What the research says about family caregiving, including pros, cons, rights and reimbursements.
Your six months of maternity leave are over and you have to go back to work.
The thought of leaving your baby is painful, but you are looking forward to the adult interaction and stimulation you'll encounter in your workplace. Fortunately, you don't have to leave your child with a stranger. Your mother lives nearby and is willing to care for her while you are working.
Having someone you trust as your caregiver makes the separation easier. And, according to a recent study, over 21 percent of families of preschool children whose mothers are employed rely on care by relatives -- either in the child's home or the relative's home -- while the mother works. For 17 percent of these families, says an article in Policyalmanac.org, fathers care for the children while the mother works.
But caring for children is only one type of care that family members provide. On the other end of the age spectrum, many family members provide care for their aging parents, usually in addition to holding a full-time job and having children of their own to care for. In fact, the typical caregiver is a 57-year-old woman with older teens of her own at home.
Pros and cons of using family members as caregivers
When trusted and loving family members provide care, the pros are significant. Most important, worries about your child's or elderly parent's safety are greatly lessened; you know the care will be high quality and that you can rely on the caregiver to show up when she says she will. As a family member, the caregiver has a strong attachment to the child or elder and will usually do what she can to accommodate unexpected changes in scheduling that seem to arise in life -- which can make a tremendous difference for you.
For Jessica Williams, a 29-year-old mother of two, both under the age of 4, family caregivers are a lifesaver. Williams had her older son in preschool and her younger in family day care, which enabled her to work in her family's business. But when her day care provider needed surgery, Williams scrambled, and her large family came to the rescue. Her mother-in-law came for a week; her mother filled in for another week; she and her husband took turns staying home for another week; and nieces and nephews who were home on vacation filled in for another week. "I don't know how we would have managed without their help," Williams says. And another benefit is that often, the family caregiver will provide this care at no cost or at a much more reasonable price than you could find anywhere else. Williams' mother and mother-in-law each refused to accept money for the care they provided.
"Trust and compatible values are what have been best about using family as care providers for my children," says Felice Bochman, mother of two, who has used both family and non-family as child care providers. When she has family members caring for her kids, Bochman doesn't worry about them at all, but in the past, when non-family members provided care, unanticipated issues have arisen that have made her uncomfortable about her choice of caregiver.
Candace Gould, a licensed mental health counselor with Jewish Family and Child Services in Boston, reports that family caregivers providing care for elderly relatives have said things like:
In fact, a recent study confirms Gould's observations. According to Caring Today, about 80 percent of family caregivers feel the experience is "emotionally rewarding" -- particularly the bonding that occurs -- despite having had negative expectations -- a fear of feeling overwhelmed -- beforehand.
On the negative side, the burdens of caregiving can lead to resentment, burnout, and friction among family members, especially when the primary caregiver feels that others don't help enough. And in some families the stress of providing care on a regular basis can lead to the resurgence of old family patterns, with one child again being labeled as the good child, another as the favorite, and another as the irresponsible one.
Burnout can occur if a person provides care in addition to working and parenting, or if the caregiver devotes herself to caregiving on a full time basis and has no time for herself. Far too many caregivers have excessive expectations of themselves, leading to feelings of guilt and inadequacy, despite their devotion to their tasks.
Gould says the following quotes illustrate what she hears about the negative aspects of family caregiving:
For Williams, the negatives of family as caregivers are that she feels guilty that her relatives are helping her so much, and she is indebted to them in ways that she can't pay back. Also, her mother spoils the kids when she has them, letting them eat whatever they want, while one of her nieces lets them watch whatever they want on TV for as long as they want. But for her, the positives far outweigh the negatives.
In all these cases, negotiating caregiving relationships with family members can be a bit awkward. They aren't hired help, as they are still your beloved family member. And yet you want to agree on responsibilities and expectations, safety limits, and more. You want your preferences to be followed and your prohibitions to be adhered to. All of this falls into a grey area at the moment, a murky river through which each family seems to wade in its own way.
While Williams may appear to be uniquely fortunate, not so long ago living close to extended family members and giving and receiving this type of support was the norm. Perhaps with the growing need for family caregivers throughout our nation, some incorporation of older family patterns, or creative substitutions for them, will emerge.
- "My mother has so many needs since she has been diagnosed with Alzheimer's, but I wouldn't have missed a minute of the precious time we now spend together."
- "I spend a lot of time organizing medical appointments and facilitating care for my aunt. She has a wonderful and wise attitude, accepting the limitations of her age and medical challenges gracefully. I am so proud of her."
- "I'm on call 24 hours a day, and I no longer have a life!"
- "I feel pulled in a million directions. Either my father needs me to accompany him to a doctor's appointment, my kids need a ride to soccer practice, or my husband wants a few minutes to discuss finances."
What the research says about family caregiving
As we live longer now, the typical American woman will spend 18 years of her life caring for an elder, the same amount of time she will spend caring for a child, according to Janet A. Clark and Katherine A. Weber of the Missouri Department of Human Development and Family Studies in an article published by the University of Missouri Extension.
Clark and Weber also predict that in the U.S., more than half of those over age 85 will need some help, whether in toileting, eating, dressing, or more. Meanwhile the number of those 85 and older more than doubled between 1980 and 2000 and is expected to continue to increase rapidly.
To further complicate matters, divorce has made the job of caring for elderly parents even more complex. While in the past an adult child could usually care for her parents in the same dwelling, that is often not true today. Frequently, say Clark and Weber, the parents live in separate locations, perhaps even opposite ends of the country. And because the adult children themselves may be divorced, they may not have a co-parent to watch their children while they care for their parents.
