From a thousand miles away Cindy Dockrell, 53, is slowly becoming her mother Joanne's caregiver. Foot surgery and pain in Joanne's hips made it nearly impossible for the 78-year-old to climb the stairs of her split-level house. So Cindy was pleased when her mother decided to move from Macon, Georgia, to Newton, Massachusetts, close enough for Cindy to take care of her — a big role reversal for both of them.
"She'll depend heavily on me," says the mom of two and part-time writer. "It's a sobering thought."
No one sets out to be a caregiver, but a 2004 study by the National Alliance for Caregiving and the AARP reveals that more than 44 million Americans provide unpaid care to another adult, and almost 80 percent of those being cared for are over age 50. The typical caregiver in the United States is a woman, about 46 years old, who spends an average of 20 hours or more each week caring for her mother. Most caregivers also work at least part time, and more than a third have children living at home.
"What makes caregiving incredibly challenging is that it's so hard to take a break," says Linda Rhodes, EdD, author of Caregiving As Your Parents Age (New American Library). "You're juggling other family and work demands. Finding services is often confusing. And given how fast an older person's health status can change, it's no wonder caregivers suffer from high stress and put their own health at risk."
Whether you care for an aging parent at home or provide care from a distance, here are common pitfalls to avoid and key steps to giving everyone, including yourself, the best care possible.
Mistake #1: Trying to Do It All Yourself
Maybe you feel that tending to your parent is your responsibility, but the fact is, it's too big a job to do alone, says Paul Hogan, founder of Home Instead Senior Care, a nonmedical care service, and a former family caregiver himself. "If you get help from the start, caregiving will be a better experience," he says. To get others to pitch in:
Assign Jobs to Family and Friends
Delegating even small tasks will lighten the load, so ask your brother to handle Mom's taxes or your sister to pick up groceries. During holidays suggest that someone come by to watch Dad for a weekend so you can take a break. Keep a list of simple chores people can do to help, suggests Donna Schempp, program director for the Family Caregiver Alliance in San Francisco. When a friend offers, you'll be ready with a task.
Joanne Cunningham, 41, of Delmar, New York, lives close to her parents in nearby Utica and helps her dad look after her ailing mom, who has Alzheimer's. But she shares the work with her five siblings, an aunt, and a family friend: Her aunt takes her mom to a fitness center and to play cards. The friend takes her mom to lunch once a week. All six siblings rotate visits and take turns calling their parents to check in every day. "You have to create a network," says Joanne, a mother of four.
Join a Support Group
Talking to other caregivers can be a source of practical information and comfort. "Nobody at a support group will judge you when you say you're too tired, angry, or frustrated," says Stella Henry, RN, cofounder and director of Vista del Sol Care Center, an assisted living and nursing home facility in Culver City, California. Check your local hospital for support groups.
If you can't attend one, find support online at organizations such as the Caregiver Media Group (caregiver.com), the Alzheimer's Association (alz.org), or AARP (aarp.org/boards). You can also connect by phone: For a $10 registration fee and a $15-per-session charge, you can participate in telephone support groups with other caregivers and professionals through Caregivers' Connections (877-819-9147), a program run by DOROT, a New York City-based organization for seniors.
Involve Your Kids
Rather than view your "sandwich" situation as a problem, consider your children as another source of help. A young child can watch TV or play cards with Grandma, while an older teen can help prepare meals. Since it's easy for a kid to get upset if you devote more time to Grandma than to him, Rhodes suggests explaining the situation this way: "Grandma did all these things for me. Now it's my turn to take care of her. Maybe there's something you can do for her too."
Mistake #2: Neglecting Your Own Well-Being
"Women who have multiple roles — as parents, spouses, employees, and caregivers — often have little time to care for themselves or take a break," says Richard Schulz, PhD, a professor of psychiatry at the University of Pittsburgh who has done numerous studies on caregiver stress. Research shows that caregivers are at greater risk for depression, stress, and poor health than adults who don't provide care.
"Giving and giving and giving, and not taking care of yourself won't benefit anyone," cautions Suzanne Mintz, cofounder and president of the National Caregivers Association in Kensington, Maryland. To ensure you stay well:
Carve Out Regular "Me" Time
Mintz, who cares for her husband with multiple sclerosis, is adamant about getting manicures. Joanne Cunningham escapes to the gym every day at lunch. Laura Broadwell, 49, a single mom and editor in Brooklyn who helps care for her mother with dementia, says, "It took me more than a year to give myself permission to sit on the couch and read a book. I had a hard time allowing myself any pleasure. But not losing myself in the caregiving role is crucial to my survival."
