The Ties That Bind
Nurses serve as a key link between medical staff and family members who care for loved ones from afar

By Pamela Stone
November 14, 2002

As their parents age and become ill or are no longer able to fully care for themselves, children living at a distance are faced with pressing problems. Most can't travel back and forth to provide sufficient help. Many feel guilty-or regretful. Some aren't familiar with the area's social services and have difficulty arranging assistance from a distant location.

Today, nurses are coming to the rescue. But they often are caught in the middle of this stressful situation. Serving as liaison between the aging patient and the medical staff, they deal directly with their patients' families and adult children. They collect facts and information and report back to the families, assuring them of the well-being of their loved ones.

But their task isn't easy.

According to surveys by the National Alliance for Caregiving and the American Association of Retired Persons, more than 22 million Americans juggle jobs and care for the elderly. AARP also reports that the need for long-term care will double in the next 15 years. The number of adult children who live more than one hour away from their parents or relatives also is steadily increasing.

Prue Smith, MS, CS, RN, a parish nurse and care management team member at Luther Manor, a continuing care retirement center in Milwaukee, believes that communication is key to dealing with long-distance caregivers. She points out that any information the families receive is helpful.

"Many of these people are managing their own jobs and families," she said. "They are feeling squeezed, particularly if a transition is happening, like someone moving into a facility or someone receiving emergency care.

"Nurses sometimes forget that they have good information in this area," she said. "They need to share that information to make the process smoother, so the families realize how the system works."

Clare Wohlgemuth, MS, CS, RN, a nurse manager for the Boston University Geriatric Services at Boston Medical Center, agrees. She encourages her nursing staff to be patient with their clients. Many are unfamiliar with the area's social services, and they need guidance.

When dealing with clients' families, she advises them to "do your homework first" by researching on the Internet, checking out local senior services or contacting the area agency on aging, before talking to the nursing staff.

"Once you gather information, you'll feel like you have more control over the situation," Wohlgemuth said.

Emotional whirlwind

But caregiving from a distance poses other problems. According to mental health experts, physical distance often is affected by a whirlwind of emotions.

"Whenever there's a caregiving situation, the family dynamics break down," Wohlgemuth said. She points out that the burden of care often falls to one child. Usually, the child who was always in charge takes over. To ease this transition, Wohlgemuth recommends families create a plan of action, allocating equal responsibilities to all family members.

Paying the bills, maintaining the patient's home and handling insurance payments are some of the demands that relatives often face. If the patient is returning home, someone needs to assist in grocery shopping or medical needs. After families agree on a plan, they should put it in writing to avoid disagreements later, Wohlgemuth said.

At Boston Medical Center, Wohlgemuth works with an at-home team, composed of attending physicians, a geriatric clinical nurse specialist and a licensed social worker. Each specialist shares care for an elderly person receiving medical attention at home.

The geriatric clinical nurse visits the patient at home and does a geriatric assessment. Then, he or she provides care planning and case management for the patient, where contacts or referrals are made to social service agencies to provide meals, order medical equipment or home health care services, like laundry or shopping. The nurse also consults with family members to provide these services if possible.

Wohlgemuth, a geriatric care nurse, has been in practice for 15 years. "When I took this position, I thought the hospital needed to add nurses to their care plan. It's an impossible task for one physician to do."

It takes a village

"Through the efforts of the nursing staff, I feel our elderly patients' care is enhanced," Wohlgemuth said.

What is the secret to her success? "We get everyone involved-the medical staff, the community, the neighbors, plus the patients' family."

Marty Richards, a geriatric private-care manager in Seattle, also consults with long-distance caregivers. She implores family members to think of their own needs, asking them, "What are you doing for yourself?" She then suggests that they keep a phone book and resource guide handy. She reassures them by saying, "Being close means a different kind of caring experience-not bad or good, but different."

When a distant child visits, the patient often puts on his or her best front, Richards said. This often gives the visitor a false sense of security about his or her parent's health. That is why it's necessary to have a local relative or other person with whom to communicate regularly-to get the true picture.

If a parent lives in a facility, a social worker may provide this information. Richards advises families to call at a set time-when that person will not be busy.

Ask questions: "Is Mom participating in activities? What material things does she need?" Say, "The last three times I've called, Dad seemed down. Is something going on with him?"

Smith emphasizes this point, too. Families should be encouraged to be in contact with members outside the medical arena as well. Friends, relatives, church members, a hairdresser or a bridge partner can give an accurate picture of a loved one. She advises family members to give out their phone number, asking community members to contact them if necessary.

In case of an emergency, Smith said that if you're living at a distance, problems are intensified. That's why it's critical for the nursing staff to share health care information.

She advises hospitals or nursing facilities to establish an information system with each family, by asking:

• Who should I talk to in terms of problems?
• When is the best time to call?
• If a problem occurs-medical, legal or financial-how do you want to deal with it?
• How can I get written information if I need it?

Planning ahead

In turn, families can help nursing staff if they are vigilant about their ability to connect and provide useful, timely information.

Experts also counsel families to plan for the care of their parents while they are still healthy. Grace Lebow, co-director of Aging Network Services in Bethesda, Md., said, "Pull the whole family together-including Mom and Dad-and ask, 'What if something happens to Dad-what should Mom do? What if we can't afford care? Who will provide power of attorney? What if Dad can't drive? What are the available social services?' "

Nurses who deal with long-distance caregivers agree that it's difficult to handle the issues of aging, but the burden grows worse with no support network. Often, nurses will recommend a geriatric care manager to help assess and devise a care plan for elders. For an estimated $200 a month, this plan can help families create a strong social network, providing social services in transportation, shopping, medical and financial care.

Caring for the elderly puts a lot of strain on families and medical communities, Lebow said. It is hard to face the losses of aging, she said, but the biggest burden occurs when we don't plan.

Like other experts, she agrees that if families come together and are willing to change roles and make accommodations in their lives, they can become resilient caretakers. "The clearer one can communicate, the better the caregiving experience can be," Wohlgemuth said.

Contact Pamela Stone at pamstone3@aol.com