Client Education

Care Planning

Help! Needing It and Finding It

By: Denise Hamilton, Special to AccentCare

Caregiving brings out the best and the worst in families. Often, members disagree about financial and medical decisions. There may be resentment that some individuals live too far away or aren't helping enough. To minimize conflicts, experts recommend that families acknowledge these feelings and work through them.

The Alzheimer's Association, for example, suggests organizing a family meeting to discuss caregiving roles, responsibilities, problems and feelings. Depending on the situation, you may want to invite a professional counselor or member of the clergy to mediate.

At these gatherings, families should list all tasks involved in patient care and calculate the time, money and effort required for their completion. The work can then be assigned based on preference, personality and proximity. The key is constant communication via periodic family meetings and conference calls, the association says, to reassess the needs of both patient and caregiver and make any necessary changes.

On another front, the National Family Caregivers Association has developed "10 Tips for Family Caregivers," which includes educating yourself about your loved one? condition, trusting your instincts, watching out for signs of depression and illness, being good to yourself and taking charge of your life so that your loved one? illness or disability doesn? always take center stage.

One of the most overlooked recommendations, experts say, is to seek support and networking help from other caregivers. "There is great strength in knowing you are not alone," says the NFCA, echoing the words of many other advocates. Yet carving out time to do this is difficult for many people.

"People are confused and exhausted by the time they start looking for help, and one of the main challenges is finding the resources that are available," says Bonnie Lawrence, spokeswoman for the Family Caregiver Alliance in San Francisco. "Each family has different needs and there? no national service; it? very scattered. You have to find the central clearinghouse in your area."

Experts recommend that caregivers begin their search by contacting their local Area Agency on Aging. Each county in the United States has one, which provides resources in the agency? community. Depending on the patient? disease or illness, you can also contact a professional association, whether it be the Alzheimer? Association, the American Brain Injury Foundation or the American Stroke Association.

Thirdly, experts urge caregivers to contact their local senior center for referrals and to inquire about adult day care, structured programs at licensed facilities that take care of adults who need help, thereby providing caregivers with a break. Another program is respite care, in which an agency or organization will send a caregiver into your home so you can take needed hours off. Some of these programs offer financial assistance. Caregivers can also call local hospitals and ask for a case manager, who can also make referrals.

Groups such as Today's Caregiver and the Family Caregivers Association also sponsor conferences and retreats to provide caregivers with a break and an opportunity to network. Your local Area Agency on Aging should know if similar programs exist in your area.

There are also a growing number of Internet options. The Family Caregiver Alliance offers a forum in which caregivers can swap information and provide emotional support. Today? Caregiver has a chat room (see addresses below), and so do the organizations associated with individual diseases. "You're got really loving, dedicated people at these places who know what you?e going through," says Gary Barg, chief executive officer of the publisher of Today? Caregiver magazine. "I know people in rural areas who have become tremendous diggers for every support they can find, and that? part of the job. You have to learn how to be your loved one? advocate."

Resources:

Area Agency on Aging: Look in your phone book, usually listed under local or federal government.

Today's Caregiver magazine: (800) 829-2734, or www.caregiver.com.

Family Caregiver Alliance: (415) 434-3388, or www.caregiver.org.

National Family Caregivers Association: www.nfcacares.org.

Southern Caregiver Resource Center: (619) 268-4432 or e-mail scrc@adnc.com. This agency serves Imperial and San Diego counties in Southern California but has published useful brochures on caregiving.

Alzheimer? Association: (800) 272-3900 or www.alz.org. This site, while dedicated to Alzheimer? disease, includes helpful coping strategies and ideas that can be applied to any caretaking situation.

Denise Hamilton is a Los Angeles-based freelance journalist and Fulbright Scholar who writes a health column for the Los Angeles Times.