Dr. Val Farmer
Rural Mental Health & Family Relationships

How Does A Family Cope With Incapacitating Illness

November 2, 1998

No child, adult or family should have to deal with the ravages of illness or disability. We can agree on this. Unfortunately, life doesn't always cooperate. When severe illness or debilitating injury occurs, it seems like a nightmare.

The challenges facing caregivers. Family members face enormous changes, both physical and psychological. On the physical side, a family member takes on the role of caregiver. They provide all the medical assistance they can plus assist with daily living. This can be a 24 hours a day, seven days a week job.

The scope of the caregiver's work in the home is magnified. Caregivers can be overwhelmed with physical and emotional exhaustion trying to keep up with demands of providing the care required.

Psychological changes. The behavioral and personality problems are more stressful to family members than the actual physical symptoms. This is especially true when Alzheimer’s disease or traumatic brain injury has affected the personality or the thinking ability of their loved one. For example, a spouse loses the emotional support of a best friend and ally when their partner loses important relational skills.

Instead of feeling like she has a husband, a wife may feel like she has to "mother" her mate. She suffers the profound loss of a companion precisely at the time when she may need support the most. The relationship becomes one-sided because she experiences the lack of sensitivity to her needs.

Social isolation. The disabled person may be impulsive and lack judgment, creating irritation and worry. They can become dependent and demanding. Family gatherings may be unpleasant. There may be social embarrassment in public. Friends pull away and don't come to visit. Family members may feel emotional abandonment on a variety of fronts.

The amount of change is overwhelming. Depression is common among caregivers. Health problems can occur under this type of unrelenting stress.

All family members have to cope. There are similar challenges for a parent or a sibling when their loved one is disabled. A parent deals with dashed hopes and dreams. They are confronted with lifelong care and the loss of freedom. They may quarrel about who does what. Their way of grieving and coping with the loss may be out of synch with their spouse. They feel trapped physically and financially by the new circumstances.

The impairment causes a loss of parental attention and increased responsibility for a minor child or a sibling. It changes the family and makes the family different. The disabled parent may take out some of their frustration and anger on the child. The child loses the relationship they once had with their parent.

Coping ideas. I talked with Psychologists Michael J. Salamon of Hewlett, NY and M. Powell Lawton, Director of the Polisher Research Institute of the Philadelphia Geriatric Center. Here are some of their ideas that may be helpful to caregivers.

Lawton stress that "caregiver burden" - not equivalent with depression - is present in 100 percent of the cases. He helps people look for the satisfactions they get from caregiving. Recognizing the positive aspects of caregiving helps balance out the huge stress load and sacrifices the caregiver makes. A source of satisfaction is often rooted in a sense of living up to a valued principle, such as fulfilling an obligation to care for an elderly parent.

Lawton also coaches caregivers on looking for small uplifts that occur during caregiving. Such things as linking the smile on the face of the disabled family member to the caregiver's efforts. Taking pleasure in small things means a lot.

He also helps caregivers recognize that helping an impaired family member stay with their former interests has value. Someone who used to read a lot can still turn pages of a magazine. Activities like listening to music or looking at family photographs are enjoyable even though their memory has faded.

He recommends that caregivers take advantage of respite care and day programs. Even if someone comes to the home, this frees up the caregiver to clean and do some projects around the home without interruption.

Lawton feels support groups aren't for everyone. Even sporadic attendance is helpful. A support group is the perfect vehicle for caregivers to express anger and talk about daily frustrations in front of an understanding group.

One day off essential. Salamon believes that caregivers should be relieved at least one day a week to pursue their own lives, be with their friends and have an emotional outlet from the constant demands of care. He says most people can find helpful community resources to give them that one day of relief.

He recommends that caregivers accept as adequate the level of care provide by day care programs and other caregivers in the home. Some loved ones may actually do better in a full time nursing facility with the special memory and occupational programs offered there.

Salamon also feels support groups are valuable but not for everyone. Some caregivers do better with individual counseling. His number one message for caregivers is to take care of yourself.

He helps caregivers realize that they volunteered for this role and that the self-selection process started long before the need occurred. Once they accept this role as one they chose, they then find it easier to ask for help from siblings in a positive and constructive way. And they usually get it!