Michelle Booth of Foster City, California, moved in with her parents 10 years ago, her three-year-old daughter in tow. Her parents were both in their late 70s, but they had the strength and the good health to be helpful, doting grandparents. That was years before her father suffered several strokes and before her mother developed Alzheimer's disease.
Booth still lives with her parents, but she's the one providing all the support. "They were a great source of help to me," she says. "Now the roles are reversed."
Her father now moves at a "turtle's pace" even with his walker. And her mother can't always remember her daughter's first name. With their deteriorating health, caring for them became a 24-hour, one-woman job. Booth's four siblings are scattered from Israel to Honolulu, and none of them was able to offer much help. And even as Booth became overwhelmed and exhausted, she was reluctant to ask anyone else to lend a hand. "I took this on voluntarily," she says. "I wasn't ready to say that I couldn't handle it."
When being a hero works against you
Millions of Americans have taken on the immense responsibility of caring for an aging parent or a spouse. Caregivers have many options for help -- including adult day care programs or home health workers -- but far too many try to tackle the job alone, says Donna Schempp, LCSW, program director of the Family Caregiver Alliance, an organization based in San Francisco. "They don't look for help until they're desperate," she says.
Over the years, Schempp has worked with many caregivers who have pushed themselves to the edge of desperation and beyond. Even as their own physical and mental health started to erode, they wouldn't ask for or accept assistance.
Such dedication is heroic, but it's also counterproductive, Schempp says. Caregivers who do everything themselves end up shortchanging their loved ones as well as themselves, she says. "Caregivers who don't get enough help tend to lose their patience and their understanding," she says.
At first, the task of caring for a parent or spouse may seem manageable. "People just sort of fall into this without thinking about the long term," Schempp says. "You start doing small things for someone. And then you do a little bit more until it becomes apparent that they can no longer care for themselves."
As the job gets more and more demanding, a sense of loyalty and duty can keep a person from asking for help, Schempp says. For both spouses and children, the reluctance to seek help often boils down to one key concern, she says. "People always say 'nobody can care for this person the way I can,'" she says. "And that's probably true. But different isn't necessarily bad."
Money is also an issue. Caregivers may assume that they could never afford outside help, even though there may be low-cost options available, such as adult day care. In most cases, however, caregivers who try to do everything themselves aren't trying to save money, Schempp says. They're simply trying to do everything they can, even if it's too much.
Reducing sibling stress
Many caregivers are lucky enough to have siblings or children who can share much of the load. Even in the best-case scenarios, though, it usually takes a little nudging to encourage a relative to help, Schempp says. In too many cases, one family member seems to end up doing all (or nearly all) of the work.
Siblings and other relatives can often be surprisingly helpful if a caregiver finds the right way to ask. The Family Caregivers Alliance recommends staying assertive without being hostile or accusing. And if a relative declines an offer to help, don't be afraid to ask again. If siblings are unable to help with caregiving because they live far away or have other obligations, you could still ask them for help with such things as finances and legal issues.
In Caring for Yourself While Caring for Your Aging Parents, author Claire Berman writes that communication is the key to shared caregiving. After spending many years caring for a widowed mom with Alzheimer's, and a sick, frail mother-in-law, she has developed some rules for reducing the stress between caregivers and siblings. Don't necessarily expect anything, she advises; that way you won't be crushed if it doesn't happen. She also advises caregivers to be responsible, very clear about their abilities, open, honest, and forgiving.
In addition, she says, make sure you appreciate the good things your siblings do. ("Thanks for visiting Mom," she suggests, rather than "So you finally visited Mom -- it's about time.") She advises primary caregivers to always keep their siblings informed about what's going on, so they won't develop their own resentments. Also, let them have their say, and accept that you may respectfully disagree over the best way to care for your parents.
Getting the help you need
It's especially important not to let resentments fester. If conflict is building up, Berman says, a family conference can make a big difference. Her book quotes the respected geriatrician Robert Butler, who says caregivers might want to "send a thoughtful letter, laying out the circumstances: 'When you guys call, frequently Mom sounds pretty good. But here's the usual day.' Describe your day and what you have to confront. Then lay out an agenda: 'Here's what I would like us to talk about.'"
