Caregivers are supported and empowered by information: about the illness, about the individual who has the illness, and about available resources that can help.
Among the Seven Corporal Works of Mercy is visiting and tending the sick. We look after each other, providing comfort, concern, and care in times of need. Loving and caring for someone with bipolar disorder can be tough at times. The quest for smooth sailing is ongoing, and often a storm can hit out of nowhere … But know that the boat is stocked with life jackets!
What is “sickness behavior”?
“Sickness behavior” refers to behavioral patterns that are attributable to the underlying illness. For example, the flu and other systemic infections cause recognizable behaviors of lethargy. Episodes of bipolar disorder can generate behaviors that are distressing and often embarrassing to the person and to those around them.
Sickness behavior is related to the “sick role,” a complex, socially approved status that relieves the ill person of their daily duties. It provides for time off work and limited expectations for daily obligations. The challenge is how to negotiate these behaviors and roles when someone has an illness that is ever changing, with some days that are better than others.
Not every “bad” day forebodes an emergency. But patterns do evolve, and an understanding of these patterns can be helpful for planning purposes.
As a caregiver, how can I maintain focus and avoid burnout?
The management of bipolar disorder is a collaboration that involves the individual with the illness, the family caregivers, and health-care providers. Each has a major role to fulfill. Understanding and acceptance of the respective roles are important, and this includes the knowledge that one’s functional role may vary within relatively short periods of time. This can be challenging, particularly when one spouse is the primary caregiver for the other.
Caregivers are supported and empowered by information: about the illness, about the individual who has the illness, and about available resources that can help. It is important to stay in close contact with your loved one’s health-care team; providers have advice, suggestions, and resources they are happy to share with caregivers. American psychologist and international authority on bipolar disorder Kay Redfield Jamison’s best-selling classic An Unquiet Mind: A Memoir of Moods and Madness, for example, is a must-read for anyone wanting to learn more about bipolar.
Burnout, an increasingly recognized complication of caregivers for any chronic health condition, is a personal sense of exhaustion and feeling overwhelmed to the point of worrying that one cannot meet demands, resulting in loss of interest and energy in the role. It is important for caregivers to themselves have a support system: a therapist or network of people who are familiar with the stressors and can help. Family therapy is often a great idea and can help prevent caregiver burnout. A good family therapist focuses on the family as a unit, with the aim of strengthening the family in the context of ongoing stressors.
How can I help? When should I step in?
Is an interaction pattern related to the illness and an underlying episode, or to a conflict in the context of the personal relationship, or something else? Getting to the bottom of things can be convoluted.
During a period of wellness, ask your loved one to describe the depression and manic patterns they experience, including how they recognize that “rough waters” may lie ahead. Ask how you can know, or what signs you can look for, if they need you to step in. Determine if you should have a medical power of attorney or other legal mechanism in place in case an emergency arises.
Providing care can be a rewarding experience. People with bipolar are often amazingly creative, energetic, and engaging, and the world is truly a better place because of them. But the diagnosis does come with unique challenges, which is why affected individuals need the considered and special attention of family caregivers and health-care providers.
Printed as “Ask the Doctor: Blessed are the Caregivers,” Winter 2020
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