Caregiving by committee

By Ken Helander

As Alaskans, we live up close and personal with our unique neighbors, the moose. They are huge animals and look rather awkward, even though they can move effortlessly through dense woods and deep snow. Nevertheless, they are a comical assemblage of body parts that don’t all seem to go together. The running joke is that a moose is a horse designed by a committee. This helps to illustrate something that can happen to families who become responsible for an elder.

Parenthood is well established within our society with clearly defined roles, expectations, and authority. There are plenty of role models, self-help books, Dr. Spock, and generations of precedent that make it pretty clear what a mom or dad is supposed to do as they raise their children. There are even laws that exist to either support or penalize parents for their parental practices. There is fairly wide agreement about the differences between a mother and a father, though their roles undergo continuous redefinition, even within families.

You could say parents are the horse while caregiving families are the moose.

The role reversals of parent-to-child and child-to-parent relationships present awkward scenarios of decision-making by committee. When all the children and the elder agree, the committee can be efficient and things get done with a minimum of stress and strain. Ideally, the person receiving the care is the committee chairperson. When that’s not possible, there is a defined leader or identified decision-maker who represents the elder’s interests and carries out his or her wishes with the support of the other siblings. When there is no designated leader or there are differences of opinion, however, that moose is going to stumble and get its antlers tangled in the branches. No one wants to get close to an angry moose.

Caregiving families can often become a committee without clear roles, or with competing interests. Sometimes the committee roles are driven by negative experiences that happened decades ago, in childhood, and have either festered below the surface or gotten worse over time. Occasionally, family members may not even be on speaking terms with one another. And now, here they are thrown together as a committee to help take care of mom or dad as they grow older and become more dependent.

For some, it may be their last chance to earn their parent’s favor and approval after years of feeling they could never measure up. For others, it might be the chance to get even with that sibling that always got their own way or seemed to be the unworthy favorite. Sometimes it just comes down to differences in the way family members believe and think.

           “Mom should be allowed to die with dignity, without tubes and heroic measures to keep her alive.”  

                           “No! Life is sacred and we should do everything possible to preserve it.”

         Or, how about, “Dad is not safe living alone and he should be in a facility where he can be well cared for.”  

                          “No! I would never let Dad go to a nursing home. I promised him I’d take care of him myself.”

These are common themes in eldercare. A family committee that doesn’t communicate and plan well is bound to face even more stress and frustration than is already a typical part of the caregiving experience. Sometimes families work through these issues on their own to their credit. But sometimes they get stuck in their positions through lack of understanding or feeling overwhelmed, and they lose track of the committee’s purpose - to make sure mom or dad get the care they need. In the end, each family member wants to be able to look back and know they did the best they could and to be at peace with their efforts.

This is the point at which professional consultants in the family committee can be of significant help. The assistance of an experienced care coordinator can provide the guidance and support the family members need to make informed and wise decisions that preserve dignity, independence, financial resources, and family harmony. The care coordinator may recommend additional kinds of help that can be added to support the family, enhance the quality of life of the person needing care, and provide the guidance required to meet everyone’s needs. New committee members might include a financial advisor, in-home care providers, health care workers, or even friends and neighbors. Being flexible and adding resources as needs change can help that caregiving-by-committee to resemble a horse instead of a moose.

Alaska has many resources to provide support to families. It just takes knowing where to find them. AARP can direct family caregivers to individuals or organizations that can help make your committee run like a racehorse.

For information, tools and tips for caregivers, visit AARP's Caregiving Resource Center at www.aarp.org/caregivers or find support by calling the AARP Caregiving Support line at 1-877-333-5885.

Ken Helander is the Director of Advocacy for AARP Alaska. He can be reached at khelander@aarp.org or 907-762-3314.