The actual call, Butler says, may involve legal, financial, and personal issues. If you've had to miss a lot of work and pay for your parent's medications, food, and other expenses, he advises telling your siblings: "I'd appreciate it if you'd consider sharing this financial burden with me." You could volunteer to send bills for a given month, or estimate the cost of your lost productivity, or ask about sharing the cost for an in-home health aide. He suggests saying something like: "When can you make visits or have Mother visit you? Let's make a schedule, because time [for visiting] is short."
If relatives live nearby and drop in sporadically, consider asking whether they can commit to a certain schedule, while being free to visit anytime. If they're uncertain about what to do, you might want to make a specific list of the chores or errands they could help with. These might include grocery shopping, picking up medications, doing the laundry, or simply volunteering to stay at the house while the caregiver gets out for a couple of hours. Be as specific as possible: "Could you drive dad to his weekly doctors appointments?" is more likely to get a positive response than "It would be great if you could pitch in once in a while." Potential helpers can look over the to-do list and pick something that works for them.
Looking beyond the family
Caregivers may need to look beyond their immediate family to find willing helpers, Schempp says. Neighbors, other relatives, and friends -- particularly those who have served as caregivers -- may be more than willing to pitch in. But when caregivers need more help every day, they may have to start looking into more formal, professional options.
But first, caregivers need to take a thorough inventory of their needs once again. If they simply need someone to pitch in with the laundry and meals while providing a little companionship, they don't necessarily need to find someone with extensive training. (A kind heart is still mandatory.) Some caregivers in this situation find excellent in-home help through churches or senior centers.
One of the best ways to find help is through word of mouth. You can often find a referral through friends or relatives, or you can ask your loved one's health-care provider if they have referrals. If there's a support group in your area for caregivers, that group may have referrals for reliable people and agencies they've used. The other approach is to contact a home-care agency. A reputable agency will perform thorough background checks on all of its employees, but they charge extra for their services. Some doctors may also be able to refer you to social workers who can help.
Finding the right services or combination of services can be a challenge. Fortunately, there are people who can help caregivers make the tough choices. They're called "professional case managers," and they work with families, physicians, and local agencies to find the best care options. In many cases, the cost of hiring a manager may be covered by Medicaid or Medicare. Local charities may also provide case managers at little or no cost. Caregivers can find case managers and learn more about care options by contacting the local Area Agency on Aging. (http://www.eldercare.gov)
When Booth finally realized that she couldn't do everything on her own, she turned to a local adult day care program, another valuable resource for caregivers. This particular program was recommended by hospital staff after her dad had one of his strokes. She drops off her mother and father in the morning and picks them up in the afternoon. Not only do her parents receive quality care and close supervision during the day, they also enjoy the chance to get out of the house and socialize with other people their age. The program gave Booth a chance to give more time to her home-based business, selling orthodox Jewish items over the Internet. More important, she finally had the chance to enjoy quality time with her daughter.
Booth fears that her parents won't be able to live at home much longer. As their health declines, they'll eventually need nearly constant medical care. For now, she's grateful for every day they're around -- even if she does need a little extra help.
Area Agency on Aging.
For information on support groups, respite providers, and other caregiving services, use the AAA's Eldercare Locator: (800) 677-1116
Family Caregiver Alliance.
Interview with Michelle Booth, caregiver.
Interview with Donna Schempp, Family Caregiver Alliance.
Family Caregiver Alliance. Community care options. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=394
Family Caregiver Alliance. Hiring In-home help. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407
Family Caregiver Alliance: A Guide to Taking Care of Yourself, http://www.caregiver.org/caregiver/jsp.cotent.node.jsp?nodeid=784
Family Caregiver Alliance:Caregiving and sibling relationships:challenges and opportunities http://www.caregiver.org/caregiver/jsp.cotent.node.jsp?nodeid=868
Berman, Claire. Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive. Henry Holt.