Family Caregivers in Cancer (PDQ®): Supportive care - Patient Information [NCI] - Help for the Caregiver
Caregivers have a very hard job and it's normal to need help.
Although caregiver assessments are used to plan support for the family caregiver, they are not always done. It's important for caregivers to ask for help when they need it. Many people who were once caregivers say they did too much on their own. Some wished that they had asked for help sooner. The best time to find out where to get help is when the patient is diagnosed with cancer. All through caregiving, it's important to watch for signs of caregiver strain and get help right away. Caregivers who take care of their own needs have the strength to carry on and be a better caregiver.
Purpose of This Summary
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about the treatment of childhood ependymoma. It is intended as a resource to inform and assist clinicians who care for cancer patients. It does not provide formal guidelines or recommendations for making health care decisions.
Reviewers and Updates
This summary is reviewed regularly and updated as necessary by the PDQ Pediatric Treatment...
Support services can be chosen to help where the caregiver needs it.
Support for the caregiver may include education and information, coping skills, counseling and psychotherapy, family meetings, home care help, and hospice care.
Education and Information
Family caregivers usually have many questions and feel unsure about some things when they begin caregiving. Information and education can help caregivers feel less stressed and more comfortable in their role. Programs that introduce patients and their caregivers to new cancer facilities and services may help.
Since cancer treatment can last for a long time and the disease goes through many changes, the kind of information caregivers need changes over time. Important times for the caregiver to receive information include the following:
When the patient is in the hospital.
When care at home begins.
At the start of new treatments.
If the cancer recurs (comes back).
At the end of life.
There are many ways caregivers can get information:
Call a cancer information specialist at 1-800-4-CANCER (1-800-422-6237).
Search the Internet.
Read booklets, pamphlets, fact sheets, and information cards.
Use touch-screen and other computer information systems at hospitals and doctor offices.
Learn from DVDs that teach caregiving skills.
Caregivers often want to know facts about the cancer, caregiving skills, and how to manage symptoms and side effects.
Facts about the cancer
How the cancer will change over time.
Symptoms the patient may have.
What the treatments may be.
Side effects that may be caused by the cancer or the treatments.
What the caregiver is expected to do
Caregivers report that they learn most of their caregiving skills by trial and error and would like more information from the health care team. Moving the patient safely and decreasing the risk of falls are skills caregivers say are the most difficult. Some of the skills caregivers may need to learn are:
How to move the patient.
How to help the patient walk.
How to place pillows to make the patient comfortable.
How to give medicines and treatments.
What to do in medical emergencies.
How to solve problems.
How to take care of themselves.
Many caregivers also want to know about getting outside help to care for the patient at home.
How to manage symptoms and side effects
When the caregiver is trained in how to help the patient manage side effects of treatment and symptoms such as pain and fatigue, the patient is more likely to have the energy and will to continue with treatment.
Pain is a symptom that is a serious concern for cancer patients and for their caregivers. Most family caregivers know little about pain and how to manage it. For pain to be controlled well, the patient needs to receive the pain medicines as prescribed by the doctor. A caregiver's knowledge and beliefs about pain medicine may affect the patient's pain relief. A caregiver who is afraid the patient will become addicted or take an overdose may give the patient too little pain medicine. When the caregiver knows the facts about pain medicines and the right way to use them, the patient is more likely to have better pain control. The caregiver can talk to a doctor who is expert in treating pain and get the information and emotional help he or she needs to control the patient's pain.
Caregivers may need to learn the following:
What medicines to use and how and when to give them.
How to tell if a medicine is working and common side effects of the medicine.
How to know when the medicine is causing side effects.
The health care team also can help caregivers learn ways to manage symptoms without medicine, including the following: