she became, as they say, like part of the family.

With Mrs. Sun’s assistance, for the following two years after the stroke, my grandfather was able to live with my grandmother at home, as he had for more than fifty years of marriage. He was able to eat the food my grandmother cooked, in the style of Anhui Province, where they’re both from, and though he couldn’t talk much because the paralysis from the stroke impacted his speech, he could still sit at the table and be a part of our dinner conversations. He still had questions for us that Mrs. Sun or my grandmother could interpret for us. Thanks to the care team of Mrs. Sun and my grandmother, my grandfather was able to live in the comfort of his own very clean home until his second stroke landed him in the hospital for two months.

After my grandfather was hospitalized, I flew out from New York to visit him in California. A range of emotions cycled through me as I made my way to the hospital: guilt, regret, fear, longing, and appreciation. I was sorry that I hadn’t been to the hospital sooner, that I hadn’t visited enough over the past four years since his first stroke. My flight across the country was a long, slow stream of memories of my grandfather from my childhood, when I spent my summers living with him and my grandmother in Taiwan. I had a vivid memory of him sweeping the apartment floors in his underwear in the hot summer evenings with a handmade straw broom, asking me whether I had washed my hands. Cleanliness and order were always very important to him, and he insisted that everyone in the family wash their hands repeatedly throughout the day.

When I finally arrived at the door of the hospital room, the first person I saw was Mrs. Sun. The hospital was more than an hour’s drive from Mrs. Sun’s home, yet she came every day, usually twice a day, to see my grandfather. She arrived in the morning and stayed for the greater part of the day to help him with his needs as she always had—with eating and bathing—and to keep him company. Then she would go home for dinner with her own family. Most nights, she would return to the hospital after dinner just to check on him and my grandmother.

There in the hospital Mrs. Sun was combing my grandfather’s hair at his bedside, with the same black plastic comb that he had used for years. My grandfather had a beautiful head of hair; he was one of those blessed men who didn’t lose his hair as he grew older and whose hair didn’t gray until much later in life. He took great pride in his hair, and I remember watching him comb it perfectly into place when I was a child. Mrs. Sun knew that combing his hair was just the thing to help him find calm in the midst of the most frightening transition that a person can make, into the unknown.

My grandfather wasn’t awake when I arrived. I washed my hands before sitting down at his bedside to start my good-byes. I wish I had been able to stay so I could have been there when he passed away several weeks later, but I took comfort in knowing that my grandmother and Mrs. Sun were with him at the very end.

Five years later, Mrs. Sun still comes to my grandmother’s home every week to help her with cleaning and chores, so that she can live independently, in the same apartment she shared with my grandfather.

Today, at eighty-seven, my grandmother looks more like she’s in her late sixties or early seventies. Her black hair is well coiffed thanks to regular Saturday visits to the salon. She is still walking upright and leads an active life. She has her favorite Chinese soap operas. She plays mah-jong with her friends—she’s a mah-jong shark—and goes to church twice a week. “I’m glad to be living on my own, able to take care of myself for the most part. I know I need support for some things. My training as a nurse allows me to understand what’s happening with my body and how to take care of my health perhaps more than other people. I have friends who are constantly at the doctor, and constantly in need of someone at their side. Most people my age are not as independent. I do need Mrs. Sun. If I need to go to the doctor, or get my hair done, she comes with me. Going to church, she or her son takes me.”

Having spent four years of her life worrying about my grandfather, and the rest of her life supporting her children and grandchildren, now that she’s in her eighties, my grandma is living life on her terms. Mrs. Sun helps make that possible.

“I do worry about her,” my mom says about my grandma, “but I worry about her less since Grandpa passed away. When Grandpa was still around, after he had his stroke, your grandma sacrificed a lot. He couldn’t do anything for himself. She essentially took over attending to everything he needed at night after his caregiver left. That took a huge toll on her. She had to get up throughout the night. For four years, she could barely get sleep. Now that he’s passed, she’s on her own and has more flexibility to be active and take care of her own health.”

My mother is sixty-three and counting the days to her own retirement. She longs to move to Alhambra and spend every day with my grandmother, who is also her best friend. When they’re together, my mother comes alive. She laughs more—because my grandmother demands it. It’s like my mom gets an extra battery when my grandmother’s around. When they’re not together, they talk on the phone just about every day, chatting about the weather, updates from my sister and me, and stories about different people with illnesses. Between my mom’s work as an oncologist and my grandmother’s life in the retirement community, they have a lot of stories about sickness, caregiving, and dying.

“I hope that I have saved enough money so that I can find someone as good as Mrs. Sun when I become incapacitated,” my mom tells me. “She is a true caregiver.”

“What do you mean by that, Mom?” I ask her.

“You can feel it. It’s subtle, but you can feel it in every aspect of the interaction. If you have the right heart, and the passion for taking care of people, that’s the most important thing you need. Caring is the most important part of care. Sounds funny, but all the other skills can be learned. But it’s hard to train someone to care.”

As a doctor, my mother is a passionate caregiver for her patients, and as a result, her patients’ battles with cancer have been a constant part of our lives. Every Christmas, my mother receives a flood of Christmas cards from her patients and their families, all with updates about how life moves forward, sprinkled with memories of some very difficult times and heartbreaking losses. One family, the Golats, have become like extended family to my mom. Their late daughter, Kelly, died at twenty-five after a valiant battle with a brutal form of melanoma. Every year for more than ten years, the first weekend in October, the family organizes Run for Kelly, a 5K run that begins and ends at Kelly’s high school in the Poconos and helps raise funds for melanoma research. My mom attends every year and brings a team of volunteer doctors to do skin cancer screenings for the runners who participate.

I attend most years to keep her company and even attempt to run the 5K. Kelly was a runner herself, and among the patients to whom my mother became the most attached. At the end of the run, there is a cookout for participants and a short program when winners in each age-group are announced. My mother always says a few words about Kelly and then shares updates on her work to find a cure. It’s always emotional, one of those moments when I’m filled with pride as I’m reminded of the tremendous relationships of care and connection that my mother has with her patients and their families.

My mom’s encounters with families always occur at a time of crisis. Usually by the time people make it to her, they’ve tried many other options. She does everything in her power to help, always looking for the newest, most appropriate clinical trial for each case. For as long as I can remember, she has gone to work by six a.m. and stayed at work until seven or eight p.m. She doesn’t stop for lunch; she keeps a Costco-size bin of snacks in her office and will have some nuts or fruit when she feels hungry during the day.

This has always been a point of contention with my sister and me. We tell her she needs to have a lunch break, and yet it never quite happens. She always has twice the number of patients at her clinic than she should. She always puts her patients first. She is completely committed to them in their greatest moment of need. It’s the thing about her that I love the most—and that worries me the most. She has spent her life caring for others, but I don’t fully trust her to take care of herself.

Like my grandmother, my mom is very matter-of-fact about her future. “Your grandma is fortunate. She is very independent. There’s no reason for her to go to a nursing home; she’s got a clear mind, she’s very active, she’s got lots of interests. There are only certain activities she needs support for. She would feel isolated and depressed in a nursing home. Me, I would prefer to stay at home, too, but if I’m all by myself, it may not be a good idea because it might not be safe, unless I can have someone stay extended hours. It depends on my mental and physical capacity at the time.” My mom’s familiarity with the health care system and the aging process is a blessing, but I still worry that I won’t be able to take care of her. I feel bad that I haven’t yet given her a grandchild and that I have chosen a profession that doesn’t guarantee our economic security.

“Don’t worry, Ai-jen,” she...