Enlist your friends to routinely invite you out for pizza, go for an evening walk or to a book group, so you can destress. Also, don't let caregiving usurp all your time with your kids. Do your best to maintain important — and comforting — family rituals, like heading to the park on Saturday mornings.
Adjust Your Work Hours
Studies show that having a job can buffer you from the stress of caregiving. But sometimes you may need to cut back your hours or change your schedule to accommodate family demands. If you need time off, consider taking advantage of the Family and Medical Leave Act, which allows eligible employees to take up to 12 weeks of unpaid leave while retaining their health benefits and job.
Mistake #3: Overlooking Community Resources
Carol Bradley Bursack of Fargo, North Dakota, cared for seven different relatives, including her parents, over a 20-year period, while also raising two sons. Until her relatives died or went into nursing homes, she did almost everything herself. "I was so obsessive about doing it all and trying to give them a better quality of life that I never thought to look around for help," says Bursack, author of Minding Our Elders (McCleery & Sons) and a newspaper columnist who writes on elder care. Today, although there is an entire industry designed to provide support, fewer than half of caregivers ever tap into such services, according to the National Alliance for Caregiving report.
Local organizations, churches, synagogues, and senior centers offer numerous services including hot meals, transportation, and home repair. To start, visit the National Association of Area Agencies on Aging at n4a.org, or call your local office listed in the white pages. Take advantage of respite care, which can be short term, like adult daycare at a senior center, or extended, such as a week for your loved one in an assisted living facility. To find a service, use the Eldercare Locator at eldercare.gov, or call 800-677-1116. Also, check out the National Family Caregiver Support Program, run by the U.S. Administration on Aging (aoa.gov), which may in some states provide financial assistance for respite or personal care.
Consider a Geriatric Care Manager
Usually a social worker, gerontologist, or nurse will do an assessment of the elderly person, then design a plan to help with the care. A care manager can be enlisted for advice with a short-term crisis or for a longer term, says Bob O'Toole, a board member of the National Association of Professional Geriatric Care Managers. He or she may be especially helpful when the elderly relative lives far away and the caregiver is unfamiliar with local services. These professionals charge $70 to $150 an hour, depending on the region. For more information, visit caremanager.org, or call 520-881-8008.
Enlist Nonmedical Senior Care
There are private duty agencies that can help with daily chores. "I used them when Mom was recovering from the flu," says Linda Rhodes. "They did her grocery shopping, made her meals, picked up her medications, and even played cards with her." The cost will vary depending on the agency and location. Home Instead, for example, charges $12 to $22 an hour, with overnight services costing $125 to $175 for a 12-hour shift. If you do use an agency, make sure the caregivers are employees, not independent contractors. "Independent caregivers become your employees, and you may be responsible for workers' compensation insurance and taxes," explains Scott Baumruck, executive director of the National Private Duty Association. To learn more about this service, log on to privatedutyhomecare.org.
Mistake #4: Not Knowing What Your Parent Needs or Wants
The conversation is not always easy, but talk to your aging relative about her wishes. "Don't get in the position of making every decision for your parent," advises Rhodes. "Most people still want to live independently." To gain a clearer sense of your loved one's needs:
Get a Geriatric Assessment
A head-to-toe checkup can separate a relatively simple nutritional deficiency from a clear case of dementia. Knowing your loved one's health status will help you better understand his needs.
Meet Your Parent's Doctors
If possible, accompany her on a visit. Also make sure you have access to your loved one's medical records. Have your parent draft a letter or fill out a form that gives you permission to obtain medical information about her.
Respect Your Parent's Wishes
Sometimes in the quest to provide quality care, caregivers try to impose what they think is best, instead of considering what their loved one wants. Elizabeth Matthews, a pediatrician in Albuquerque, New Mexico, and her husband wanted his elderly parents to either move closer or get help with housekeeping or transportation. But Elizabeth's in-laws refused, despite her father-in-law's Alzheimer's and her mother-in-law's chronic leukemia. It wasn't until July 2005, when her mother-in-law died, that her father-in-law finally moved in.
"It was hard to see them struggle when we knew it could be easier," says Elizabeth, 54, a mother of two. "In the end we had to let things go and not be so controlling, which eased our own mental stress. We had to respect their wishes for autonomy and control. Even if they were in poor health, it was still their life."