Hospice of the Comforter

The Chinese symbol for crisis includes the pictograms for both danger and opportunity. A crisis involving illness or changes in a loved one’s ability to care for himself or herself can have many outcomes for a family. Our families are systems involving a group of interdependent and interacting individuals that form a whole.

An image that demonstrates the interconnectedness of family dynamics is a baby mobile. While each item on a mobile circles the central support separately, together, all items form a dynamic system. When items are added or removed, or when individual items have a burden added to them, the shape and balance of the entire mobile is affected. Just so, family members, whether near or far, are affected by a significant change in any other member.

The cultures of our families can also have an impact on how family dynamics are shaped by illness or caregiving needs. These cultural influences affect what roles people are “allowed” to play in their family, rules for how we communicate and interact with each other, relationship and career expectations, attitudes toward sickness and health, and responses to change and crisis. Our family cultures can often provide comfort during stressful and difficult times. Unfortunately, our family cultures can also increase stress because of many “unspoken rules” that influence our behavior. If our family has rules against discussing difficult or unpleasant topics, for example, then facing caregiving or safety issues and tough decisions will be extremely difficult.

We must also take into account that each individual in a family is viewing the situation through their own lenses. Have you ever reminisced about a past event, only to find that your siblings or cousins who were present remember it very differently than you do? All of our experiences are filtered through our own interpretations, beliefs and values. If any of us are too firmly convinced that our perceptions are the only ones that are valid, accurate or true, then often arguments and conflicts become barriers to the problem-solving needed to manage the crisis we are facing. We don’t listen well to each other when this is true, and we miss important information while holding on too tightly to our own viewpoint.

A cooperative approach to illness and caregiving needs allows a family to divide tasks according to the skills, abilities and interests of each member in addressing the challenging situation. There are many “jobs” that may need to be filled when a loved is seriously ill or facing long-term decline and disability. The following is a short list of what jobs family members may need to fill:

• Housework or Home Maintenance Assistant

• Personal Care Assistant

• Cook & Nutritionist

• Transportation Assistant

• Medication Technician

• Medical Researcher

• Medical Manager

• Financial Assistant

• Investment Advisor

• Administrative Assistant

• Legal Assistant

• Advocate

• Emergency Responder

No single person can be expert in all of these areas. It is important that a family lay out on the table what are the current needs due to the crisis or challenging situation, have an open and honest discussion of options and ways to address these needs, and make sure that everyone who has a stake in this situation gets to contribute to the discussion. A great way to achieve this is to hold a formal family meeting, specifically to address the situation brought on by the illness or caregiving requirements.

When planning the family meeting, it is vital that the person needing care be included in the discussion, whenever possible. Unless totally incapacitated, or cognitively compromised, they have a legal and moral right to share in decisions that affect their own lives. There must also be decisions made about who needs to be involved in the meeting. A family might want to consider who is most concerned, who is most affected, and who has resources to offer.

If a family has difficulty communicating openly, or has very conflicting views on how to address the situation, it can be helpful to bring in an objective moderator who can hear all sides and work at finding consensus. The meeting should have an agenda, so that tangential issues don’t sidetrack the main focus. All suggestions and options should be considered and evaluated with an open mind.

This is the time to be creative. If the issues are complicated and multi-layered, it is beat to break them down into manageable components, prioritize and decide the primary issue to be addressed at this particular meeting. This is also the time to discover who will make commitments to fulfill the various tasks. If family members are not very honest with themselves and each other about how much time, talent or money they can reasonably commit, the process will be probably not be ultimately successful.

At the end of the meeting, an agreement should be reached, with tasks assigned and timelines laid out. The family should agree to meet again in a few weeks or months to evaluate how the system is working, and tweak it as necessary.

Although the cooperative decision-making process described may not be completely satisfactory to everyone, it gives a structure for families to use whenever confronting challenges. It may require compromise and sacrifice from many members, but once accepted, it will represent a group commitment binding on all individuals. Aging, disability, illness and dependency will crop up in every family from time-to-time. It behooves us to develop a process of open communication, where all are involved in a creative problem-solving process, which helps navigate the way through a particular family’s dynamics.

Each family member, regardless of age, affects the integrity and wholeness of the family. Healthy family relationships are built on a foundation of fundamental respect and dignity for each member.

From As Families Grow Older, 2006. Winter Park Health Foundation.