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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.

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.

  • 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. 

  • 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 

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. 

  • 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

father holding his young daughter
  • As you’re setting up care for the person with cancer, you might also need to tap into other parents and trusted friends and neighbors for help with your children.
  • Children can sense stress in their family members and notice that there’s less time for them.
  • Even though your time is limited, you’ll need to take time to check in with them to learn about their fears and concerns. 

For caregivers who have to quit their job

Caregiving itself can be a full-time job, but many caregivers already have paying jobs. There will be times when there will be more demands on the caregiver, for instance, when the patient is diagnosed, getting cancer treatment, getting treatment for recurrence, or nearing the end of life. The employed caregiver may end up having to take time off from their paying job for caregiving.

  • If you need some time away from work, speak with your boss or benefits office.
  • If your workplace has an Employee Assistance Program (EAP), look into what it offers.
  • The Family and Medical Leave Act (FMLA) guarantees up to 12 weeks off per year to take care of a seriously ill family member (spouse, parent, or child). It only applies to larger companies, and not every employee qualifies for it. If you can’t or don’t want to stop working, you might be able to take unpaid time off under the FMLA.

Can my loved one keep working during treatment?

Your loved one with cancer often wants to keep working through treatment. In some cases, it’s possible. In others, it doesn’t work well.

Taking time off: The employee with cancer who wants to keep his or her job may be able to take some time off during treatment, using either company benefits or the Family and Medical Leave Act (FMLA).

Wanting to keep working: Facing cancer often brings with it an increased sense of the importance of work in a person’s life. Working can boost self-worth and help the person focus on what they’re able to do rather than on their illness.

Returning to work after treatment: As curative treatment (treatment aimed at producing a cure) winds down and the doctor checks the patient for any remaining signs of cancer, the patient may be given the “all clear” to go back to work. Or it may be that your loved one needs to slowly increase their work duties – this will depend on their physical condition and the type of job they have. 

For caregivers who have to leave their job

When caregivers quit their jobs, they usually lose their employer’s health insurance coverage as well as their source of income. It’s very important for you still to have some type of health care coverage. If you’re able to pay for your own insurance, COBRA will allow you to be covered for some months after you leave your job. Another option might be insurance from the Health Insurance Marketplace.

What do I need to know about my loved one’s health insurance?

The most important thing for adults and children with cancer is having a health insurance plan that covers needed cancer treatments. It’s key to keep your health insurance coverage with no coverage gaps. As a caregiver, it’s especially important to know these things about health insurance:

  • DO NOT let health insurance lapse.
  • Pay health insurance premiums and other costs in full and on time.
  • If you are changing insurance plans, don’t let one policy lapse until the new one goes into effect. This includes when you are switching to Medicare.
  • Know the details of your loved one’s individual insurance plan and its coverage. Ask the plan administrator for a Summary of Benefits (SPB).
  • When possible, call the insurer to make sure that any planned medical service (such as surgery, procedures, or treatments) does not require prior authorization.
  • If a bill looks odd or wrong, make sure to call or email the insurer to avoid being mistakenly charged more than you should.
  • Submit claims for all medical expenses, even when you’re not sure if they’re covered.
  • Keep accurate and complete records of all claims submitted, pending (waiting), and paid.
  • Keep copies of all paperwork related to claims, such as letters of medical necessity, explanations of benefits (EOBs), bills, receipts, requests for sick leave or family medical leave (FMLA), and correspondence with insurance companies.
  • Get a caseworker, a hospital financial counselor, or a social worker to help if finances are limited. Often, companies or hospitals can work with you to make special payment arrangements if you let them know about your situation.
  • Send in bills for reimbursement as you get them. If you become overwhelmed with bills or tracking your medical expenses, get help from trusted family members and/or friends. Contact local support organizations, such as your American Cancer Society or your state’s government agencies, for extra help.

Call the American Cancer Society at 1-800-227-2345 to get referrals to programs that offer financial assistance related to prescription drug coverage and co-pay assistance. 

Cancer Information for Caregivers

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.

  • 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. 

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.

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.

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.

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.

  • Respect your own feelings, needs, and desires, as well as those of the patient.
  • Speak out about your feelings while being sensitive to those of others.
  • Try to use “I” statements rather than “you” statements.” For instance, say, “I need a break” instead of “You never help me!”
  • Focus on the present rather than bringing up old patterns of hurt.

