Caregiver stress is a major concern for anyone dealing with a degenerative condition such as ALS (Lou Gehrig’s Disease). With so much attention focused on the patient’s well-being, the needs of the caregiver are often ignored.

In the recently published third edition of Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, a chapter is devoted to family caregivers: why they matter, how their role changes as the disease progresses, their challenges and burdens, and caregiver resources.

Below is a brief excerpt from the chapter dealing with caregiver stress.

Care Partners as Caregivers
Throughout the course of illness, caregivers need to take care of themselves as well as their patient-partner. An emotionally upset, physically exhausted person cannot be very useful to anyone else until they take time to address their own situation. Caregivers need support, encouragement, and appreciation just as patients do. Patients as well as other relatives and friends can recognize and address these needs. In fact, a friendly, appreciative patient can make a big difference in the caregiver’s outlook and adjustment.

Buffers That Protect Against Caregiver Stress and Distress
We have already noted some factors that support and encourage caregivers, including practical help with care, time off, support from the patient and from professionals, and continued contact with family, friends, and neighbors. Other predictors of caregiver well-being include the presence of a strong positive bond between caregiver and patient that predates illness onset, having strong spiritual beliefs or religious ties, having a generally optimistic outlook on life, and the ability to find positive meaning in caregiving.

A significant dimension of caregiver well-being concerns coping style, and the extent to which coping mechanisms match the stressor at hand. Folkman, a leader in this field, defines coping as the thoughts and behaviors that caregivers use to address practical (instrumental) problems related to the patient’s illness (problem-focused coping), manage distress (emotion-focused coping), and maintain positive well-being (meaning-focused coping). Ideally, instrumental kinds of problem-solving coping are used more in situations where something can be done, and emotion-focused coping to regulate distress is used more in situations that have to be accepted.

A questionnaire titled “Ways of Coping” asks about different strategies used in responding to a particular situation. There is almost no research regarding caregiver coping with terminal illness, but studies of caregiver coping in earlier stages of illness show that distancing (e.g. “I went on as if nothing happened”) and escape-avoidant coping (e.g. “I wished the situation would go away”) are associated with increased distress among caregivers. Other kinds of coping that appear to be effective in diminishing distress include positive reappraisal (“ I looked for the silver lining, so to speak”), benefit-finding (“I rediscovered what is important in life”), information-seeking, and problem-solving (“I came up with a couple of different solutions to the problem”).

The ability to redefine goals as circumstances change is often key to maintaining well-being. Thus, a caregiver initially may aim at helping the patient to remain at work, for instance, driving him or her to the office when limb weakness becomes prominent. When the patient no longer can manage at work, the caregiver’s goal may be redirected toward maintaining a busy social life, arranging dinner with friends, and getting theater tickets. When fatigue and loss of mobility preclude such activities, the caregiver may redirect efforts to arranging for friends and family to visit at home. It is important, however, to work collaboratively; if the patient is not r prepared to stop work, for example, the caregiver may be premature in relinquishing this goal.

Another example concerns hope, a critical component of well-being, and indeed of survival. Loss of hope has been associated with thoughts or actions relating to assisted suicide in a study of patients with ALS. It helps if the patient and caregiver share hopes. At the outset, the hope may be that the diagnosis is wrong. Next, the hope may be for stability of symptoms or slow progression, or the development of a cure before the disease becomes incapacitating. Eventually, the hope may be that the patient is comfortable and pain-free, and ultimately, that death is peaceful, where the patient wishes to be, and with the important people present. Instead of seeing each change as a defeat, the redirection of goals can be sustaining for both patient and caregiver. With hope, as one doctor said, all the battles can be won except the last.

As Folkman has noted, coping theory and research have traditionally focused on the regulation of distress. However, recent research suggests that positive mood can coexist with distress and may have important adaptive functions. Coping processes that bolster positive mood are related to the individual’s values, beliefs, and goals. Conversely, positive mood can predispose people to feel that life is meaningful, even in negative situations.

Excerpted with permission from Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, edited by Hiroshi Mitsumoto, MD, and available for purchase from publisher Demos Medical Publishing, which publishes numerous health- and disability-related books on topics such as layperson’s guides to conditions, traveling with a disability, creating independent lifestyles, career and finance guides for people with disabilities, and more.

Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, third edition, edited by Hiroshi Mitsumoto, MD. 2009 by Demos Health, New York. 475 pp. ISBN-13: 978-1-932603-72-9