Web Exclusive: For the Caregiver: How to Make the Adjustment Post-Treatment

During the course of cancer treatment caregivers may spend 20 to 40 hours a week or more caring for the patient. All energy and attention is focused on getting through cancer treatment, and once it’s over, adjusting to life after cancer treatment can be a challenge for both the cancer survivor and the caregiver.

According to the National Cancer Institute, a common reaction from caregivers after treatment ends is, “Now what do I do?” It’s common for caregivers to feel confused, and although life probably won’t be the same once your role as caregiver ends, you can find a new normal for yourself and help the patient with their own transition as well. Here are some tips from the National Cancer Institute, Johns Hopkins Breast Cancer Center, and Mayo Clinic.

How to help yourself:

Give yourself credit for the time and hard work you poured into caregiving.

Allow yourself time to mourn, whether it’s for the loss of your loved one or the loss of a role you so strongly identified with.

Sort out your thoughts and feelings on the experience. Conflicting or confusing feelings are perfectly normal and it’s important to acknowledge and find ways to cope with them. It may be helpful to talk with someone who didn’t go through the cancer experience with you.

Write in a journal. Expressing things on paper may help you process emotions and feelings about what you are going through.

Take time each day to do something for yourself, whether it be exercising, keeping up with a hobby, seeing a movie, or napping.

Relax and self-reflect now that there is time for it. Some caregivers find deep breathing or meditation helpful.

Be patient and take things one day at a time.

Educate yourself about available resources that deal with survivorship.

Focus on other family and work issues that were put on hold during the patient’s treatment.

Ease back into your social environment.

Spend more time with friends and family. Seek out support from family, friends, or your faith community.

Think about ways you can best care for yourself, such as getting back into activities that you enjoy or finding new ways to connect with friends.

Seek professional help if you have difficulty with daily tasks, isolate yourself, engage in substance abuse, or experience persistent feelings of hopelessness.

How to help the patient:

Give your loved one time to come to terms with what has happened.

Ask the patient how he or she is doing now that treatment has ended. The answer may help you both.

Just because treatment is over doesn’t mean they no longer need support from family and friends. It’s important to let them know you are there to support them as much and as long as they need you.

Talk about whether counseling would be helpful. A counselor could help you and the patient cope with what has happened.

Help the patient to try and focus on the simple pleasures before taking on the big tasks and to appreciate day-to-day accomplishments.

See what things your loved one is ready to handle again—it’s important to be honest about what a person can and can’t do after treatment, and let the family know what to expect.

Emphasize that there is no rush in getting back to normal. Survivors need time to adjust. Let them take back old responsibilities as they are able to and understand that taking back some tasks may help life feel normal again, but they most likely are not ready or capable to do everything right away.

Help your loved one re-establish goals in life and hobbies enjoyed prior to treatment.

Find local survivorship support groups that may be helpful to your loved one as well as the whole family.

Encourage your loved one to keep a health journal to keep track of any symptoms or side effects that occur between follow-up appointments.

Focus on good nutrition and adequate rest to help your loved one regain physical strength.

Take this opportunity to deepen meaningful relationships.

Make sure the patient knows that it is normal to feel a range of emotions at this point, and it is OK to feel sad even after treatment is over.

Give your loved one some extra emotional support to help cope with physical changes or with feeling less adequate as a parent, partner, or friend.

Remember (and inform other family members) that recovery can be erratic and that the patient needs time to transition back to previous life.

For more information about life after caregiving, see the Summer CURE 2005 issue.