Brothers Moshe and Zvi Livne have been in “the business” for 15 years. “Dad was first,” says Zvi. “The symptoms developed quickly and the diagnosis left no doubt. Mom couldn’t care for him and after some years, we realized she had Alzheimer’s too.”
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Their father died in 2004. A third brother lives abroad and isn’t part of “the business,” their euphemism for the 24/7 care of their mother, most of which falls to Moshe. The beginning was the hardest, he says: “It was a catastrophe. I couldn’t function at home or at work for some time because of the mental and physical burdens. I missed a lot of work because of the need to care for the parents and the bureaucratic issue — to work out what sort of help is needed, from who and how to get it.
“The process is interminable,” Moshe continued. “Health insurance, the city welfare department, the National Insurance Institute, permits and a visa for a foreign caregiver.” Since their mother is a Holocaust survivor, he must also deal with the agencies that see to their needs.
The litany goes on. “You have to make sure everything is okay, that the caregiver is there, to find a replacement if the caregiver goes on vacation. To see to food, supplements and medicines for Mom, doctor and nurse visits, tests, wheelchair, hospital bed, a lift to help her into the bed, adult diapers, creams, treatments for bed sores — it never ends. His wife and three kids are, inevitably, involved as well, Moshe says.
Before going on vacation, he has to make sure Zvi will be around to take care of things but is anxious when he’s not there himself, Moshe says. Looking after their mother is always on his mind.
Orit Gleisner, 57, is an only daughter who moved with her husband and daughter from Givatayim to Ashkelon to care for her father, after giving up on finding appropriate around-the-clock care for him. Her mother died five years ago, after having been a custodial-care patient herself for 17 years. Her father, worn out from caring for his wife, sold their apartment and moved into assisted living. After two months, however, “he felt like a caged lion and wanted to go back home,” Gleisner relates. “He lost a lot of money because apartment prices rose and the retirement home levied an enormous fine for breach of contract.”
Gleisner’s father suffers from phobias and anxiety and no longer goes outside. Finding good care for him was impossible, she says. A neighbor once chased her down to tell her that her father’s caregiver would leave him alone at home while she went out. One caregiver was an alcoholic. Another simply left for a different job, without giving notice. Her father had close to 10 caregivers in five years, provided by private agencies whose sole motivation is financial, according to Gleisner.
“They take people from the Third World who are willing to pay them $8,000 to come to Israel. It’s an ugly business. Ultimately both sides are helpless — the patients and the carers, and in the middle somebody is profiting.”
Caregivers have been known to quit on the spot, in which case she has to drop whatever she’s doing and come immediately, says Gleisner. And then train the next carer.
Moshe and Orit are classic members of the so-called sandwich generation — a growing “club” in Israel and elsewhere of middle-aged people who are caring for their aged parents while also raising children of their own.
In fact, the burden of most geriatric care in Israel falls on this informal system. Adult children may have to do everything from feeding, bathing and shopping for their elderly parents, while paying for it all as well.
Live long and don’t prosper
Israel is aging rapidly. Out of a total population of about eight million, around 200,000 people currently receive long-term custodial care. That figure is expected to increase in the years to come, as the number of individuals aged 75 and up grows by an estimated 20,000 to 30,000 each year. National spending on long-term care of the elderly is already nearly 13 billion shekels a year ($3.4 billion), of which households cover 44%, or 5.7 billion shekels.
State assistance is inadequate. The hardest cases, people defined as “entirely dependent on outside help” get only 22 hours of help at home each month, though it bears adding that the Health Ministry intends to increase that allocation. Most families get much less, and they must make up the difference, at huge cost. When home care becomes impossible, the family must undergo a means test in order to determine its copayment level, which can lead to terrible fights among family members.
Most Israelis have basic long-term care insurance through their kupot holim health maintenance organizations, with a much smaller number buying more extensive policies through private insurance companies. Israelis spend 32 billion shekels a year on long-term care insurance.
The sandwich generation as a demographic phenomenon began only 20 or 30 years ago in Israel, says Prof. Israel “Issi” Doron, the head of the University of Haifa’s gerontology department. In the first decades after independence many Israelis did not have grandparents living in the country. Rising life expectancy is also an issue, and in some cases that means long years of long-term care.
In some cases, grandparents, people in their 60s, with health issues of their own, are caring for parents in their 80s and 90s while still being pestered by their own adult children. That’s seems fine as the state is concerned, says Doron — clearly, economically and socially, the state is counting on family to pick up the pieces. “Take a woman, aged 62, who finishes work for the day and spends the next two hours, every day, taking care of her parents. ... She’s saving the state the cost of paying for care.”
It’s usually the daughters who care for the parents, at the intimate level; if the men get involved, they will confine their help to money and administration, he adds.
A joint study by the Myers-JDC-Brookdale Institute found that the average age of such family carers is 55, but a third are aged over 60 and a fifth are under 44. Given contemporary demographics, a middle-aged couple may have more parents to care for than children. Two-thirds of the carers are female — and often the carer lives with the aged parent and is in rickety health too. Half of the carers feel they themselves are in rough shape – and may be neglecting themselves to help their parent.
Y., 62, lives in Tel Aviv and had been caring for her two sick parents for nine years, practically on her own. She’s single and her only brother lives abroad. Her father died 18 months ago, after seven years with both Alzheimer’s disease and Parkinson’s disease. When the home health aide could no longer pick him up, they moved him into an old-age home. Her mother is not formally defined as a custodial care patient but in fact she needs constant care.
“I didn’t even have time to buy clothes. I neglected my own health and focused on taking care of my parents,” says Y., who did not want her name published. Two years ago she collapsed and was hospitalized with a severe infection. “I see caring for my parents as a privilege, not a burden,” she says. “But I’m exhausted.”
Bureaucracy is an obstacle that comes up time and again when interviewing people for this article. “I learned a lot and have gotten pretty good at this, but sometimes there are things, like fighting the HMO over permits for drugs or home nursing, that lead me to give up. I just fork over money, thousands of shekels a year. I have learned to preserve my strength for battles I can win,” says Moshe Livne.
And then there are the family feuds over who does what. The kids fight with the parents and with each other. Caring for a sick relative affects the whole family and it’s the sandwich generation that suffers.
Rachel Ladani, 49, founded Caregivers, a nonprofit organization to help people like herself, who need to take care of parents and don’t know how.
“We get a lot of letters like, my mother’s in hospital after breaking her hip and is supposed to get out in two weeks, and we don’t know what to do, where to do, how to prepare the home, what help she deserves, what would be best,” she says. “Suddenly they need to maneuver between the National Insurance Institute, the Health Ministry, the HMO, the local council. A single person falls into the jurisdiction of so many authorities and you, the family, have to handle the coordination. It’s really hard.”
And before the state will help, the children of the elderly person undergo means testing. That creates two strains, says Doron.
One is between the parents and children: the parents are embarrassed and shamed that the children have to finance them, and the children are not happy at having to finance the parents instead of their own offspring — even though the parents paid health insurance and social security their whole lives. The second strain is when the brothers and sisters each earn differently and start to fight over who should pay what. And who, therefore, loves Mom the most.