The Distance Struggle
For 10 years, Kathy Waite shuttled almost 500 miles between San Diego and Northern California to help care for her aging mother. In a typical year, she made the trip three or four times, sometimes flying, sometimes driving. Last year, as her mother's needs increased, Kathy, now 58, realized she could no longer juggle her job, the constant worry, and the eight-hour trips. So she took early retirement to live with her 86-year-old mom.
"I was able to do this, but it's very difficult for the people who can't," she says. "My mom was changing so much that I wanted to spend some quality time with her."
The long-distance caregiving that Kathy managed for a decade isn't a rarity. A survey cosponsored by the National Council on the Aging (NCOA) and The Pew Charitable Trusts shows that more than 7 million Americans have become long-distance caregivers -- those who manage care for a relative aged 55 years and up who lives at least one hour away.
"We expect that the number of long-distance caregivers will continue to increase as baby boomers and their parents age," says James Firman, EdD, president and chief executive officer of NCOA.
Although caring for an aging relative is a challenge in the best of times, it's doubly so when it's done across the miles. "It's much harder when you can't see your relative," says Linda Rhodes, EdD, a former secretary of aging for the Commonwealth of Pennsylvania, adviser to Home Instead Senior Care services, and author of Caregiving as Your Parents Age. "You're always struggling to figure out when you need to be there in person," she says.
Caring for Aging Parents Long-Distance
Strategies that can help:
- Plan before a crisis. When it comes to long-distance caregiving, you need to plan for the unexpected. Your next visit can offer a prime opportunity to do some preparation. "While you are there, you need to set up a support system of friends, relatives, and neighbors," says Rhodes. Get to know your parents' friends and neighbors so you can call them when you need someone to look in on your parents. Also get to know their doctors, and especially the nurse who manages the doctor's office.
- Get a copy of any essential medical, financial, and legal information. These include Social Security numbers, health insurance policies, medical histories, wills, power-of attorney paperwork, and healthcare proxies, all of which might be needed in an emergency. The Family Caregiver Alliance (FCA), a national nonprofit organization that provide information and support for caregivers, has developed a form to help you record this information. Find it on the group's Web site www.caregiver.org or get it by calling 800-445-8106.
- Sit in on a doctor's appointment. Get a diagnosis of your relative's physical and mental problems, including a thorough assessment of what he or she can or cannot do independently. "Make sure that this is done by someone who specializes in geriatrics and understands the physiology of an aging person," says Rhodes. To get an assessment, ask your relative's primary doctor for a geriatrician. Some university-based hospitals offer geriatric teams that conduct assessments. Make an appointment and accompany your parent to the examining room; otherwise privacy rules may prohibit the doctor from discussing medical information with you.
- Involve your parent. "One of the most important things you can do is to honor your parents' independence and remember that they are adults. I don't think you can ever parent your parent," says Rhodes. "You need to allow them the freedom to remain themselves and make their own decisions, even wrong ones, as they age. If dementia is involved, that becomes quite a different matter." Rhodes admits she has her own feelings of trepidation when her 84-year-old father insists on driving his tractor. But that doesn't mean she tries to stop him from doing something he deeply enjoys.
- Involve the rest of your family. In most families, one person assumes primary responsibility for caregiving, but long-distance caregiving is more than a one-person job. Whoever takes on this responsibility needs to call on other family members and friends. Caroline Hoyt of Scranton, Iowa, found an effective and novel way to do this. A few years ago, she started an "Adopt Grandma B." club to involve other family members in the care of her 90-year-old mother. Relatives committed to "adopting" Hoyt's mother for a monthlong period. During that month, the assigned family members called Grandma B. regularly. They also sent small packages containing such items as food, tissues, stamps, and other necessities. And, when possible, they visited. "It was a huge hit," says Caroline. "I even had a few friends who took on the idea for their parents."
- Identify community resources. Most communities have volunteer resources that are sponsored by senior centers, churches, and synagogues. Yet many caregivers don't know about these invaluable resources. "Even the mail carrier is in a position to know if Mom or Dad has stopped picking up the mail," says Rhodes. Your local area agency on aging, which can be found through the U.S. Administration on Aging's Eldercare Locator (800-677-1116, www.eldercare.gov) can help you identify programs in your area including Meals-on-Wheels and Friendly Visitor programs. So can an NCOA Web site, www.benefitscheckup.org.
- Get professional help. A growing field of professionals can help you care long distance: geriatric care managers. Part social worker, errand-runner, family counselor, surrogate family member, and crisis worker, a geriatric care manager helps plan and manage care for older people, often overseeing household, financial, legal, health, insurance, and family issues. "It's a one-to-one person you can call whenever you need," says Cathy Cress, author of the Handbook of Geriatric Care Management and president of Cresscare Case Management Agency for Elders in Monterey, California. Geriatric care management is not a well-known service, nor is it regulated. And care manager services aren't cheap. The national average is about $85 an hour -- a cost not covered by Medicare but perhaps by long-term care insurance. "For people of modest incomes the cost is not inconsequential," says James Ledesma, 62, who, as a diplomat living on the East Coast, hired a care manager for his 89-year-old father on the West Coast. But it can be well worth it, especially if you split the costs with siblings. For more on geriatric care managers, contact the National Association of Professional Geriatric Care Managers, Inc. (520-881-8008; www.caremanager.org), which offers a national directory.
- Maintain balance. Caregiving can have an emotional and physical toll on caregivers, especially when done at a distance. One survey showed that 79 percent of caregivers report that it impacts their life negatively and 25 percent actually see their own health deteriorate. As much as possible, you can't let that happen. "When you become a caregiver, someone is counting on you," says Alexis Abramson, author of The Caregiver's Survival Handbook: How to Care for Your Aging Parent Without Losing Yourself. "The best way to ensure that you don't let them down is to take care of yourself. This means eating right, getting adequate rest, building exercise into your schedule, and keeping up with your own medical appointments." You also have to take time for yourself. "You not only deserve a break, you need one," says Abramson.
A Visit with Purpose
Make the most of visits to an elder in need of help by employing these strategies:
- Schedule an appointment to accompany your relative on his/her doctor visit.
- Check to see if bills are being paid on time.
- Replace all regular light bulbs with the long-life kind.
- Get rid of excess clutter, particularly anything on the floor.
- Check the refrigerator to see if there are expired foods. Many seniors end up with food poisoning because they don't check labels.
- Take care of minor maintenance tasks.
- Make sure your relative can still drive safely by accompanying her on a short drive to a nearby store.
- Make sure the car has been inspected and is being properly maintained. Take care of any repairs, like changing the oil and checking the brakes and tires.
- Check smoke detectors and replace the batteries if you're unsure when they were last changed.
- Introduce yourself to neighbors and friends so they have a face to put to your name if you ever need to call on them.
- Leave a key and your phone number with a trustworthy neighbor.
- Pick up a copy of the local phone book, complete with Yellow Pages, and take it home with you.
Originally published in Better Homes and Gardens magazine, April 2005.