Caregiving After Cancer Treatment Ends

Shifting your focus away from cancer treatment

The day treatment ends for your loved one is often a day of celebration. But it can also be a time of reflection and thinking about other things that are important to you. Still, one of the most common reactions caregivers have is to ask themselves, “Now what do I do?” They're 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.”

Your loved one is also coming to terms with all they have been through. They still may be:

• coping with the effects of treatment and adjusting to all the changes.
• needing extra emotional support to cope with physical changes or feeing less adequate as a parent, partner, or friend.
• learning what to do for their follow-up care.
• trying to figure out their “new normal.” This means getting back to their old life, but in a way that’s probably different than before.

All of the above may apply to you too. Taking time for yourself and finding a new sense of normal is a process for you too. Give yourself grace as you adjust to the changes.

Feelings after cancer treatment

You may have many different feelings after treatment ends for your loved one. Some caregivers say that their feelings are even more intense after treatment, since they have more time to process it all.

Until now, your purpose may have been to get your loved one through treatment. As things change, it may be a time of mixed emotions. You may be happy they’re done with treatment, but at the same time, the full impact of what you've both gone through may start to hit you.

You may have more free time now to focus on things you may have put on hold. But you could also feel anxious because you're no longer doing something directed at fighting the cancer.

Common feelings you may have include:

• Missing the support you had from the patient's health care team.
• Feeling stress from all you've been through.
• Missing being needed or being busy.
• 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.
• Surprise that there are still many challenges to face.
• 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 other emotions.
• Worrying that any physical problem your loved one has is a sign of the cancer returning.

These feelings are all normal. People recover at different paces. Give yourself time to cope with what you and your loved one have gone through.  It’s okay to express your feelings as you deal with the transition from treatment. You don’t have to be upbeat all the time or pretend to be cheerful. Allow yourself to rest and recharge without guilt.

Many caregivers say that the strong feelings they had right after treatment ends often lessen with time. But if you feel overwhelmed, think about talking to counselor or member of the clergy. You could also ask the hospital social worker about caregiver support groups.

Getting help 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. Some steps could include: 

• Taking downtime when you can to recharge your mind and spirit.
• Focusing on family and work issues that were put on hold.
• Spending more time with friends and family.
• Getting back to things you enjoy.
• Thinking about new types of short- and long-term goals.
• Practicing self-compassion for everything you've done and been through.

After cancer treatment, let others know when you still need help.

• 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 or that you’re still getting used to life after treatment. But if you do need support, it may help to tell others that you're still adjusting and that you could use some 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.
• 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 to your loved one

After your loved one’s cancer treatment, here are a few things to consider: 

• Give yourselves time to adjust to the transition.
• Your loved one may need extra emotional support to cope with physical changes or with feeling less adequate as a parent, partner, or friend.
• If one partner is feeling anxious or sad, it can be a strain on both of you.
• Keep in mind that if your loved one is acting angry or frustrated with you, it could be that they are still trying to adjust to recovery

For partners, intimacy can be different than it used to be. This can be caused by feeling tired or having pain. Treatment may also have affected your partner’s interest in sex or energy to perform.

You can still have an intimate relationship in spite of these issues. Intimacy isn’t just a physical connection. It also involves feelings. If you can, talk about concerns you have. Allow time and space to talk when ready. Try not to judge or take it personally if your partner is acting differently right now. And remember that you can always talk to a counselor for help.

Talking with family and children after treatment

Many caregivers say that going through treatment together made their family closer. But for families who were having trouble talking before the cancer, the problems may seem more intense now. Emotions that were put on hold may start to surface.

Try to remember that this time after treatment is new for all.

Your children and other family members may also need time to adjust to this new chapter of life for your loved one. Some points you can make:

• Tell them that recovery may take more time than expected. Your loved one may lack energy for a while and need time to adjust to this new normal.
• Let them know if your loved one has any remaining side effects that may make doing certain activities hard.
• Ask them if they can keep helping with your loved one's regular duties and tasks until they can get back to a normal routine.
• Let them know what the follow-up care will be for your loved one.
• Be honest about what types of support are needed from them now that treatment is over.
• Invite them to ask questions when they need to.
• Thank them for all they did during treatment.

For adult children, roles may have changed, which can affect families in ways they never expected. For example: 

• Adult children may have trouble accepting that recovery may take more time than expected.
• Adult children who have been taking care of a parent may have a hard time letting them make her own decisions again.
• Parents of adult children with cancer may still feel a need to protect them and stay involved.

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. It’s important to seek help when you need to. Ask a counselor or social worker to hold a family meeting if necessary.  For detailed information about talking to children, family, and friends, see When Someone You Love Is Being Treated for Cancer. 

People need different amounts of time and support to work through the challenges that they’re facing. Above all, many say that they're thankful that their loved one is here and part of their life. They’re looking forward to putting more energy into the things that mean a lot to them.