How many people are providing care for family members? Each year, over 50 million Americans provide care in some way, comprising 80 percent of all home care services, says the National Family Caregivers Association. Of these family caregivers, 48 percent work full time. The value of this care is estimated to be more than $306 billion per year.
In 2000, adds the national Family Caregivers Association, over 1 in 4 adults (26 percent) cared for chronically ill, disabled or elder family members.
Interestingly, it's not only adult children or spouses who provide this care. Grandchildren provide about 8 percent of informal care, while adult children comprise 37 percent of informal caregivers, a 2003 study by FACCT and The Robert Wood Johnson Foundation found.
About.com: Child Care reports that 47 percent of grandparents who live near their grandchildren provide some sort of child care assistance to their adult children.
In fact, the U.S. Census Bureau states that:
How much child care do these grandparents provide? According to an AARP article, "Providing Childcare for Grandchildren", grandparents spend a significant amount of time caring for their grandchildren.
- Elder care numbers
- Child care numbers
- Grandparents provide childcare for nearly a quarter (23 percent) of children under the age of 5, and that number goes up -- to 34 percent -- if the children live only with their dads.
- For Hispanics, the number of grandparents providing childcare rises even higher, with 38 percent of Hispanic preschoolers having grandparents who provide childcare for them.
- Nearly one quarter (24 percent) watch grandkids between 10 and 29 hours a week.
- 7 percent spend more than 30 hours a week with their grandchildren.
Financial effects of caregiving by family members
According to "Family Caregiving in America: Facts at a Glance":
- On average, family caregivers spend 21 hours per week on caregiving.
- Almost one-fifth of family caregivers (17 percent) provide constant care of 40 or more hours a week.
And the financial cost of caregiving is quite significant. Jane Gross reporting for the New York Times, (Nov. 19, 2007), says that:
- Family members spend an average of $5,531 on out-of-pocket costs caring for an aging parent or spouse who lives nearby.
- Family members spend even more -- an average of $8,728 -- if the parent or spouse does not live near by, comprising an average of 10 percent of their family income.
AARP reports that about 12 percent of women give up their jobs in order to perform the necessary caregiving, with stark financial consequences. And even if they don't leave their jobs, there are still serious consequences which include reduced wages, loss of job security and the loss of or a reduction in employment benefits, usually at a time when the caregiver especially needs them.
For those with the most intense level of caregiving responsibility:
- 92 percent report major changes in working patterns for their regular jobs
- 83 percent arrive late, leave early or take time off during the day
- 41 percent report taking a leave of absence
- 37 percent shift from full to part-time work to adjust for their caregiving responsibilities.
Additionally, the caregiver's own health is often at risk as a result of this burden: they are more likely to have chronic health conditions and medical debt than non-caregivers.
Rights of family caregivers
What rights do caregivers have? Increasingly society is recognizing the needs for care givers to take care of themselves, in addition to others.
In Caregiving: Helping An Aging Loved One (AARP Books, 1985), Jo Horne includes a caregiver's bill of rights, in which she emphasizes the need of caregivers to take care of themselves and to protect their "individuality" -- to make a life for themselves that will sustain them after their loved one no longer requires their help.
Since the burden of caregiving -- both in time and expense -- can be staggering, says AARP, Congress has tried to provide both financial reimbursement and respite care (which gives the caregiver a break that will hopefully enable her to continue to provide that care, without becoming too burned out). The National Family Caregiving Support Program was passed by Congress in 2000 to allocate funds to state and local health care agencies to establish and maintain support services for long-term care, such as support and training groups, but unfortunately has not received funding thus far.
State financial reimbursement to caregivers
Recently, some states have begun paying family members other than spouses to provide the care necessary to keep an elder at home. Although the pay often amounts to less than the caregiver would make at work, it can help with some expenses. States have also begun to reimburse home care on the same level that they reimburse institutional care. In those states that offer this type of reimbursement, it's very helpful to family caregivers. Also determined on a state-by-state basis is payment for respite care.
To find out about the policies in your state, contact your local representative, your Council on Aging (see Council on Aging or call HIDDEN for National Association of Area Agencies on Aging), or your local senior center. You can also check the U.S. Administration on Aging's eldercare locator, which will link you to services in your area.
Legal protections for caregivers
Under the this act, covered employees (full time, who work for companies employing 50 or more people for 12 months or more) can take up to 12 weeks of leave annually to deal with personal or family medical issues, pregnancy, or adoption. While this leave is unpaid, the employee does continue to receive health care benefits. And when the leave is over, the employer must give the employee the same or an "equivalent" position, with the same or similar salary, hours, work responsibilities and job security. Employees who feel they have been discriminated against can sue for lost wages and other damages, says findlaw.com.
As the number of caregivers goes up, so does the number of employees affected by this need. Increasingly, the courts are protecting workers who claim they are being discriminated against for needing to take time to provide care, either in jobs they already have or when they apply for jobs. And some states now allow family caregivers to receive unemployment benefits if they are unable to work certain shifts due to their responsibilities.
All in all, family caregiving affects nearly every American family, or will in the future. How we care for our caregivers will be increasingly important as the percentage of elders rises and a smaller number of adult children provide the care. Similarly, grandparents and other relatives provide an important support to working parents, and without their help many parents would find it impossible to work. Learn how to be a Fair Care Employer.
Currently family members often live far from one another, but as the caregiving burden increases, it is possible that at least some may reconsider and make an effort to live near each other to ease that burden. In fact, as baby boomers have grandchildren, many are choosing to move near them so that they can help with childcare. And as the parents of baby boomers age, many are choosing to move closer to their children to facilitate caregiving.
- Coverage and application of the Family and Medical Leave Act
Ronnie Friedland is an editor at Care.com. Previously she edited three books on parenting and interfaith family life.