Sundays can get pretty hectic for Susan Buchbinder.
There is the time spent setting out a week’s worth of medicines for her ailing mother-in-law, who manages to live on her own but requires the help of her children and their spouses to do many of life’s little chores. There’s the weekly visit with her 101-year-old grandmother, who two years ago was checked into a nursing home.
And, of course, there are Buchbinder’s responsibilities to her own children and husband: the errands to be run, the groceries to be bought, the time to be spent raising two boys and caring for a spouse. As the day winds to a close, there are the few moments she spends preparing herself to begin another work week on Monday morning.
Buchbinder, 47, may not look like much of a trend-setter, with her salt-and-pepper hair and her quiet demeanor. But as a four-generation caregiver, she is on the cutting edge of a demographic trend that social workers expect to grow exponentially during the next few decades. As seniors increasingly live well into their 80s and 90s and beyond, the kids they hoped would care for them have grown old themselves. The next generation, many of whom still are raising children of their own, find themselves a heart attack or broken hip away from caring for four generations of family members: themselves, their children, their parents and their grandparents. The sandwich generation–the middle-aged, mostly female caregivers already squeezed between the demands of elderly and infirm parents and the needs of their own young–includes more than 5 million Americans. If demographic projections prove accurate, the sandwich soon will be a triple-decker as ailing grandparents are added. The burden of care also may spread horizontally to include aging aunts and uncles, disabled siblings or ailing in-laws.
On the fifth floor at the Lieberman Geriatric Health Centre, a nursing home in Skokie, 17 of the 48 patients are part of four-generation families, says social worker Julie Lasin. “We’ve seen a huge increase in multigenerational caregiving,” she says. “Grandchildren who have their own children are sometimes even more involved than grandchildren who don’t have children of their own. They want the children to have the experience of knowing their great-grandparents.”
For some families, being involved with care means a daily visit to the center. For others, it means a Sunday pilgrimage. For many, it means phone call after phone call to the social workers and support staff to make a beauty shop appointment, be sure the doctor has stopped by or arrange for some other need, Lasin says.
Whatever its form, caring for ailing seniors can be a burden both emotional and physical. “Many times, you end up with two patients–one of whom is the caregiver,” says Anna Zimmer, director of the Institute on Mutual Aid/Self-Help of the Brookdale Center on Aging at Hunter College in New York City. “She exhausts herself and does not take care of her own health. Depression is one of the biggest problems.”
According to statistics analyzed by the U.S. Department of Health and Human Services, more than two-thirds of primary caregivers live in the same household as the person for whom they provide care. Typically, the caregiver is in her 50s, but in many cases she is 60 or older, meaning she already is reaching the age when her own health could fail. In fact, one-third of the caregivers describe their own health as fair to poor.
Generally, caregiving begins with little things: providing the mother who can no longer drive a lift to the grocery or the doctor’s office; accompanying the father who no longer hears well enough to be sure he heard what the doctor said; lending a hand to the aunt who no longer sees well enough to cook her own meals; looking in on the grandmother who breaks a hip and, despite needing a little help getting from the bed to the wheelchair, is completely self-sufficient, thank you very much.
From there, it can grow into an increasingly time-consuming task. Perhaps it requires showing up daily to make sure Mom has taken her medicine. Or coming by at lunch to help Dad heat up the Meals on Wheels. Or dropping in on the way to work to help Grandma get dressed, and on the way home to settle her back into bed.
Even when there are no scheduling demands, there are always the worries: Is Mom OK? Should I have stopped by? Why isn’t she answering the phone? Later comes the really tough stuff: making the decision to move Mom out of the home where she has lived her entire adult life, or convincing Dad that he should be living with you, for his sake as well as yours.
Remarkably, for some caregivers, moving a family member from the caregivers’ home into a nursing home actually seems like more work, says Deborah Merrill, an associate professor of sociology at Clark University in Worcester, Mass., who interviewed 50 families about their caregiving responsibilities for her book, “Caring for Elderly Parents: Juggling Work, Family and Caregiving in Middle and Working Class Families.”
“Caregivers I interviewed said that it was more stressful having a parent in a nursing home. They had to find the time to go there every day, they said, ‘but when he lived with me, I incorporated that into my daily life,’ ” Merrill says. “And they had a great deal of guilt.”
The guilt can be even greater if the relationship was difficult before the parent or grandparent became dependent on the younger generation, noted Brookdale’s Zimmer, a 79-year-old social worker who has spent the last three decades studying these issues.
