What is a caregiver?

The caregiver is an integral part of the cancer care team serving as an advocate, friend, and loved one to the patient.

As a caregiver, you have a huge influence on how a patient deals with their illness. Your encouragement helps the patient stick with a demanding treatment plan and take steps to get well, like eating healthy meals and getting enough rest.

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The caregiver's role during cancer treatment

Caregivers are often responsible for preventing mix-ups by keeping track of prescriptions, knowing which tests are to be done and bringing doctors up to speed. Caregivers may help loved ones with daily activities such as driving to appointments, picking up medicines, making meals or completing chores.

Helpful resources for caregivers:

When facing a cancer diagnosis, understanding and navigating the health care system can be a challenge in an already stressful time. Find resources to help you navigate health insurance coverage, so you can focus on what matters.

Navigating Insurance Coverage

Resources and Support for Caregivers

Just as patients experience challenges throughout their journey, caregivers also experience emotional, physical, and mental stress. They are often not trained for the caregiver job. Many times, they are the lifeline of the person with cancer.

Pediatric Caregiver Resources

The American Cancer Society offers several resources for families who are supporting a child with pediatric cancer. Resources address difficult topics like coping with the news of a diagnosis, helping siblings adjust to a new environment, and navigating the health care system when caring for a child.

Resources are available below:

Communicating with the Health Care Team

Many cancer patients need help talking with their care providers. Sometimes it’s because of age, sometimes because of illness. In these cases, the caregiver steps in to help listen, ask questions and let the team know how the patient is doing. Here are some simple steps caregivers can take to effectively have these vital conversations:

Try to keep good notes of your appointments from the beginning. Most patients and caregivers are overwhelmed by what they’re going through. Keeping a record of what you’ve been told can help you cut down on miscommunication and remember what you need to do.

Ask questions. It’s the health care team’s job to help patients and loved ones understand the condition, its treatment and its side effects.

Don’t expect yourself to remember every question you have for the doctor. Write them down in a notebook and bring them to your appointments.

Use that same notebook to take notes during the appointment. It will be easier to go back to these notes than to call the hospital about something you forgot.

Importance of self-care for caregivers

Being a caregiver can be exhausting, so it is important that caregivers take care of their own physical and mental health.

Stress from this demanding role can cause health problems, including insomnia, appetite changes, and feelings of anxiety, depression, or loneliness. You are not alone. About half of all caregivers don’t get enough continuous sleep, making them feel tired and leading to poor quality of life. It’s important you take care of yourself physically, mentally, and emotionally. Visit Healthier You for ways to take care of your health during this difficult time.

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Ways to Stay Mentally and Emotionally Healthy

  • Feeling overwhelmed? Try to arrange for respite care. Respite care is temporary care given to a person who is unable to care for himself or herself, so the person’s usual caregivers can have a break. If you’re having trouble finding someone to help, ask your loved one’s health care team about community resources.
  • If you have a loved one facing a cancer diagnosis, connecting with others can be a source of support and comfort. Reach out to family members, friends, those who share your faith, or a support group for emotional support.
  • Worried about money? Many caregivers provide financial support, reduce their work hours, or even quit their job to care for their loved one. Here is a list of resources that may be able to help.
  • Stay active. Regular physical activity can lower your risk for depression.

Source: https://www.cdc.gov/cancer/survivors/caregivers/caring-for-yourself.htm
Publication: https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver

See List of Resources

Transitioning Out of the Caregiver Role and Into Survivorship

Your loved one may continue to need assistance as they recover from treatment.

Survivorship can be a difficult time, too. Treatment offers a clear goal and an end date. Without this structure, you and your loved one may feel lost. As you transition out of the caregiver role and your loved one transitions to survivorship, remember to take things one day at a time.

Transitioning out of the caregiver role can be a gradual process. Talk to your loved one about what they need and how you can help. If your loved one is able to take on a more independent role, be supportive and encourage them to do so. Keep the lines of communication open.

After cancer treatment ends, there are many things you can do to support your loved one during survivorship. For example, you can:

  • Learn about the possible late side effects of treatment and keep an eye out for them.
  • Join your loved one at follow-up appointments and scans.
  • Help your loved one to collect medical records as they transition back to a primary care doctor and away from an oncology team.
  • Offer your loved one emotional support.
  • Create a survivorship care plan with members of the healthcare team and your loved one. The plan includes:
    • A summary of diagnosis and treatment
    • The responsibilities of all members of the healthcare team
    • A plan for follow-up care, a screening/testing schedule, and side-effect management.
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