A “family caregiver” is a family member or friend who cares for someone who is disabled. Many disabled persons have only one such caregiver. Such solitary caregivers tend to suffer from a great deal of stress and, as a result, are vulnerable to illness.

One source of stress, especially for caregivers who are losing a parent, spouse, partner or friend to Alzheimer’s or another kind of dementia, is seemingly endless mourning. First, they lose the person who was able to be independent and to take care of himself. Then they lose the person who has been a companion in making decisions and enjoying life. Finally, in the case of someone suffering from advanced dementia, they lose the person who has recognized and known them.

The obvious suffering of their loved ones who are losing abilities, independence and parts of themselves sometimes makes it difficult for caregivers even to admit that they too are hurting.

“What right do I have to be upset,” a caregiver may ask herself, “when my loved one is losing and suffering so much?”

A geriatric care manager can help caregivers recognize, accept and express their feelings of mourning and can refer them to caregiver support groups that can help in these ways. Freedom to mourn is freedom to love the person one is losing, to receive from them what they can still give, to care for them with realism, intelligence and tenderness, and to take care of oneself.

Denials of mourning by caregivers are common and understandable, but they can have tragic results. A caregiver who cuts herself off from her mourning may not be able to recognize, affirm and enjoy the ways her loved one is still present. For example, even a person with advanced dementia can often, with encouragement, remember and tell stories about his childhood and early life. He will sometimes respond with physical warmth and even playfulness to a loved one whom he does not remember, but whose affectionate touch is familiar. In order to receive such gifts, a caregiver must be able to admit her feelings for and thus her mourning of her loved one.
Caregivers sometimes deny the feelings of anger about losing their loved one that is part of mourning. The repressed anger can break out in hurtful ways. For instance, a caregiver may become cold and distant in dealing with his loved one. Or he may find that he is constantly frustrated with and critical of her for what she can no longer do.

Often caregivers feel guilty about their anger. They become critical of themselves for what they have not done or are not doing or for their lack of compassion. Such guilt results in a vicious circle. When they attack themselves, caregivers become more exhausted, less able to care, and less able to love, which can lead them to be even angrier with themselves.

Caregivers who are caught up in guilt and the denial of mourning and who face the overwhelming demands of caregiving on their time and energy tend to neglect their own needs and health. Too often such neglect leads caregivers to become ill themselves.

Getting help with mourning from a geriatric care manager or a support group is thus a way of caring for both one’s loved one and oneself.

Dr. Herndon is with Community Geriatric Care Management, a wholly owned subsidiary of Foremost Home Care. communitygeriatriccare@gmail.com

Since 2008, yellow cabs in the city are required to have a touch screen that provides maps, fare information, and a credit payment system. Many of these systems are already provided by CMT. This new tech gives CMT equipped taxis nationwide with audible touch screens. The new monitors will allow passengers to hear fare changes at regular intervals, and provide a new way for the visually impaired to use their credit and debit cards. With the swipe of a special card, or by asking the driver, riders can make the screen accessible to visually impaired. The touch screen is then divided into large, easy to navigate sections that are prompted by step-by-step spoken instructions.

Council Member Vacca and Former Governor Paterson testing the new audible touch screen taxi technology.

“I know that New York City is one of the most difficult places for blind and visually impaired individuals to navigate, because my own father was blind. This issue is personal for me,” said Vacca in an emailed statement. “This technology will make a real difference for people who need it.”

The new touch screens are the latest in a string of pro-accessibility measures championed by Vacca, who is also Chair of the Council Transportation Committee. On March 28 the City Council passed three bills aimed at improving mobility for the visually impaired, including a bill by Vacca that requires the Department of Transportation to post maps online that are accessible to those with sight and hearing disabilities.

For most of her seven-year career as a nanny, Anna has been fortunate to work for two families that have paid her a decent wage for roughly nine hours of work a day. Her duties usually include taking the children for a stroll or to play dates, cooking dinner in the evening and cleaning.

But even with good employers, Anna has still been denied something as basic as proper time off. The first family that hired her, she said, never provided paid sick days. Luckily for her, they weren’t needed. In fact, she was unaware that such perks were common until she interviewed for a position with a woman—a lawyer—who promised one a month.

“There’s no right to complain,” the West African nanny said.

Mary, a 60-year-old nanny who is also from West Africa, was recently let go because of the tough economy. She received no severance from the family other than a one-day-per-week cleaning gig, though she hopes the family will help her find another nanny position. She claims European families are more inclined to give severance pay. A French family in Manhattan that hired her in the late 1990s paid out $2,000 when they had to let her go.

Earlier this year, a rally on the steps of the Capitol in Albany pushed for legislation in both the State Senate and Assembly that would protect the rights of domestic workers.

While these women talk lovingly of the families that hired them, they also hear the stories other nannies tell each other in the playground coffee klatch.

“You go to a play date or park, they talk about their boss,” says Mary, a domestic worker since 1995. “I never have the problems, but some complain.”

The complaints include simple annoyances, like being barred from eating inside the boss’ home, or having to take the children outdoors every day. But other grievances are more serious: the family goes on vacation and refuses to pay the nanny for time away, or the nannies are denied paid sick days. For people on a tight budget, this lost work adds up and can force them to look for consistent employment elsewhere.

“They can’t pay rent, can’t pay for food,” Anna said. “They’ll go find another job.”

Domestic workers are guaranteed the federal minimum wage, but there are no guidelines for working conditions and rights, and few avenues to complain. Given that most of the metropolitan area’s 200,000 domestic workers are undocumented immigrants, and with job opportunities becoming scarcer, few are willing to voice an objection.

“They have to change the law,” Mary said.