When you talk to your loved one, assure them that they are your main concern. Try something like:

  • “This is a scary time for both of us, but I want to be here for you to help you get through this. You’re not alone.”
  • “I’ll do whatever I can to help you through this. I might do the wrong thing sometimes, or not know what to do, but I’ll do my best.”
  • “We can do this together. Let’s try to be open with each other and work with each other no matter what happens.”
kind woman comforting an older woman

  • If your loved one is having symptoms or worsening symptoms that they don’t tell you or the doctor about, this can become a problem.
  • Try to understand the patient’s reasons for withholding information. You may want to start gently; keep in mind the patient is probably already distressed.
  • Sit down with your loved one.
  • Ask if there’s something they would like to tell you. If the answer is no, ask if there’s something they don’t want to tell you. Give your loved one a moment to consider it.
  • Point out that you’ve noticed signs of a new problem or worsening symptoms. Remind them that this could be a serious problem, or just a new symptom that may be easy for the doctor to address.
  • Mention how the problem is affecting both of you.
  • If the patient still denies the problem or refuses to discuss it, get help from other loved ones the patient trusts. Or you can call the doctor to share your concerns and find out if there’s something else you can do.

  • It’s good to know that you and your loved one don’t always have to agree.
  • Remember to let the person with cancer make decisions about their care whenever possible.
  • Explain your needs and wants clearly, and let the patient do the same.
  • Offer choices or a time limit when decisions need to be made.
  • Focus your energy and influence on the issues that are most important.

man talking to his doctor in the exam room

The caregiver is often the link between the patient and the cancer care team. In general, the cancer care team can share information with you anytime you are with the patient. But there are laws that protect private health information. These laws affect what medical information your loved one’s cancer care team can talk to you about when the patient isn’t present. The simplest and most common way is for the patient to sign a release form that lets the doctor discuss their care with you.

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

It’s normal to grieve over the changes that cancer brings to a person’s life. But if a person has been sad for a long time, they may have clinical depression. Clinical depression causes great distress, impairs functioning, and might even make the person with cancer less able to follow their cancer treatment plan.


If the person you are caring for has symptoms of clinical depression, encourage them to get help.

illustrations showing symptoms of depression (low energy, dark or empty mood, trouble focusing on thoughts)

Some of these symptoms, such as weight changes, fatigue, or even forgetfulness can be caused by the cancer itself and its treatment. But if 5 or more of these symptoms happen nearly every day for 2 weeks or more, or are severe enough to interfere with normal activities, it might be depression.

If you suspect you may be depressed, see a doctor. Make time to get the help and support you need as a caregiver.

Symptoms of clinical depression

  • Ongoing sad, hopeless, or “empty” mood for most of the day
  • Loss of interest or pleasure in almost all activities most of the time
  • Major weight loss (when not dieting) or weight gain
  • Being slowed down or restless and agitated almost every day, enough for others to notice
  • Extreme tiredness (fatigue) or loss of energy
  • Trouble sleeping with early waking, sleeping too much, or not being able to sleep
  • Trouble focusing thoughts, remembering, or making decisions
  • Feeling guilty, worthless, or helpless
  • Frequent thoughts of death or suicide (not just fear of death), suicide plans or attempts

Things to do to help

  • Encourage your loved one with depression to continue treatment for depression until symptoms improve, or to talk to the doctor about different treatment if there’s no improvement after 2 or 3 weeks.
  • Promote physical activity, especially mild exercise such as daily walks.
  • Help make appointments for mental health treatment, if needed.
  • Provide transportation for treatment, if needed.
  • Engage the person in conversation and activities they enjoy.
  • Remember that it’s OK to feel sad and grieve over the losses that cancer has brought to their lives, and to yours.
  • Realize that being pessimistic and thinking everything is hopeless are symptoms of depression and should get better with treatment.

Things not to do

  • Keep feelings inside.
  • Force someone to talk when they’re not ready.
  • Blame yourself or another person for feeling depressed.
  • Tell a person to cheer up if they seem depressed.
  • Try to reason with a person whose depression appears severe. Instead, talk with the doctor about medicines and other kinds of help.

It’s normal to feel afraid when you’re sick. People may be afraid of uncontrolled pain, dying, or what happens after death, including what might happen to loved ones. And, again, these same feelings may be experienced by family members and friends.

If a person has these symptoms most of the day, nearly every day, and they are interfering with his or her life, a mental health evaluation could be helpful.

