Caregiving after Treatment Ends

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Mother Standing with Daughters
Credit: iStock

It’s important for cancer caregivers to understand that even though treatment has ended, cancer survivors are still coping with a lot. Often they’re dealing with side effects from treatment and learning how to adjust to the many other changes they have gone through. They may not be returning back to normal life as soon as they had hoped.

Now What Do I Do?

Once treatment ends, most people want to put the cancer experience behind them. Still, one of the most common reactions by caregivers is to ask themselves, “Now what do I do?” They were used to having many roles, such as helping with medical care, managing household tasks, and coordinating visits and calls from friends. Many have to think about how to adjust to this “new normal.”

Until now, your focus has been on getting the patient through treatment. So it can be a time of mixed emotions - you may be happy treatment is over. But at the same time, the full impact of what you've gone through with your loved one may start to hit you.

Be Aware of Your Feelings

In some ways, I feel a loss. For a while, I was pulled in so many different directions as I took care of my family and my mother. But now that she's getting better, I miss feeling needed. I don't know what to do with myself.

Gloria

It's normal to have many different feelings after treatment ends. Some caregivers say that their feelings are even more intense after treatment, since they have more time to process it all.

You may be glad and relieved that your loved one is through with treatment. But you could also feel anxious because you're no longer doing something directed at fighting the cancer. You may feel a sense of sadness and loss at still seeing your friend or family member in a weakened state. This can also be a time when you feel more lonely and isolated than before.

Common feelings that you may have include:

  • Missing the support you had from the patient's health care team.
  • Feeling pressure to return to your old self.
  • Feeling lonely. Friends and family may go back to their daily lives, leaving you with more to do. They may not be checking in with you as they did when your loved one was getting treatment.
  • Avoiding going out with others for fear of something happening to your loved one while you are gone.
  • Finding it hard to relate to people who haven't been through what you have.
  • Having mixed feelings as you see your loved one struggle with moodiness, depression, or loss of self-esteem.
  • Worrying that any physical problem is a sign of the cancer returning. Yet at the same time, feel thankful that this person is here and part of your life.
  • Looking forward to putting more energy into the things that mean the most to you.

These feelings are all normal. You can manage them by giving yourself time to reflect on your experience with cancer. People need different amounts of time to work through the challenges that they’re facing.

Make Time for Yourself

If you've been putting your own needs aside, this may be a good time to think about how you can best care for yourself. Having some down time to recharge your mind and spirit can help you cope. You may want to think about:

  • Getting back to activities that you enjoy
  • Finding ways others can help you
  • Finding new ways to connect with friends

For example, some caregivers feel the need to give back to others who are facing cancer. They turn their energy to helping people in their community, joining support groups, or volunteering with cancer organizations. For many, making a difference in the lives of others helps them to help themselves.

Let Others Help You

You may feel tempted to tell people that you and your loved one are doing fine and don't need help. It may be that you don't want to trouble people any longer. Chances are that both of you are tired and are still getting used to life after treatment. It may help to tell others that you're still adjusting and let them know ways they can help. Family, friends, neighbors, and coworkers who stayed away during treatment may now be willing or able to support you. Think about what types of support would be helpful. The clearer you can be about your needs, the easier it will be to get the help you need.

However, be aware that others may not be there to help. They may feel awkward about helping or assume that you're getting back to your routine and don't need help any more. Or they may have personal reasons, such as lack of time or things going on in their own lives.

Talking with Family

Try to remember that this time after treatment is new for all. Your family members may also need time to adjust to this new chapter of life for your loved one. Some points you can make:

  • Advise them that recovery may take more time than expected. Your loved one may lack energy for a while and need time to get into a new routine.
  • Ask them to continue doing your loved one's regular duties and tasks until he can get back to a normal routine.
  • Let them know what the follow-up care will be and how your loved one will be monitored.
  • Be honest about what types of support are needed from them now that treatment is over.
  • Thank them for all they did during treatment.

Good communication is just as important now as it was during cancer treatment. Listening to each other, patience, and support can make a big difference.