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Caregiver Resource Guide

The American Cancer Society Caregiver Resource Guide is a tool for people who are caring for someone with cancer. It can help you: learn how to care for yourself as a caregiver, better understand what your loved one is going through, develop skills for coping and caring, and take steps to help protect your health and well-being.

Caregiving 101

Caring for a loved one with cancer

When you become a caregiver for someone with cancer, you have questions. Lots of them. Get an overview of what caregivers do and how your role is important in the cancer journey.

What is a cancer caregiver?

What is a cancer caregiver?

  • Caregivers may be partners, family members, or close friends.
  • Most often, they’re not trained for the caregiver job. 
  • Many times, they’re the lifeline of the person with cancer.
  • As a caregiver, you have a huge influence on how the cancer patient deals with their illness. 

What does a caregiver do?

What does a caregiver do?

  • Solves problems for the person with cancer
  • Is part of the cancer care team
  • Involves the patient in managing their care
  • Takes care of day-to-day tasks 

What does it feel like to be a caregiver?

What does it feel like to be a caregiver?

Despite the sadness and shock of having a loved one with cancer, many people find personal satisfaction in caring  for that person. 

  • Caregiving can also be frustrating and painful. 
  • Caregivers can develop physical symptoms, like tiredness and trouble sleeping. 

What if you don't want to be a caregiver?

What if you don't want to be a caregiver?

  • It’s normal to feel overwhelmed, burdened, and even trapped at times while caregiving. 
  • Addressing the problems early can help you and your loved one get the help you need, and if you have to, make other plans for care.

 

  • In situations like this, it might be helpful to find someone to help you with caregiving so that you know from the start that the role will be shared. 

Common Caregiver Challenges

Cancer Information for Caregivers

More on Caregiving 101

Communication

Communicating with your loved one

When someone close to you has cancer and starts to talk about it, do you change the subject? Do you stand in silence, worried that you'll say the wrong thing? If so, you're not alone.

How do you talk to someone who has cancer?

How do you talk to someone who has cancer?

  • When talking with your loved one, the most important thing is just to listen.
  • Try to hear and understand how they feel.
  • Try to put your own feelings and fears aside.
  • Let them know that you're open to talking whenever they feel like it.

Ways People Deal With a Cancer Diagnosis

These are some of the more common responses people have when diagnosed with cancer. 

 

Venting anger and frustration

Venting anger and frustration

What this is: People with cancer sometimes take out their anger and frustration on those around them. This can upset family members and friends. 

Why this happens: People often vent their feelings onto those close to them. They do this because these people are safe outlets. They know you’ll still be there for them, even if they behave badly or create tension. So the person with cancer may take out angry feelings on family, friends, or anyone who happens to be around.

Acting passive

Acting passive

What this is: Sometimes a person with cancer seems to become childlike and passive, looking to others for direction.

Why this happens: Try to understand that this is one way of acting out how helpless and weak they feel.

What to do: Though the disease may limit their ability to do some things, it’s usually best for the person with cancer to keep living as normally as possible. You may feel the need to overprotect your loved one, but in the long run that probably isn’t helpful.

Fear and anxiety

Fear and anxiety

What this is: The cancer diagnosis and treatment phase is usually an anxious and uncertain time. 

Why this happens: Because they have so much anxiety in their lives, your loved one with cancer may seem upset or frightened for no reason that you can see.

The "blame game"

The "blame game"

What this is: Sometimes people with cancer blame themselves for getting the disease because of something they did or did not do. As a caregiver, you may also feel guilty or you may blame them, too.

What to do: Blaming yourself and each other can be barriers to a healthy relationship. Encourage your loved ones and the patient not to blame themselves for what’s going on. Moving forward is the only option. If you feel guilty as a loved one or friend, it’s OK to express your regrets, apologize, and move on.  

Communication Tips for Cancer Caregivers

Good communication lets you express yourself, help others understand your limits and needs, and understand the limits or needs of the person with cancer.

More on Communication

Coping

Coping with cancer

Most patients, families, and caregivers face some degree of depression, anxiety, and fear when cancer becomes part of their lives. These feelings are normal responses to such a life-changing experience.

Common Emotions After a Cancer Diagnosis

Caregiver Self-Care

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.


Finding Support for Yourself

It’s hard to see a loved one in pain or suffering through side effects of cancer treatment. If you need help coping with your feelings about their illness, know that help is available.

 

Caregiver Resources


*Inclusion on this list does not imply endorsement by the American Cancer Society.

Caregiver Distress Quiz

There are many causes of stress and distress in cancer caregivers. Dealing with the crisis of cancer in someone you love, the uncertain future, financial worries, difficult decisions, 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 will affect your physical and mental health, too. Caregivers are often so concerned with caring for their relative’s needs.

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During the past week or so... I have had trouble keeping my mind on what I was doing

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During the past week or so... I have felt that I couldn’t leave my relative alone

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During the past week or so... I have had difficulty making decisions

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During the past week or so... I have felt completely overwhelmed

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During the past week or so... I have felt useful and needed

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During the past week or so... I have felt lonely

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During the past week or so... I have been upset that my relative has changed so much from his/her former self

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During the past week or so... I have felt a loss of privacy and/or personal time

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During the past week or so... I have been edgy or irritable

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During the past week or so... I have had sleep disturbed because of caring for my relative

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During the past week or so... I have had a crying spell(s)

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During the past week or so... I have felt strained between work and family responsibilities

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During the past week or so... I have had back pain

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During the past week or so... I have felt ill (headaches, stomach problems or common cold)

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During the past week or so... I have been satisfied with the support my family has given me

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During the past week or so... I have found my relative’s living situation to be inconvenient or a barrier to care

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On a scale of 1 to 10, with 1 being “not stressful” to 10 being “extremely stressful,” please rate your current level of stress.

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  • 10

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On a scale of 1 to 10, with 1 being “very healthy” to 10 being “very ill,” please rate your current health compared to what it was this time last year.

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Results:

You are in high distress

  • Eat healthy, well-balanced meals and snacks throughout the day.
  • Take a 15-30 min walk around the neighborhood; do squats or sit-ups while watching TV; intentional exercise.
  • Try using deep breathing or meditation to calm your mind; also effective is yoga for muscle relaxation.
  • Ask for help from family and friends; people may be unaware of how overwhelmed you are and are willing to assist.
  • Return to your favorite hobbies.
  • Prioritize each day to help manage your time throughout the day; get help for more difficult or tedious tasks.
  • Consider seeing a therapist to discuss how to cope with the demands of caregiving.
  • Contact us at 1-800-227-2345 for local resources for respite, support, or counseling.
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Results:

You are in low distress

It isn’t unusual for caregivers to have some of these problems for a short time. But they may mean that you’re at risk for higher levels of distress. When caregivers don’t attend to their own needs and allow other pressures to take over, they may lose the ability to continue to care for their loved one. Part of caring for someone else is caring for yourself.

You may want to learn more about managing caregivers’ responsibilities. You can learn more about caregiving on our website. You can also get ideas about healthy coping from our Coping Checklist for Caregivers.

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