What You Need to Know as a Cancer Caregiver

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Taking care of yourself

It’s hard to plan for a major health problem like cancer. Suddenly you’ve been asked to care for the person with cancer, and you’re also needed to help make decisions about medical care and treatment. None of this is easy. There will be times when you know you’ve done well, and times when you just want to give up. This is normal.

There are many causes of stress and distress in cancer caregivers. Dealing with the crisis of cancer in someone you love, the uncertain future that lies ahead, financial worries, difficult decisions that must be made, and unexpected and unwanted lifestyle changes are just a few of them. Fear, hopelessness, guilt, confusion, doubt, anger, and helplessness can take a toll on both the person with cancer and the caregiver. And while the focus tends to be on the patient, all of this affects the physical and mental health of the caregiver, too.

Depression is common in caregivers. But caregiving does not always cause depression and not all caregivers have the difficult emotions that go with depression.

Everyone has emotional ups and downs, but if a person always feels down, has no energy, cries a lot, or is easily angered, it may be a warning sign of depression. Many people see the feelings of depression as a sign of weakness rather than a sign that something is out of balance, but ignoring or denying these feelings will not make them go away.

Early attention to symptoms of depression can make a big difference in how the caregiver feels about their role and how well they can do the things they need to do. There are ways to help reduce stress and remind you to enjoy life. They might help prevent a more serious depression that can develop over time:

  • Support from family and friends in caring for the patient
  • Exercise
  • A healthy diet
  • Spiritual support, such as religious activity, prayer, journaling, or meditation
  • Recreational time, when you can enjoy friends socially
  • Help from a trained mental health professional

But caregivers often focus on the person with cancer and don’t take care of themselves. You may be a caregiver, but you still have your own needs that cannot and should not be put aside. Please see our document called What it Takes To Be a Caregiver. If you have concerns about how well you’re doing, please also see the Distress Checklist for Caregivers, and the Coping Checklist for Caregivers.

Know what you can’t do

Some caregivers feel like they have to do it all alone. They may believe that, as the partner, sibling, son, or daughter that they are responsible for the sick loved one. It’s painful for them to admit that they can’t do it all and still keep their own health and sanity. They’ll bend over backwards to meet their loved one’s every need. Some feel guilty if they can’t do it all and say they feel “selfish” if they ask for help. These are people who, if they spot their loved one falling, will dash over to try and catch them. They don’t think about their own injuries or wellness. When they end up seriously injured or sick, they become unable to help anyone.

Set realistic limits on what you can do. For instance, if you have a back injury, and/or if your loved one is too big for you to lift, you may be able to help them roll over in bed, but don’t try to lift them alone or catch them when they fall. There are ways you can safely help a person sit up or walk but you have to learn how to do it without hurting yourself. This is where expert help is needed – home care nurses or physical therapists can show you how to do it safely. They can also help you get special equipment if it’s needed. Your own health and safety must come first if you want to keep helping your loved one.

When you need help, reach out to others, including professionals. Talk with your loved one’s doctor or nurse about what you are doing and where you need help. Involve them in your life and your loved one’s care.

Where do I find support for me?

There are many kinds of support programs, including one-on-one or group counseling and support groups. A support group can be a powerful tool for both people with cancer and those who care about them. Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas from others that might help you.

Some groups are formal and focus on learning about cancer or dealing with feelings. Others are informal and social. Some groups are made up of only people with cancer or only caregivers, while others include spouses, family members, or friends. Other groups focus on certain types of cancer or stages of disease. The length of time groups meet can range from a set number of weeks to an ongoing program. Some programs have closed membership and others are open to new, drop-in members.

Online support groups may be another option. The Cancer Survivors Network, an online support community of your American Cancer Society, is just one example. You can visit this community at http://csn.cancer.org. There are many other good communities on the Internet that you can join, too.

Support in any form allows you to talk about your feelings and develop coping skills. Studies have found that people who take part in a support group have an improved quality of life, including better sleep and appetite. You can contact your American Cancer Society to find out about available sources of support in your area.

Religion can be a source of strength for some people. Some find new faith during a cancer experience. Others find that cancer strengthens their existing faith or their faith provides newfound strength. If you are a religious person, a minister, rabbi, other leader of your faith, or a trained pastoral counselor can help you identify your spiritual needs and find spiritual support. Some members of the clergy are specially trained to help people with cancer and their families.

People who are not religious may find spiritual support in other ways. Meditation, journaling, and being outside in nature are examples of different ways a person may feel they are part of something greater than themselves. For others, serving at a local homeless shelter or other types of volunteer work may renew their energy.

Last Medical Review: 03/05/2014
Last Revised: 04/28/2014