Caring in Washington County

Coalition provides information, support for those caring for loved ones

Coalition provides information, support for those caring for loved ones

October 16, 2005|By TAMELA BAKER

Millions of Americans find themselves caring for a chronically ill or dying loved one every year.

In many instances, it's a role they never thought about playing.

"All the sudden they find themselves in this role and don't know what to do," said Dawn Johns, chairwoman of Washington County CARES (Coalition for Advanced care planning, Resources, Education and Support of caregivers.

Washington County CARES includes professionals representing a number of local agencies, from service organizations for senior citizens to private health-care facilities to Washington County Hospital. Together, they have compiled a wealth of information and advice for caregivers. Now, they're exploring ways to get the word out.

Last week alone, the group was represented at the "Retirement and Beyond" exhibition on Monday at Valley Mall, and at a White House Conference on Aging forum at Robinwood Medical Center on Tuesday.


CARES members hope through such events to draw attention to situations they contend most of us will experience, but rarely prepare for.

Daunting prospect

Several factors can contribute to confusion and stress when people are thrust into the position of caregiver, and can result in the failure of a chronically or terminally ill loved one having the best care available, said Johns, who is the community relations director for Hospice of Washington County.

At last week's forum, CARES, Hospice and several other participating organizations reported that a lack of communication and coordination can make a tough time even tougher, particularly when a family is faced with a loved one's approaching death.

"End-of-life care needs to be addressed at the point of diagnosis, where advance directives are discussed between the physician, patient and family so that when acute episodes occur, physicians don't disregard the patient's advance directive at the urging of the family to 'do something,'" their report said.

Families, they noted, often are put in the position of coordinating care for a loved one even though they might lack the knowledge or skills for it. And when more than one doctor is involved in the care, sometimes services are duplicated, and patients and their families get conflicting information.

This lack of correct information prevents family members from making informed decisions, their report said, and Johns echoed those sentiments.

"They frequently find themselves in crisis mode," she told The Herald-Mail. "That is not the time to make decisions."

The report also cautioned that a team approach - including health-care professionals, patients and their families - often is overlooked, and that including spiritual advisers (clergy and chaplains) who could help families work through the emotional and spiritual issues frequently is an afterthought.

Further, Johns said, there's not enough conversation among family members about advance directives - a written expression of a person's desire for medical treatment used in cases where the person becomes incapacitated and no longer is capable of making decisions.

That's mainly because Americans just don't like to talk about sickness and death, she said.

"Just because you sit down and have a conversation about it doesn't mean you're gonna die," she said.

A concerted effort

Various community agencies individually have tried to help caregivers cope with their new responsibilities, Johns said.

The Robert Wood Johnson Foundation, a philanthropic organization dedicated to health and health care, had made grants "here and there" to individual groups, Johns said, but began several years ago to seek a more comprehensive approach.

"They decided to fund community organizations that know the needs of the community," Johns said.

With assistance from the foundation, Washington County CARES organized in 2003 "to bring organizations together that were working toward the same goals," she said.

Since then, the coalition has embarked on a number of projects, from conferences to publications, to provide education and support to caregivers - past, present and future.

At their first conference, they surveyed caregivers and "asked how we could best support them," Johns said. The caregivers asked for a newsletter with tips and information, but Johns said coalition members had trouble finding time to do a regular publication. But they did start publishing a "caregivers calendar," funded with monthly sponsorships, that provides monthly tips and advice for caregivers. The calendars are free to caregivers and are available to others for $5 each.

There also is a support group for caregivers. Led by Sheri Evans of Somerford Assisted Living, the group meets at 10 a.m. on the first Thursday of each month.

"It's open to anyone who is, has been or may be a caregiver," Johns said.

CARES also conducts educational workshops on advance directives. Johns would like to see more attention, particularly from public officials and health-care professionals, given to the need for a formal, countywide advanced directive form, and a database that would allow health-care providers immediate access to directives.

The reason?

"I see more and more people who are alone; their children have grown and left," she said. "People are more transient. Someone's gonna make their decisions for them."

CARES also has co-sponsored publication of a health management resource guide. Next year, the coalition hopes to have a Web site up and running.

So far, Johns said, the response has been positive.

"The caregivers are so thankful," she said. "The feedback is encouraging; we're making little differences."

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