“We have a Commandment that says, ‘Honor thy mother and father.’ I talked with an older person who was caregiving who said, ‘Why do you think they had to give us a Commandment? Because it’s so hard to do.’ “
Most of the media attention on the elderly has been focused on the spry older generation, people like Zimmer, or the 90-year-old marathoner, or the 80-year-old college graduate. But the reality is that not all seniors ate right and exercised regularly with the intention of living into a second millennium. Ask around the next time you find yourself in a nursing home. Chances are, the majority of the residents will tell you they never intended to live long enough to become a burden on their children or grandchildren.
While social workers and demographic experts say they are only beginning to see families bearing the burden of four needy generations, the population projections suggest that as the Baby Boom becomes a senior boom, the numbers will grow. In 1987, one in eight Americans was 65 or older. The first wave of the 75 million Baby Boomers will turn 65 in 2011; by 2030, one in five Americans will be 65 or older.
And the old just keep getting older. In 1994, there were 33.2 million elderly, only 3 million of whom were 85 or older. But by 2050, the Census Bureau predicts, the over-85 group will grow more than sixfold to 19 million, making it the fastest-growing age group in America. Put another way, by mid-century 5 percent of the population will be over age 85. And that’s the aggregate figure across races; the percentage estimate is even higher among Hispanics and African-Americans.
The vast majority of those seniors who fall ill will be cared for at home by family members, a kind of underground economy of uncompensated caregivers. A 1999 study by the United Hospital Fund of New York City estimated the economic value of informal caregiving at $196 million in 1997. That figure dwarfs the $83 billion spent nationally on nursing home care as well as the $32 billion spent on formal home care, a figure that grew three times faster than spending on physician and hospital services between 1990 and 1997, the study found.
In an effort to help those informal caregivers, the National Family Caregiver Support Program was signed into law by President Clinton last year and funded in the 2001 federal budget at $125 million. The program is designed to funnel aid to state and local agencies that provide caregivers with counseling and training as well as information on support services. It also provides money for respite care to allow overburdened caregivers an occasional break.
Programs that support home caregivers appear to be the trend in public policy, say experts Janie S. Steckenrider and Tonya M. Parrott, authors of “New Directions in Old-Age Policies.” Their 1998 book notes that even if there were enough political will to continue expanding Medicare and other federal programs for the elderly, there wouldn’t be enough money as the Baby Boom bulges into old age. Instead, public policy will focus on family responsibility in caring for their seniors.
What remains unsettled is how much the government should help families shoulder that burden, whether through respite care, tax rebates for home care or some other means. “The Republicans would say, ‘If you give people services, you upset the apple cart,’ ” said Zimmer. “It’s the woodwork phenomenon: ‘People will come out of the woodwork and ask for services.’ But it’s not true. The research has clearly shown that people do not desert their family members” at the first sign of infirmity.
That is borne out by nursing home operators who say their residents now tend to be older, sicker and more dependent than previous entrants. When the Council for Jewish Elderly opened the Lieberman Centre in Skokie in 1981, the average age of those entering the nursing home was 83 and about 15 percent needed wheelchairs. Today, the average age of new residents is 89 and nearly all use wheelchairs and have medical and physical needs that make their care much more demanding.
Fannie Lamm beat the average by a decade. She was close to 100 when she moved into Lieberman Centre two years ago. Affectionately known as Bubbe to the Kagan clan, Lamm died in May. In the years before her death, granddaughter Debbie Rabin, 45, and great-grandson Perry Rabin, 7, were her two greatest pals. “She says she lives for me,” Perry said proudly a month before Lamm died.
Rabin inherited the care of her grandmother 15 years ago when her mother, Pearl Kagan, developed breast cancer. Despite her illness, Pearl continued to provide most of Lamm’s care up until the last few months before she succumbed to the disease. The responsibility then went to Rabin, the grandchild with whom Lamm had been closest.
“For me, the most difficult thing about being a caregiver is making decisions for them when they have to live with the consequences,” says Rabin, sitting in the nursing home where Lamm lived her last two years. “If I make a decision for myself, I have to live with it. But it’s not the same when you’re making decisions for someone else. I had to make the decision to move her from a normal apartment to assisted living. And she didn’t really want to move.”
Fannie Lamm wasn’t the only member of the Kagan family who needed intensive caregiving. The three children of Pearl Kagan–Joel Kagan, Sharon Ellis and Debbie Rabin–lost both of their parents after lengthy illnesses.
“It’s a third of my life I’ve been doing this,” Rabin says, shaking her head. “I was 30 when my mother got sick.” She sometimes found herself caught in the middle between a sick mother and an aging grandmother. Pearl didn’t want her mother, Fannie Lamm, to know how sick she was, and until a week before she died, she hadn’t let on.
“[Lamm’s] doctor said she had to be told because if my mother died without her seeing, she would blame me for the rest of my life,” Rabin says. “So I had to convince my mother that it was the best thing to do.” Her mother died a week later.
