Adjusting to Life After Caregiving

Approved by the Cancer.Net Editorial Board, 04/2015

Listen to the Cancer.Net Podcast: Adjusting to Life After Caregiving, adapted from this feature

Key Messages:

  • Providing help and support to a person with cancer often becomes a caregiver’s focus for a long time.
  • In some ways, being a caregiver can be even more challenging than being a patient.
  • Once the patient starts to recover, it takes time for the caregiver to adjust to “normal life” after caregiving ends.
  • There are a number of strategies that can help you cope during this time of transition.

A caregiver plays an important role in supporting a person with cancer. A caregiver provides physical, emotional, and practical care daily or as needed. Many caregivers focus on providing this support, especially if a family member’s or friend’s treatment lasts for many months.

However, as the treatment and disease change, so does the caregiver's role. At some point, the need for caregiving will come to an end. This may be because the person you care for completes a planned course of treatment or goes into remission. Remission means the signs and symptoms of cancer decrease or disappear. At these times, a caregiver may struggle to adjust to returning to “normal life.” For help coping with the death of someone you cared for, read the grief and loss section of Cancer.Net.

What to do now

As a caregiver, you have devoted an enormous amount of time and emotional support to your family member or friend. When that person no longer needs you to provide care, it can affect your sense of purpose or self-worth. You may feel unsure of how to start a “new” life that does not include this role. These tips may help get you started:

Resume hobbies you enjoy. While acting as a caregiver, you may have been too busy to spend time on activities you enjoy. Or, you may have felt it was disrespectful to take time away from the person you cared for. Join or re-join an activity club, or dedicate time to a new hobby that you have wanted to try.

Re-establish relationships. Reach out to family members, friends, or co-workers that you may have fallen out of touch with while caregiving.

Take care of your body. The stress of caregiving often leads some people to develop or increase unhealthy habits. These could include smoking, eating unhealthy foods, or drinking too much alcohol. Focus on letting go of bad habits and make time to exercise, eat healthy foods, and get enough sleep. If you cannot make healthy changes on your own, talk with your doctor or a nurse.

Go back to work. If you have taken a leave of absence or left your job, consider returning. Staying busy may make it easier for you during this adjustment period.

Support a cause or help others. Although caregiving can be challenging, you may have found that providing your support was rewarding. Consider offering your time to organizations that help people with cancer. Or, get involved with cancer advocacy or another cause or charity that you feel strongly about. Learn more about being a cancer advocate and making a difference.

Write in a journal.
Writing about the stresses and events in your life provides a private way to express your feelings. It allows you look back at your journey and clarify new goals. Learn more about moving forward with journaling.

Coping with the fear that the cancer may come back

Transitioning into the future is a different experience when someone you cared for survives cancer than when someone passes away. Learning that a cancer has been treated successfully can bring a great deal of relief. However, just like the cancer survivor, you may be concerned about the cancer coming back. It can be difficult to accept that you cannot control or predict the health of the person you care about. These tips may help you manage your concern:

Understand the disease. The likelihood that a cancer will come back, or recur, depends on the type and stage of the cancer. It also depends on how well treatment worked. Many cancers have a pattern of recurrence. Talk with the person’s doctor, who can provide more information and statistics about the chance of a recurrence. You can also get a number of tips in this article about coping with the fear of recurrence.

Ask to stay informed. After treatment, people are given a plan for follow-up care. This follow-up care plan often includes visits to the doctor and sometimes a schedule for tests. Talk with the person about his or her follow-up plan. Ask if he or she will keep you updated, and how you can help them with following the plan. How much or how little you are involved in follow-up care depends on the person’s desires and needs. However, offering your support may help you feel less anxious about a recurrence.

Connecting with support resources

Sometimes a person may need help from others to adjust to life after caregiving. Several studies have shown that caregivers are at an increased risk for depression. Depression includes feelings of sadness and despair that interfere with daily activities. If you have these feelings or have other signs of depression, talk with your doctor to get help.

Counseling. Talking and receiving guidance from a trained mental health professional can help reduce stress. It can also improve your coping and decision-making skills and improve your overall quality of life. Talk with your doctor or another health care professional about what type of counseling might be best for you. Be sure to ask a potential counselor or therapist about his or her experience working with cancer caregivers. It is important to meet with someone who has expertise in this area.

Support groups. A support group is a safe place for you to share experiences and learn from others who have experienced caregiving. Ask your doctor, hospital discharge unit, or a social worker for help with finding one. Or, explore these online resources for caregivers.

More Information

Caregiver Support

Coping and Emotions