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Family Caregivers in Cancer (PDQ®): Supportive care - Patient Information [NCI] - The Caregiver's Point of View

Caregivers need help and emotional support.

A caregiver responds in his or her own way to the cancer patient's diagnosis and prognosis. The caregiver may feel emotions that are as strong as or stronger than those felt by the patient. The caregiver's need for information, help, and support is different from what is needed by the patient.

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The life of a family caregiver changes in many ways when cancer is diagnosed. These changes affect most parts of life and continue after treatment ends.

The caregiver's role changes as the patient's needs change during and after cancer treatment.

Key times when the caregiver's role changes and new challenges come up are at diagnosis, during treatment at the hospital, when the patient needs care at home, after treatment ends, and at the patient's end of life.

At Diagnosis

Family caregivers take an active role that begins when the cancer is being diagnosed. The caregiver has to learn about the kind of cancer the patient has and new medical terms. The caregiver also goes with the patient to new places for treatment and helps the patient make treatment decisions.

During Treatment at the Hospital

The patient may ask the caregiver to be the one to talk to the health care team and make important decisions. The relationship between the caregiver and the patient affects how well this works. Disagreements between the patient and caregiver can make important decisions harder to make and affect treatment choices. In addition to talking to the health care team, the caregiver may also do the following:

  • Take on many of the patient's household duties.
  • Schedule hospital visits and plan travel to and from the visits.
  • Work through the health care system for the patient.
  • Arrange for home care.
  • Take care of insurance matters.

During the active treatment phase, a caregiver needs to meet the demands of supporting the patient as well as the demands of home, work, and family. This may be physically and emotionally exhausting.

During Care in the Home

When the patient moves from one care setting (such as the hospital) to another (such as the home), it can be stressful for the patient and the caregiver. The patient usually would rather be at home, which is a familiar and comforting place. The return home usually means more work for the caregiver.

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