For Joel, the burden was double. He also was caring for both of his in-laws, Jack and Ann Weinberg, who had only one child, Joel’s wife, also named Pearl. Until their final years, the Weinbergs lived only a few blocks from the Kagan family business, a jewelry store in Lincolnwood. The close proximity made checking on them easier–Joel stopped on the way to and from work, often dropping in at lunch as well. Sometimes it was just to drop off a newspaper, other times to take care of some need. And when he wasn’t there physically, there were the phone calls. Constant phone calls. And, of course, the family visits.
“They tried to be as independent as they could be, but there wasn’t a weekend that went by that we didn’t see them,” he says. Jack Weinberg, who had suffered with heart problems for two decades, provided the bulk of Ann’s care until her dementia became too severe and Joel and Pearl decided it was time to put her in a nursing home. But deciding was easier than doing. It took four tries, including two attempts in which they took her in the nursing home but had to yield to her protests and bring her back home, before they actually succeeded in moving her there.
Once she was settled, they turned their attention to Jack. They had to tell him it was time to give up his driver’s license because he was no longer fit to drive. “That was the hardest part. It took away all of his independence,” Kagan says.
Still, the Kagan family was luckier than most in coping with frail seniors. They could afford luxuries such as home health care, assisted-living apartments and high-quality nursing homes. And there were three siblings to share the burden. While Joel was focused on caring for his in-laws, Debbie helped care for her mother and grandmother and Sharon could meet the needs of their father.
In addition, the Kagan children were relatively young when their parents were suffering heart attacks, battling cancer or sinking into dementia. And, they all have supportive spouses who pitch in when needed or, at the very least, who didn’t grouse about the time devoted to caring for extended family members.
Buchbinder is similarly lucky. She has a supportive spouse, Colman, and her boys, Avi, 17, and
Sam, 15, don’t complain about the weekly visits with her paternal grandmother, Dorothy Cantor.
At 101, Cantor doesn’t smile much anymore. Her mouth is sunken because she refuses to wear the dentures that hurt, although her white hair still frames a face that retains a hint of its youthful beauty. But there is no hint of the vibrant woman who lived in her own condo until she was 94. Now, she uses a wheelchair to get around the Lieberman Centre. Her hearing is almost gone, so it’s tough to converse with her, but the family shows up each Sunday, ready to try.
“Carrying on a conversation is laborious,” Buchbinder says. “You have to work at it, provide the subjects. I try to bring something to do, maybe recent photographs of a family gathering. Photos are the best way to connect with her.”
Buchbinder’s mother, Phyllis Cantor, provides most of the care for Dorothy. At age 70, Phyllis Cantor is a retired schoolteacher who remains active and vital. She loves to travel and spend time with her friends. But she is 70, and has developed some chronic health problems. Sometimes, she asks Buchbinder to accompany her to doctor visits.
“I’m not taking her to the doctor, per se,” Buchbinder says before a recent doctor visit. “She’s going to a doctor she’s never seen before and she wanted an extra pair of ears there for support and to confirm she is hearing correctly what the doctor is saying.”
But, Buchbinder admitted, there could come a time when she and her brothers, Joel and Phil Cantor, will find themselves called on to do more for their mother. Then, she will have to make even more room in an already crowded schedule.
It helps that she isn’t the sole caregiver for any family member; the nursing home takes care of Grandma’s daily needs, her husband’s siblings attend to her ailing mother-in-law, and her boys are old enough to be quite independent. It also helps that Buchbinder is a social worker for the Council for Jewish Elderly and has the expertise to wade through all the paperwork for Medicare and Medicare supplemental health insurance.
Her 72-year-old mother-in-law will stop by Buchbinder’s office on her way to an appointment, seeking advice on which pieces of mail are important and which are junk that can be tossed. Buchbinder and her husband are in charge of keeping her mother-in-law’s medications in order–lining up the week’s worth of pills each Sunday and checking to be sure they all get taken.
“A lot of it is just keeping in touch. If she needs to go to the store, she’ll walk there and we’ll pick her up and take her home. She likes to walk and we’re the destination for her. Some of it is just being there, being accessible to her,” says Buchbinder.
That isn’t always as simple as it sounds, she says. “It takes communication. It is a close family with a group of siblings that do communicate. When there have been problems, it was because the communication broke down.”
Her job working with seniors and her experience helping her parents, in-laws and grandmother have led Buchbinder to do something that few 40-somethings do: think about her prospective life as a senior citizen.
“You do have to depend on your children in the future. Most people don’t realize it. It’s not something they think about at all, I’m sure,” she says. So how do we make sure our kids will take good care of us when we need it?
“The best way to do that is to do a good job with your own parents and your grandparents now,” she says. “I think that if my kids see me and my husband being good caregivers, that’s the way they’ll be good caregivers.”
