All in the Family

Family Caregivers Relaxing in the Park

Joanie figured that when her mother, Marion, 82, got sick, the family dynamics 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 years earlier. But they had always kept in touch.

When Marion was diagnosed with a chronic heart condition and diabetes, Joanie jumped in. She cared for her mother’s medical needs and arranged 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 with three young children and a part-time job, she couldn’t believe she would become a caregiver at 46. She had 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 76 percent of family caregivers don’t get consistent help from family members. Spouses get the least help — only 16 percent.

The challenges of caregiving can strain family dynamics. Caregivers can seek support, practice self-care, and communicate openly to navigate this difficult experience. 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. Sibling rivalry and spousal jealousy can limit caregiving support. Open communication and compromise are key to resolving such family conflicts. 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.

One sibling often bears the brunt of parent care, per geriatric care experts. Equitable distribution of responsibilities and mutual understanding can ease this burden. 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. Caregiving involves navigating diverse personal responses to loss, illness, and mortality. Empathy, flexibility, and self-care can help caregivers support loved ones through these challenges.

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 like a geriatric care manager or elder law attorney. Ideally, everyone, including the dependent loved one, comes together to ask, “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.

Naming caregiving as a family process breaks down the barrier of one person carrying the burden alone. This recognition encourages shared responsibility and support among family members.”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.’ “

Improving Family Communication in Caregiving

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 steps become clearer. The sibling who couldn’t provide hands-on care might now help balance Mom’s checkbook.”

“Seattle counselor Wendy advises siblings to focus on achieving communication rather than resolution when trying to come together. Understanding and acknowledging each other’s viewpoints can help smooth out differences and build on each person’s strengths.Family leaders often need to relinquish control over caregiving and accept less than perfect contributions from 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, providing Joanie with 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 evolve beyond their expected roles when given the chance to display new strengths or character traits. It’s crucial to remain open-minded and open-hearted, acknowledging that people can surprise us by stepping up in new ways, even if they haven’t before.

Ultimately, if siblings don’t respond, the primary caregiver must seek support and rest elsewhere, advises MacLeod. “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.

Practical Tips

Caregiving author Claire Berman suggests siblings: communicate openly, divide tasks fairly, and seek outside help to navigate family dynamics.

* 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.