Adjusting to Life After Caregiving

Approved by the Cancer.Net Editorial Board, 06/2013

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 main 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, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused 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, and eventually, the need for caregiving will come to an end. When the person you care for goes into remission (meaning the signs and symptoms of cancer decrease or disappear) or completes a planned course of treatment, a caregiver may struggle to adjust to returning to “normal life.” Here are some tips to help during this time of transition. If you are looking for help coping with the death of someone you cared for, you may be interested in Coping with Change After a Loss or other articles in the grief and bereavement 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 your help in the same way, your sense of purpose or self-worth may be affected. 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 activities you enjoy. While you were acting as a caregiver, you may have been too busy, or felt it was disrespectful, to spend time on activities that made you happy. 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 you were acting as a caregiver.

Take care of your body. The stress of caregiving can lead some people to develop or increase unhealthy habits, such as smoking, eating unhealthy foods, or drinking too much alcohol. Focus on letting go of bad habits and making time to exercise, eat healthy foods, stay hydrated, 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 you gained a sense of satisfaction from providing your support. 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, 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 a future that does not include caregiving is a different experience when someone you care about survives cancer than when someone passes away. Learning that a cancer has been treated successfully can bring a great deal of relief. However, just as the cancer survivor may be concerned about the cancer coming back, it is normal for a caregiver to have the same worry. It can be difficult to accept that you have no way to control or predict the health of the person you care about, but 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, as well as the response to the given treatment. Many cancers have a predictable pattern of recurrence. Talk with the person’s doctor, who can provide more information and statistics about the likelihood 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 successful treatment of cancer, people are given a plan for follow-up care, which usually includes visits to the doctor and sometimes a schedule for tests. In standard follow up for many cancers, there are fewer scans or blood tests given than was true in the past. This does not mean that close attention is not being paid, but, rather, that the value or benefit of those tests has not been proven. Talk with the person about the plan they have been given. 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, which includes feelings of sadness and despair that interfere with daily activities. If you are experiencing these feelings or have other signs of depression, talk with your doctor to get help.

Counseling. Talking about the challenges you are facing and receiving guidance from a trained mental health professional can help reduce stress, 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 based on your needs. When you call a potential counselor or therapist, be sure to ask about his or her experience working with cancer caregivers. It is important to meet with someone who has expertise in this particular 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.

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