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Family Caregivers in Cancer (PDQ®)

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.

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.

In addition to hands-on patient care, the caregiver may also do the following:

  • Be a companion to the patient.
  • Continue doing many of the patient’s household duties.
  • Take care of medicines and meals.
  • Schedule doctor visits, plan travel to and from the visits, and go with the patient to them.
  • Arrange for home visits by therapists or other professionals.
  • Deal with medical emergencies.
  • Take care of insurance matters.
  • Work through the health care system for the patient.

Caregivers worry about how they'll be able to do all this and also take care of themselves. The caregiver sometimes has to give up social activities and miss work. This can all be very hard and very tiring in a physical and emotional way for both the caregiver and the patient. These demands can be especially hard on older caregivers.

After Treatment Ends

Some patients and caregivers expect life to go back to the way it was before the cancer was diagnosed and this may not happen. Caregiver stress may continue after the patient's treatment ends, as roles change once again. Some caregivers have problems adjusting for the first year after the end of treatment. Part of this is caused by worry that the cancer will come back. When the caregiver is the partner or spouse of the cancer survivor, there may be sexual problems, also. Studies have shown that these adjustment problems usually do not last long. Problems with adjusting that can last a long time include the following:

  • Problems in the relationship between the caregiver and the patient.
  • Poor communication between the caregiver and the patient.
  • Lack of social support.

At the End of Life

Caring for a patient at home at the end of life brings a new set of challenges for the caregiver. The patient depends even more on the caregiver for physical and emotional support. The patient's symptoms also may be more difficult to manage. The caregiver may feel distressed by these new challenges and by not being able to take part in activities and interests that are important to him or her. The caregiver may feel even more distressed if the patient goes into hospice care. Studies have shown that caregivers have a lower quality of life and poorer health when giving the patient end-of-life care than they do during active treatment.

Some hospital or hospice programs offer end-of-life support services to improve the patient's quality of life and help both the caregiver and the patient. End-of-life support services include the following:

  • A team approach helping the patient and family with their physical, emotional, social, spiritual, and economic needs in order to improve the quality of life of the patient and caregiver.
  • Including the caregiver in medical decisions and managing the patient's symptoms.
  • Watching the caregiver for signs of distress and work with him or her to get the kind of help they need.

See the PDQ summary on Last Days of Life for more information about end-of-life care.

  • Updated: August 1, 2013