Now, a coalition of domestic workers, labor unions and human rights organizations is waiting for the State Legislature to return to Albany this fall, hoping to do just that.

Patricia, a Caribbean immigrant who has been a nanny for just more than a decade, sees great value in her job. If she is late, so is her boss.

“We make other work possible,” she says proudly.

She is currently unemployed and has worked for families in New Jersey and the West Side. Throughout her career, she has seen the vulnerability of domestic workers and even the abuse that can be inflicted—intentionally or negligently—by the families that rely on their service.

Patricia says she has been a victim of physical and verbal abuse, and was denied overtime pay and much-needed time off. And because every major labor law fails to cover domestic workers or splits hairs between those who live inside and outside the family’s home, it is near impossible to recoup money.

She became involved with Domestic Workers United, a group started in 2000 that has been lobbying Albany for a bill to provide basic labor rights to these employees.

Since the bill’s first introduction in 2004, the legislation got little traction. But last year’s Democratic takeover of the State Senate brightened prospects when Staten Island State Sen. Diane Savino, a former labor leader, became the main sponsor. However, the coup this past June and month-long stalemate that ensued have shelved progress until the next session this September, at the earliest.

Depending on which bill makes it to the governor’s desk (see box)—the meatier Senate version, the basic legislation proposed by the Assembly or a combination of the two—the law aims to drastically change working conditions for a majority of nannies in the city and surrounding suburbs. The state’s labor department and the attorney general would have enforcement power over these new laws, and could prosecute employers who stiff their nanny. Most nannies are undocumented workers and thus most vulnerable to mistreatment because they are reluctant to report abuse and risk exposing their immigration status.

Workers march on the Upper East Side on April 25.

The bill legally defines a domestic worker as a person of legal age who cares for a child or elderly person in someone’s home, so as to not inadvertently cover babysitters and minors. Rights outlined in the legislation will likely include a guarantee of at least one day off a week, sick days, a yearly weeklong vacation, paid holidays and time and a half for overtime.

“We’re not asking for more than any other worker,” Patricia said.

Actually, they are not asking for anything more than the rights already given to the small percentage of legally documented nannies who are placed through agencies (a Domestic Workers Union study found that only 16 percent of those surveyed were placed through an agency).

The New York Nanny Center, Inc., for example, screens both the families and the nannies and draws up an agreement between the two before the match is made. This agreement spells out the number of days the nanny will work with a maximum of five days a week, responsibilities, two weeks paid vacation and major holidays, plus any other conditions the nanny and family want to make.

“I think that in most licensed agencies, there is an expectation that there is a fair job description for the nanny,” said Carol Solomon, director of the New York Nanny Center, Inc. “Agencies are trying to establish what’s fair for everybody so nobody is taken advantage of in these situations.”

The change would be a significant one for non-agency nannies. Domestic Workers United released a survey that showed that the majority of nannies interviewed don’t get overtime pay, health insurance or contracts that outline their responsibilities. The survey is one of the few glimpses legislators in Albany have into this profession, because the government provides so few statistics.

“The workforce isn’t registered anywhere,” said Ai-Jen Poo, lead organizer for Domestic Workers United. “All this invisible labor…is not accounted for and makes it difficult for us to advocate for protection because it’s not even seen.”

In an April rally at the Capitol, author Barbara Ehrenreich, who documented her own undercover work in unskilled professions, held a press conference to promote the cause. Former nannies gave testimonials about their mistreatment, and some even showed legislators photographs of physical abuse victims.

“We had to educate them on exploitation and present cases to them,” said Joycelyn Gill-Campbell, a former nanny and full-time organizer with Domestic Workers United. “Give them first-hand information.”

Passing a law is only the beginning, though, as enforcing regulations that govern workers inside the home could prove problematic as well. The bills currently under consideration would have the state labor commissioner report on the feasibility of implementing paid vacation and sick days, severance pay, collective bargaining and other provisions for domestic workers. A state task force would also be created to study how to reach out to employers and nannies.

Domestic Workers United, the lead group lobbying for the law, also plans to launch an education campaign with help from the state’s justice department.

“We have to do creative outreach. We have to work with churches and synagogues,” Poo said. “The industry is very decentralized.”

Perhaps it is unfathomable for famously liberal Manhattanites to deny supporting paid time off and overtime for their nannies. There are many that do so already. While the new law would hit families in the wallet at a time when they may be evaluating if they can afford such help at all, the benefit would be clear rules on paying and treating nannies, decreasing reliance on parent blogs, forums and neighbors for second-hand, unverifiable advice. Online communities are rife with questions about paying a nanny on the books, when to give raises and compensating nannies who accompany the family on a vacation.

“There are people—Mr. and Mrs. Smith who hire a housekeeper and nanny—who feel the work they do is so vital to their family and that they deserve basic protection under the law,” Poo said. “People won’t have to go to friends or chat rooms to find out what is fair.”

*Pseudonyms were used in this article to protect the identity of nannies who are employed or looking for work.

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The Bills at a Glance

State Senate Bill
• At least one day off a week; the employee can choose to work that day, but at an overtime rate
• Six paid holidays
• Seven sick days
• Five vacation days
• Employer must give a two-week notice of termination
• Imposes civil fines or imprisonment
• Allows domestic workers to sue for underpayment or lost wages; the attorney general or Department of Labor can bring a lawsuit on behalf of a domestic worker

Assembly Bill
• Overtime pay after eight hours of work per day
• At least one day off a week
• Grants disability insurance to part-time domestic workers
• Collective bargaining rights
• Gives the Department of Labor and domestic workers wage and hour enforcement powers
• Directs the Department of Labor to form a task force to educate domestic workers and employers on new law