Caregiving and Siblings
Poor Meg Ryan. She's ministering to her ailing father's every need while running a family and a business. Her older sister, a celebrity, is far too busy to help out, although she manages to lecture Meg by cell phone from her empire at a vapid women's magazine. The youngest sister also watches from the sidelines: She's obsessed with perfecting the soap opera character she plays on TV. Naturally their father, an irascible old guy, has only praise for the absent daughters and plenty of criticism for the one taking care of him. Eventually Meg falls apart; the negligent sisters mend their ways, and hugs are distributed all around as Dad breathes his last.
It's only a movie -- the film "Hanging Up" -- and if it sounds like a silly romp through one of the most emotionally wrenching experiences on Earth, it is. But for all its banality, the film flags a troubling issue: It is often one sibling, and one alone, who takes on the lion's share of caring for an older parent.
A 2006 study from the Urban Institute found that only 14 percent of frail older adults received paid home care. And a National Family Caregivers Association survey found that 76 percent of family caregivers say they don't receive help from other family members. In most cases, the family caregiver is a woman who is middle-aged or older. In almost all cases, the caregiver is the sibling who takes on most of the responsibility for parent care, from prime decision making to hands-on tasks. Geographic distance, family history, work and family obligations, and tight finances can all lead to one sibling bearing the brunt of caregiving.
Licensed clinical social worker Beth MacLeod of San Francisco (no relation to this story's author) says family dynamics often dictate the involvement of adult children in parent care. "Foremost are personality and the child's role in the family. For some people, taking on and giving has always been their role. Some can handle difficult emotions and others just can't. There also may be a sibling with a spouse who's jealous or ungenerous and who restricts the availability of the sibling," she says. The sibling living closest may also make most of the decisions, which can be a problem if you live far away and don't agree with the philosophy and style of the local caregivers. The person who controls the money may also wield undue influence.
Parent care, it seems, can bring out the best and worst in sibling relationships: Old rivalries can flare up, old wounds can be reopened. Yet caregiving can also strengthen bonds and provide ample opportunity to nourish your relationships as adults with a common, important purpose.
The family meeting
Because the primary caregiver isn't always the sibling who lives closest to the parent who needs care, experts recommend holding a family meeting -- in person, by e-mail, in private Web chat rooms, or through telephone conferencing.
In the meeting, try to clarify goals and responsibilities, air feelings (without attacking others), and ask for support. If it's your sibling who is the primary caregiver, offer support and ask how you can help. Though it helps to meet with just your siblings, at least initially, involve your parent as soon as possible in all decision-making. If tensions are running high, it may be best to bring in an objective third party, such as a counselor, certified financial planner, or private geriatric care manager.
Experts say the earlier this meeting can take place, the sooner family members can identify their goals and tasks. "If this is done with a professional facilitator," says MacLeod, "he or she can help dispel what may be a lack of information about both the illness and the long-term care system, and what options are available in the community.
"The sooner you can make this process of caregiving a family decision, the sooner you can break down that barrier of somebody's having to carry the bulk of the burden alone," she says. "Don't hold off having a meeting because one person won't get involved; go ahead and do what you can as soon as you can. Then be specific in your requests -- like 'I need you to take Mom to her doctor at 3 p.m. Thursday because I have to work' -- rather than a general statement such as, 'I wish you'd help out more.'" Other therapists recommend asking long-distance brothers and sisters for respite care -- if you need more time for your own family, perhaps they can pay for your parent to fly to their homes for an extended vacation.
In the book How to Care for Your Aging Parents, author Virginia Morris offers these guidelines for holding family meetings:
- Agree to rules in advance, such as not allowing anybody to dominate the meeting. Agree on a time limit for each person's input, and -- hard as it may be -- listen without interrupting.
- Avoid accusations and blaming.
- Keep the discussion focused on parent care rather than on sibling issues.
- Let everyone's views be aired. If there are questions, ask that the statement be repeated or rephrased.
- Discuss the parent's diagnosis and prognosis, what the major concerns are (both now and in the future), and decide what needs to be done.
- Make a detailed list of all tasks, such as paying bills, researching resources in the community, interviewing home health aides, touring senior day care or assisted living facilities, talking with financial and legal professionals, and organizing important documents.
- Appoint one sibling to serve as the family's voice when talking with health care professionals. This person may or may not also be the primary caregiver.
- Divide the duties. Start by letting siblings volunteer. Even those who live far away can handle bills, make phone calls, or do some paperwork.
If caregiving is causing you financial as well as emotional hardships, ask your siblings for help. Many will contribute if they are able to.
"Few families are so cooperative that there is no discord, or so chaotic that older relatives get ignored or abused," write aging specialists Donna Cohen and Carl Eisdorfer in Caring for Your Aging Parents. Some families may appear to be too contentious and bitter to cooperate, they add, but that same family may rally together during a life-threatening crisis.
Ultimately, experts say, if siblings still fail to get involved, reach out to the larger community. It's important for the primary caregiver to build up support networks beyond family -- whether at work, in community support groups or on-line chats and forums. And don't give up hope that your siblings will come around.
"Many clients tell me that, over time, they've discovered many rewards in caring for aging parents," says social worker MacLeod. "Adult children can heal old wounds and show new strengths as individuals. It's important to hold the mind and the heart open to change. As much as possible, maintain an open invitation."
Family Caregiver Alliance: National Center on Caregiving.
The Family Caregiver Alliance was created to support families nationwide who are struggling to care for loved ones with chronic, disabling conditions. Its site includes everything from caregiving advice and resources, fact sheets in English and Spanish, newsletters, and public policy and research briefs. To learn more, go to the Family Caregiver Alliances Web site at http://www.caregiver.org.
Donna Cohen and Carl Eisdorfer, Caring for Your Aging Parents: A Planning and Action Guide. New York: Jeremy P. Tarcher/Putnam.
Virginia Morris, How to Care for Aging Parents: A Complete Guide. New York: Workman Publishing
Donna Cohen and Carl Eisdorfer, Caring for Your Aging Parents: A Planning and Action Guide. New York: Jeremy P. Tarcher/Putnam..
Virginia Morris, How to Care for Aging Parents: A Complete Guide. New York: Workman Publishing.
Urban Institute. Few Frail Older Americans Receive Paid Help; Families Forced to Pick Up Slack. http://www.urban.org/publications/900933.html