The Caregiver’s Quality of Life
Key Points for This Section
Family caregivers usually begin caregiving without training and are expected to meet many demands without much help. A caregiver often neglects his or her own quality of life by putting the patient's needs first. Today, many health care providers watch for signs of caregiver distress during the course of the patient's cancer treatment. When caregiver strain affects the quality of caregiving, the patient's well-being is also affected. Helping the caregiver also helps the patient.
Psychological distress is the most common effect of caregiving on the caregiver's quality of life. Caring for a cancer patient is a difficult and stressful job. Caregiver distress comes from the practical demands of the caregiver role as well the emotional ones, such as seeing the patient suffer. Family members seeing a loved one with cancer may feel as much or more distress than the patient does. Distress is usually worse when the cancer is advanced and the patient is no longer being treated to cure the cancer.
Caregivers who have health problems of their own or demands from other parts of their lives may enter the caregiving role already overwhelmed. For an older adult caregiver, problems that are a part of aging may make caregiving harder to handle.
The caregiver's ability to cope with distress may be affected by his or her personality type. Someone who is usually hopeful and positive may cope better with problems of caregiving.
Cancer patients often need a lot of physical help during their illness. This is physically demanding for the caregiver, who may need to help the patient with many activities during the day such as:
- Use the toilet.
- Change position in bed.
- Move from one place to another, such as from bed to toilet.
- Use medical equipment.
The amount of physical help a patient needs depends on the following:
- Whether the patient can do normal activities of daily living, like dressing and walking.
- The amount of fatigue the patient has.
- The stage of the cancer.
- The symptoms and how bad they are.
- Side effects of the cancer and the cancer treatments.
As caregivers try to meet the physical demands of caregiving, they may not get enough rest and may not take care of their own health. Healthy habits such as exercise, a healthy diet, and regular medical checkups may be pushed to the side. Health problems the caregiver already has may become worse, or they may have new health problems.
Caregivers often have less time to spend with friends and in the community as their days are filled with caring for the cancer patient. If there are problems in the relationship between the caregiver and the patient, the caregiver may feel even more alone.
In the beginning, there may be a lot of support from friends. The caregiver may be able to continue working and keep up work relationships. When cancer care continues for a long time, the caregiver may need to stop working and friends may call or visit less often. As caregivers struggle to meet the ongoing demands of caregiving, they may want more help from family and friends. Caregivers can find support in other places, such as caregiver groups and cancer organizations, where they can talk with other families. Some caregivers find it helpful to join a support group or talk to a counselor, psychologist, or other mental health professional. Others also find it helpful to turn to a leader in their faith or spiritual community.
There are many financial costs of cancer. Families must pay insurance deductibles, copayments, and for services that are not covered by insurance, such as transportation and home care help. Some caregivers give up their jobs and income so they can stay home with the patient, which makes it harder to pay for everything.
Caregivers who work may have less distress if they are able to take leave from work under the Family and Medical Leave Act (FMLA). FMLA applies to businesses with at least 50 employees. It allows employees to take time off from work for their own illness or a relative's serious medical condition without losing their jobs or benefits. Caregivers may take up to 12 weeks of leave.
Feelings of spiritual well-being may help lower the caregiver's stress. Keeping faith and finding meaning and hope have been shown to decrease the effect of caregiving stress on mental health. Spiritual well-being may help some caregivers be more hopeful, find meaning in the cancer experience, and be more accepting of what is. See the PDQ summary on Spirituality in Cancer Care for more information about spirituality and religion in cancer care.
Caregivers become caregivers for many different reasons. Some feel it is natural to care for someone they love. Sometimes there are practical reasons, such as no insurance or money to pay for other help. Whatever the reasons, giving care and support during cancer isn't easy, yet many caregivers find something positive from it.
Caring for a person with cancer causes many caregivers to look at life in new ways. They think about the purpose of life and they often focus on what they value most. For some caregivers, looking for meaning is a way to cope.
Some caregivers will have the following rewards:
- Find they can be strong during bad times.
- Have a better sense of self-worth or personal growth.
- Feel closer to the cancer patient.
Getting support from health care professionals may help caregivers find more positive rewards.