Disability and the Family

Having a family member with a medical or psychiatric disability places unusual stresses on the family. Family members who provide care giving more than 36 hours weekly are at increased risk for anxiety, depression, sleeplessness, and back pain. For elderly caregivers with a chronic illness themselves, there is a high mortality rate than for those who are not in a care giving role.

When the disability first occurs, extended family, friends and community members tend to flock to help the family. However, as disabilities become more chronic, people fall away and distance themselves from the family and the person with the disability. The resources of the family become stretched.

Financial stress often arises. Sometimes a two-income family has to cut back to one income either because an earner has to stop work due to the disability or with an elderly parent or a child one earner has to stay home to care for the one with the disability. Sometimes a stay at home mother has to return to work so her disabled husband can stay home. The changes in finances also change the roles taken in the family.

When a child becomes disabled or is born with a disability, if there are other children, they often receive less attention. Sometimes this can lead to behavioral or emotional problems in the child without the disability.

Strain on the marriage is common among parents of a child with a disability. Often the mother becomes very involved with the child and pays less attention to the husband and the marriage. As mentioned above, finances can be strained which is a source for common arguments.

Often it is difficult to admit one is angry with a family member for having a disability and its impact on the family. Acknowledging the possible or inevitable future losses is important but it is also important to not overemphasize the loss. A shift needs to be made toward strengths, interests, and abilities. One needs to find meaning and hope beyond the physical progression of the disease. Challenges can be viewed as opportunities for learning and change. Furthermore one needs to be flexible and adjust future major goals.

Community support and psychotherapy can help. Support groups sometimes exist for families with certain disabilities, although more are needed. Respite services are available for families in some cases. Psychotherapy focusing on stress management and support can provide both an outlet for frustrations but also can improve coping.

References:

1. John S. Rolland, M.D. "Mastering Family Challenges with Illness & Disability: An Integrative Model" 3rd Annual Ortho Summer Symposium, 2008.
2. Froma Walsh, Ph.D. "Spiritual Wellsprings for Resilience: Living and Loving Fully with Disabilities." 3rd Annual Ortho Summer Symposium, 2008.

Virginia Fowkes Clark, Ph.D.