BEING A CAREPARTNER
The Only One: In certain cases, only one person in the family is responsible for the care of the patient. Yet, at some point, every caregiver will need assistance with the patient’ s day-to-day care, not to mention back-up plans for emergency situations. The enormity of being the Only One clearly dictates the need for additional support. Over time, the Only One may become socially isolated and may compromise their own physical and mental health in favor of the patient’ s well-being. It is important for other family members, friends, clergy, and community members to reach out to the Only One in an effort to help them to develop a support network.
Characteristics of Strong Families
Many factors contribute to and characterize family strength. The first is a feeling of safety and trust within a family. Strong families exhibit a respect for, and an encouragement of, sharing thoughts and feelings with each other, even in the face of disagreement, conflict, and intense emotions. Greater closeness and strength ensue when family members behave respectfully, listen openly to one another, and try to understand different points of view.
Family history and tradition can also foster family strength and a sense of togetherness. If families can maintain their customs and observances, even during illness, they have a better chance of staying close, keeping their family traditions alive, and building more memories.
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Another characteristic of a strong family is the willingness of individuals to help one another and to share responsibilities. Most likely, each family member, whether near or far, has a special ability or talent that they can offer. For example, one individual may be more adept with financial records and bookkeeping. Another family member may enjoy shopping or running errands. Another may accompany the patient to doctor or therapy appointments. There are plenty of tasks to be distributed and shared.
Resilience is another component of strong and healthy families.“ Resilience” comes from the Latin root meaning“ leap back from” or rebound. Resilience is the capacity not only to withstand hardship but also to spring forward from it, often with a newfound sense of courage, determination, and inner resources. Resilient people can adapt to change, find new and creative solutions to complex problems, and accept what has become the“ new normal.” As the diseases of PSP, CBD, and MSA change and worsen over time, the“ new normal” also changes. Families are called upon to be flexible, cooperative, tolerant, accommodating, and willing to compromise. No one can be this way all of the time. Yet, even while feeling conflicted or overwhelmed, strong families strive for this ideal of resilience and flexibility.
Open boundaries: Strong families let others in. People are not afraid or ashamed to ask for help, whether physical or emotional, in a healthy family. Open-boundary families welcome outside support and viewpoints.
Practical Pointers for Building a Strong( er) Family
Although the person with the diagnosis is usually the family’ s central concern, family members also need to focus on themselves and how they can best work together. To that end, here are some pointers.
Realize that there are stages of adapting to living with chronic illness. Be patient with yourselves and the process. The stages are: 1. Disbelief, or rejection of the diagnosis 2. Recognition: The reality is hitting. Now what? 3. Reorganization: Bringing others into the circle of people who know and may be able to provide support 4. Resolution: The disease is real. What does it, or what will it, require? How will we build our network of support and find resilience and hope?