For Karlyn Rosen Aires, 48, of Elkins Park, Pa., offering to help care for a friend with ALS was never in question. What worried her was how much time she could devote to her friend's care given her responsibilities to her own two children, not to mention her busy home-based business.
Then there were tasks she simply couldn't take on: When her friend's balance turned erratic, for example, she realized that she could no longer drive her to doctor's appointments, fearful that she might fall.
"When you're a caregiving friend sometimes you can feel like you're drowning," says Susan Brace, a clinical psychologist who specializes in caregiving issues. "But you're simply in a deep swimming hole where you haven't been before. You have to get the feel of it."
Hal Chapel, cofounder of LotsaHelpingHands, a website and mobile app that builds communities to reduce caregiver stress, finds that caregiving friends often fall into three categories: those who try to do everything, those who are put off by a certain diagnosis and those who want to help but don't know what to do.
Barry J. Jacobs, PsyD., a member of the AARP Caregiving Advisory Panel, agrees. "Some people step up and go beyond, while others retreat. Some people say they didn't know who their true friends were until they got sick."
Caregiving for a buddy also may lead to issues of intimacy, privacy and independence — all of which can test the boundaries of a friendship.
When it comes to these emotional topics, Jacobs recommends having an honest conversation with your friend about what feels acceptable and comfortable to both of you. "Let your friend know what you are and are not prepared to do," he says.
Some people, for example, may be loath to give a companion a sponge bath, while others may feel more comfortable with personal care. Brace offers a practical approach.
"Think about if the roles were reversed," she says. "Would you like your friend to help you in such a situation?"
Rosen Aires finally settled on playing Scrabble with her ALS-afflicted friend once a week and bringing weekly meals. "I was good at doing concrete things," she says.
To help those who want to help, experts suggest developing a plan of care. Friends can get together with their sick pal, determine what tasks need to be done and then delegate those jobs based on people's capabilities and schedules. For instance, perhaps one person can drive the friend to the doctor's office twice a week, and others can supply meals, do laundry, clean the house or cut the lawn.
A number of free Internet sites and mobile apps offer help in organizing, scheduling and supporting those who want to assist in caregiving. Some of the largest include:
Mobile app: CaringBridge
This Minnesota nonprofit provides a calendar to schedule volunteer services, as well as space for personal journals that can be shared — or not — with others. The site emphasizes the power of connecting people as they move through their "struggles, small victories and gratitude." Nearly all funding for the free site comes from donations by people who use the service. The site is simple to set up and navigate.
Mobile app: Lotsa Helping Hands
The motto of this service is "Create community," and that's exactly what it does. The site helps users develop a community of volunteers who want to contribute meals, rides or other services. An online calendar provides a color-coded system that alerts participants when help is needed, when needs have been met or when a special occasion is scheduled. Once the account is established, it's a snap to add new helping communities — such as a church, synagogue or school groups — to the contact list. Patients and site coordinators can post updates to a blog and e-mail requests or messages easily.
Mobile app: CareZone
CEO Jonathan Schwartz says CareZone reflects "what it would look like to care for someone online." The site and app allow family and friends to store everything from drug prescriptions, dosages and medication schedules to hospital reports, garage codes and passwords for online accounts in a single secure space. Keeping this information on one site helps reduce repetition of activities or the chance of missing an important appointment.
This website, on which patients or caregivers can post a status update and keep a personal journal, stresses support and inspiration. The site includes a number of articles on diseases and uplifting medical stories. Privately labeled CarePages websites are also offered by more than 625 U.S. and Canadian health care facilities.
Little ways to be a big help when a friend is in the hospital
- If family members are spending most of their days (and nights) at the hospital, get a Visa or MasterCard (or other) gift card for them to use in the cafeteria. Or offer to bring them a favorite take-out meal.
- Offer a hand or foot rub to your friend in the hospital bed.
- Drive by the house to see if the lawn needs to be mowed, trimmed or raked, or if the walk needs to be shoveled.
- Offer to fill up the car with gas — and run it through a car wash.
- Pick up the newspaper from the yard or walk so it's not obvious that no one is home.
- Roll out the trash barrels on collection day and put them back that night or the next day.
- Instead of sending a fruit basket, prepare two or three small containers of cut-up fruit, which won't go bad quickly.
- If you bring flowers, don't put them in a vase or container that needs to be returned. (Ditto with food containers.)
- Make and drop off a meal that can be frozen if not eaten.
- When you visit, don't make the whole conversation about the ill person. Unless your buddy clearly isn't into it, talk about the kind of stuff you'd normally chat about. It's nice to have a diversion.
- Resist the urge to talk about someone else's surgery horror story, allergic reaction, heart attack, tumor or medical mishap.
- If your friend has posthospital doctor's appointments and can't drive because of surgery or medications, offer to serve as driver. Be specific about when you're available, but be sure it's a several-hour block of time.
Ilene Raymond Rush is a freelance health writer.
Sylvia Smith, AARP executive editor, contributed hospital tips.
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