Joanie figured that when her mother, Marion, 82, got sick, the family would pull together. The youngest of four children, she lived the closest; her two brothers lived in the same state but her older sister had moved from Pennsylvania to California many years earlier. But they had always kept in touch.
When Marion was diagnosed with a chronic heart condition and diabetes, Joanie jumped in. She took care of her mother's medical needs and arranged for temporary home care during rehabilitation after a 10-day hospital stay. But when she called her siblings, it was as if she suddenly were an only child.
"I couldn't believe it -- they said stuff like, 'Well, you were always the favorite one,' or 'You live closer,' or even, 'There's nothing wrong with Mom, leave her alone,' " Joanie recalls. Married and with three young children of her own, plus a part-time job, she couldn't believe she would become a caregiver at 46 and have to deal with the potency and influence of family dynamics she assumed were long past.
Joanie's problem is not uncommon: A National Family Caregivers Association survey found that 76 percent of family caregivers say they don't receive consistent help from other family members. Spouses get the least help -- only 16 percent.
Why this situation happens, and what caregivers can do about it, is a struggle that can seep into even the closest of families. Licensed clinical social worker Beth MacLeod observes there are many reasons why siblings don't get involved.
Personality and role
"Foremost are personality and the child's role in the family," MacLeod says. "Some people can continue to take on and give, and that's been their role in the family. Others have different identities and styles and personalities, and they can't do it. There also may be a sibling with a spouse who's extremely jealous or ungenerous and who restricts the availability of the sibling. Some can handle difficult emotions, and others just can't."
MacLeod finds that sibling dynamics are similar whether the care receiver is an aging parent, a spouse or a child. For example, if a woman is taking care of her spouse -- the father -- some of the children may face it and some won't because they may be holding on to an image that Dad's still head of the family, a tough guy. Along with denial of changes is the fear of disability and of dependency in a loved one.
According to the National Association of Geriatric Care Managers in Tucson, Ariz., in 99.9 percent of cases, there is one sibling who takes on most of the responsibility for parent care. This can range from being the prime decision maker to major hands-on caregiver. There are also issues of geographic distance, work/family situations, finances and marital status. Whether the care receiver is an aging parent, an ill spouse or a frail child, each person handles loss, grief, illness and even death in individual ways.
The Family Meeting
Because dynamics are unique, experts recommend holding a family meeting early on. These can take place in person or though telephone conferencing, e-mail or even a private chat room on the Internet. In some cases, it may be wise to bring in an objective third-party counselor such as a geriatric care manager, an elder law attorney, a social worker, clergy person or a financial planner. In an ideal world, everybody comes to the table, including the dependent loved one, to say, "What are we as a family going to be able to do?"
Experts say the earlier this meeting can take place, the sooner family members can identify what their individual contributions might be. "If this is done with a professional facilitator such as a geriatric care manager or social worker," says MacLeod, "he or she can help dispel what may be lack of information about the illness; oftentimes a total lack of information about the long-term care system and what options there are; and certainly what will already be the ever-mounting emotional responses to this illness.
"The sooner you can name this process of caregiving as a family, the sooner you can break down that barrier of somebody's having to carry the bulk of the burden alone. And don't hold off 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 the dentist at 3 p.m. Thursday because I have child care' -- rather than a general statement such as, 'I wish you'd help more with Mom.' "
Another suggestion for getting family members on board is opening channels for sharing information. If one sibling has gone to a meeting and gathered some pertinent information, for instance, then he can mail or e-mail copies of the information to his siblings. "Be sure you don't exacerbate the non-involvement situation by charging ahead and doing all the work and not spreading the word," says MacLeod. "What you need is information about the illness(es) and information about the services and options available. Then the next step becomes clearer, and perhaps the sibling who couldn't do hands-on care now can get involved balancing Mom's checkbook."
Seattle mental health counselor Wendy says that "Achieving communication, rather than resolution, may be the most productive goal for siblings trying to join together. Understanding and acknowledging each other's point of view may go a long way toward smoothing out differences and building on strengths each person brings to the situation. And family leaders often have to learn how to give up control over the care situation and to accept a less than perfect job from the others in the family."
Rewards of Caregiving
Today two of Joanie's three siblings are involved; together they have arranged for home care, Meals on Wheels and alternate weekends to visit their Mother and give Joanie a break. Although she is still the hands-on caregiver, Joanie is in constant communication with her siblings and feels emotionally supported. The fourth sibling, they all hope, will come around one day, but they understand and forgive his inability to cope with his mother's illness.
"We never realized the baggage we were carrying around," Joanie laughs. "But now, if one of our spouses or children should get sick, we know we are a closer family and will be there for each other. Mom's illness has brought us together in a way we never dreamed, and we are finally grateful for it."
"Many clients tell me that over time, there are rewards for siblings as well as the loved one in caregiving," says MacLeod. "Adult children can heal old wounds and step out of boxes they've been put into when allowed to show new strengths or character traits. It's important to always hold open the mind and the heart to the fact that even if someone has never done anything, they may come forth, and in a new way. So as much as possible, maintain an open invitation."
Ultimately, if there's no response from siblings, it's critical for the one who's engaged as the primary caregiver to get all the support and rest she can from anywhere else, MacLeod urges. "Use caregiver support groups, respite programs, build family in new ways. Identify and involve friends and neighbors who are part of the family fabric who may not be blood kin. Build it where you feel it will see the light." A good resource for building a strong network of organized volunteer helpers is the book: Share the Care by Cappy Caposella and Sheila Warnock. Many people around the country have set up Share the Care groups to help family caregivers and primary caregivers are reaping the benefit.
Author Claire Berman, in "Caring for Yourself While Caring for Your Aging Parents" (Henry Holt, 1996), suggests these tips for working with siblings:
* Clarify the focus of your caregiving efforts, and ask for specific help when necessary.
* Try to find other ways to manage your tasks but don't walk around with resentment. Learn to function without sibling help if necessary.
* Be clear about what you can and cannot do as a caregiver. Let your siblings know what you're prepared to do and accept their points of view and their assessment of how involved they can be.
* Be open and honest. Communicate your feelings but be flexible enough for compromise.
* Be forgiving.