Issue Date: February 4, 2007
SPECIAL HEALTH REPORT
Far from home?
You still can care for your aging parents. Dr. Tedd shares the story of keeping a close watch on his terminally ill mother, despite the miles between them.
By Dr. Tedd Mitchell
Next month, look for the third installment of USA WEEKEND's special health series. Dr. Tedd Mitchell will reveal how you can help your family members get fit and manage their weight.
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My mom was diagnosed with uterine cancer. She had surgery and was told there was a 50/50 chance it would remove all the cancer. Despite my family's hopes, the surgery was not a success: Several months later, the cancer had spread. Because that particular type of cancer is not amenable to radiation or chemotherapy, my mother decided the best course of action would be to go home and do what she could, for as long as she could. She was determined never to set foot inside the hospital again. So my father, sister, brothers and I worked together to fulfill her wishes -- and care for her needs.
It's easy to find folks in the same difficult position. According to a 2004 study conducted by MetLife and the National Alliance for Caregiving, more than 34 million Americans provide support to an aging family member -- and about 5 million of them do so from a distance. As the baby boomer generation reaches senior citizenship, that number will soar. When my mother fell ill in Longview, Texas, my wife and I struggled not only to come to terms with her disease but also the distance between her and us (we live two hours west in Dallas). My sister in New York City felt even more isolated and powerless to help.
SHIFTING DEMOGRAPHICS
Our story is hardly unique. Today's families are likely to be scattered, living hundreds of miles away from each other, thanks, in part, to modern modes of transportation and communication. Although leaving home presents a host of opportunities, there are drawbacks. Nowadays, many elderly Americans don't have the safety net of nearby family members. And caring for the elderly or chronically ill is challenging under the best circumstances. Doing so from a distance only creates additional stresses.
IDENTIFYING OBSTACLES
The logistical burden of coordinating someone's care from afar can be incredibly time-consuming -- just think of all the phone calls and visits home. It also can affect work performance. According to the 2004 long-distance caregiving study, almost half of the respondents had to rearrange their work schedules to help their loved ones, and about a third missed days of work.
Long-distance caregivers also face the inconvenience and high price of traveling to and from their parents' home base. They spend an average of $392 per month on travel and other out-of-pocket expenses.
But perhaps the biggest obstacle long-distance caregivers must overcome is the guilt of "not being there." My sister had a hard time with the G-word. As the oldest and only girl in the family, she had a special bond with Mom. Eventually, my sister enlisted her husband to hold down the fort in New York so she could be in Texas during Mom's last few months. They spent their time reconnecting with friends and piecing together the family's genealogy. The running joke in our family was that Mom -- who was a schoolteacher by trade but a genealogist by avocation -- stayed so busy writing about everyone else's family that she'd never get around to finishing our book. With my sister's help, she did, before passing away in the spring of 1996.
PROBLEM SOLVING
Of course, not all long-distance caregivers can drop everything and move. What's important is establishing a nearby support network for your parents -- whether it's composed of relatives or friends and neighbors. They should check in with your folks, and you should check in with them. That way, you can be sure that Mom and Dad are doing well and getting the care they need.
Such teamwork is critical when it comes to caregiving. Despite the fierceness of my mom's disease, she did as well as anyone could expect. This was because she had a strong network of people, not a single individual, looking out for her. And by taking a "divide and conquer" approach to her care, my family made sure we met her needs without overburdening any one person.
Our strategy? My dad gave her emotional support and comfort. From Dallas, my wife and I coordinated her health care. My brothers, who lived near Mom and Dad in Longview, gave us health updates, ran errands and set up visits from the grandkids.
TAKING STOCK
If you're taking care of an aging parent or parents, you'll likely dole out responsibilities differently, depending on their needs and the strengths and size of your caregiving "team." But no matter the circumstances, you'll want to start by assessing Mom or Dad's condition. Directly contact health care providers to find out your parents' current medical status, including any medications they are taking. Size up their financial security, and square away legal matters (wills, health directives, powers of attorney). You'll also want to consider their social concerns. (Do they drive? Should they drive?)
If you are overwhelmed by the prospect of developing a strategy to address your parents' needs, seek professional help. Geriatric care managers (GCMs) -- generally nurses or social workers -- can help coordinate a care plan (for more on GCMs, see below). Another resource worth tapping is the National Clearinghouse for Long-Term Care Information (www.longtermcare.gov). The website, launched by the Department of Health and Human Services, provides information on planning, services and financing options.
THINKING AHEAD
After you've established your plan and sorted out who will do what, you'll need to be flexible about adjusting it. What works today may not work well next year or next month. Do your best to anticipate your parents' needs and address concerns proactively. My dad is still healthy and active -- playing rounds of golf, even cutting hay on the tractor at our ranch. However, knowing that he's almost 80, my family has helped streamline his home décor so there are fewer pieces of furniture to trip over. We also make sure that one of us always knows where he is and what he's doing (kind of like he did with us when we were teenagers!).
When it comes to looking after your parents, you always have to be on the ball. There's no doubt that the balancing act is exhausting. But, ultimately, it's one that your parents will appreciate and you will find rewarding.
Cover and cover story photo illustration by C.J. Burton for USA WEEKEND
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Bridging the Distance
A 7-point plan from "AARP The Magazine"
For expert solutions, USA WEEKEND teams with AARP. To become an AARP member and receive AARP The Magazine, call 888-687-2277 or visit aarp.org.
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If you're one of the 5 million long-distance caregivers in the United States, you know that looking after the not-so-near-but-dear can be overwhelming. These stress-reducing steps will help you -- and your loved ones.
RECOGNIZE YOUR ROLE
Many long-distance caregivers don't even consider themselves caregivers -- and that can meantrouble. Caregiving is not limited to hands-on duties; it also includes tasks that can be done from afar (e.g., scheduling appointments, paying bills). By not recognizing their contributions,long-distance caregivers frequently are ill-prepared for the job. To protect your loved one's best interests, be realistic about your responsibilities and develop a game plan for dealing with them.
CALL IN A PRO
If you don't have family members or friends helping lessen your load, consider contacting a geriatric care manager (GCM). GCMs are nurses, social workers or gerontologists who assess the care your parents are getting and make recommendations on -- and offer help coordinating -- the care they need. GCMs typically charge $300 to $800 for an initialassessment and $80 to $200 per hour forservices after that. To find a GCM, call a local agency on aging or contact the National Association of Professional Geriatric Care Managers (see below).
FORM A NEARBY NETWORK
Ask the people who live near your loved ones to serve as your eyes and ears. Then check in regularly. "Friends and neighbors can help determine when something needs attention, whether it's your dad's driving or your mom's finances," says Elinor Ginzler, AARP's director of livable communities. Ask your folks who they're comfortable with you contacting so they don't feel like you're butting in or threatening their independence.
BE A SYMPATHETIC SIBLING
Workload disparities can lead to conflicts. If a brother or sister is handling the bulk of day-to-day activities, be sensitive to the strain on your sibling, and do what you can to help. Find a grocery store that delivers so your brother doesn't have to, or spend your summer vacation at your parents' place so your sister can take a break. Another way to reduce family disputes: Recognize your differences in personality and take advantage of them. If you're a financial pro, consider tackling the bills. If your sister is the sensitive one, let her handle enrolling Mom and Dad in a driver refresher course.
MAKE THE MOST OF YOUR VISITS
The average long-distance caregiver travels 450 miles one way to reach a parent or loved one. So when you visit, make the trip worthwhile. Be sure to balance duties like shopping and laundry with activities such as watching a movie or paging through a photo album. Quality time is important. Plus, hanging around the house lets you size up the surroundings. Are the dishes piling up? Is the mail unopened? These signs could indicate more care is needed. Another good idea: Plan your visits to coincide with doctors appointments. You'll get to know the physicians and be able to stay on top of health situations.
LET GO OF GUILT
Whether you're near or far, caring for a loved one can cause serious stress. Harvard researchers found that caregivers experienced more than double the rates of depressive symptoms as non-caregivers; in a University of Washington study, less than half were getting satisfactory sleep. "Guilt is huge, especially for long-distance caregivers, who often think, 'I should be there all the time,' " Ginzler says. Instead of worrying what you should be doing, recognize what you've already done --given your loved ones an incredible gift, despite the miles between you.
TALK TO YOUR BOSS
Nearly 70% of long-distance caregivers have jobs, which can mean more time off and less productivity. Some employers have started to take notice, offering elder care programs. Others are open to leave-sharing, flex-time and telecommuting. Contact human resources for solutions. One possible option: the Family and Medical Leave Act, which allows up to 12 weeks of unpaid leave per year to care for ailing immediate family members.
By Melissa Gotthardt, contributing editor to "AARP The Magazine." To become an AARP member and receive AARP The Magazine, call 888-687-2277 or visit aarp.org. AARP The Magazine and AARP are not responsible for the advertising in USA WEEKEND.
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GREAT SITES FOR CAREGIVERS
aarp.org
Find a wealth of information on caregiving, including tipsheets, helpful articles and updates on Medicare.
eldercare.gov
Need help in the region where your parent lives? This site's "Eldercare Locator" can link you with government agencies and community-based organizations throughout the nation.
caregiver.org
This Family Caregiver Alliance site offers advice, strategies and services for family caregivers.
caregiving.org
Visit here for tips and guidebooks, courtesy of theNational Alliance for Caregiving.
caremanager.org
The National Association of Professional Geriatric Care Managers site answers need-to-know questions about theprofession and helps you find a GCM (just enter a zip code).
-- Melissa Gotthardt
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