Symptoms of anxiety and fear

  • Anxious facial expressions
  • Uncontrolled worry
  • Trouble solving problems and focusing thoughts
  • Muscle tension (the person may also look tense or tight)
  • Trembling or shaking
  • Restlessness, may feel keyed up or on edge
  • Dry mouth
  • Irritability or angry outbursts (grouchy or short-tempered)
lone senior man looks out of his window

Things to do to help

  • Encourage, but do not force, each other to talk.
  • Share feelings and fears that you or the anxious person may be having.
  • Listen carefully to each other’s feelings. Offer support, but don’t deny or discount feelings.
  • Remember that it’s OK to feel sad and frustrated.
  • Get help through counseling and/or support groups.
  • Use meditation, prayer, or other types of spiritual support if it helps.
  • Encourage your loved one to try deep breathing and relaxation exercises. They should close their eyes, breathe deeply, focus on each body part and relax it, start with their toes and work up to their head. When relaxed they should try to think of a pleasant place such as a beach in the morning or a sunny field on a spring day.
  • Encourage the person you’re providing care for to talk with a doctor about using anti-anxiety or anti-depressant medicines.

Things not to do

  • Keep feelings inside.
  • Force someone to talk if they’re not ready to.
  • Blame yourself or another person for feeling fearful or anxious.
  • Try to reason with your loved one if their fears and anxieties are severe; talk with the doctor about medicines and other kinds of help.

Panic attacks can be an alarming symptom of anxiety. Panic attacks happen very suddenly and often reach their worst within about 10 minutes. The person may seem fine between attacks, but is usually very afraid that they will happen again.

*If a person is having any of the first 5 symptoms (marked with *), it can mean an urgent or life-threatening condition. Call 911 or the doctor right away if your loved one unexpectedly has any of these.

Symptoms of a panic attack

  • Shortness of breath or a feeling of being smothered*
  • Racing heart*
  • Feeling dizzy, unsteady, lightheaded, or faint*
  • Chest pain or discomfort*
  • Feeling as if they’re choking*
  • Trembling or shaking
  • Sweating
  • Fear of losing control or “going crazy”
  • An urge to escape
  • Numbness or tingling sensations
  • Feeling “unreal” or “detached” from themselves
  • Chills (shaking or shivering) or hot flashes (may involve sweating or facial reddening)

These symptoms can be signs of other, more serious problems such as shock, heart attack, blood chemistry imbalance, collapsed lung, allergic reaction, or others. It’s not safe to assume that they are panic-related until diagnosed by a doctor.

If the person you’re providing care for has had panic attacks in the past, and it happens again exactly like it did before, they can often recognize it as a panic attack. If they recover completely within a few minutes and has no more symptoms, it’s more likely to have been a panic attack. If panic attacks are diagnosed by a doctor, brief therapy and medicines have been shown to be helpful.

illustration showing the symptoms of a panic attack (shortness of breath and a feeling of choking, racing heart, feeling dizzy or faint, chest pain) and what to do of you have them (calling a doctor or 911)

Things to do to help

  • Check with their doctor to be sure that the symptoms are caused by panic and not another medical problem.
  • Stay calm and speak softly during a panic attack.
  • Sit with your loved one during panic attacks until they are feeling better.
  • Call for help if needed.
  • After the panic attack is over, encourage the person to get treatment for the panic attacks.
  • Provide transportation to treatment if needed. Your loved one may be afraid that a panic attack will happen while driving.
  • The ideas listed under the section “Tips for Handling Anxiety and Fear” may also be helpful for someone having a panic attack.

Things not to do

  • Minimize or make light of the person’s terror or fear.
  • Judge your loved one for feeling scared and acting strangely.
  • Try to talk the person out of their fear or other feelings.
  • Hesitate to call the doctor if you have questions about what’s happening.

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.

close up of hands of group of people in conversation

It’s normal to feel overwhelmed sometimes by caregiver responsibilities. But if it becomes a constant problem, you may need to see a mental health professional. Below is a list of serious signs of trouble. Get professional help if you:

  • Feel depressed, physically sick, or hopeless
  • Feel like hurting yourself or hurting or yelling at the people you care for
  • Depend too heavily on alcohol or recreational drugs
  • Fight with your spouse, children, stepchildren, or other family members and friends
  • Are no longer taking care of yourself

The social services department at the hospital or doctor’s office may be able to help you or direct you to someone who can. They may be able to suggest support groups in your area for friends and families of people with cancer. Sometimes the hospital chaplain or your own clergy can help. Asking around to find good counselors can be another way to get the support and help you need.

Just as people with cancer should not spend all their time thinking about their illness, neither should family members and friends spend every minute thinking about or being with their loved ones. Caregivers need relief and rest to stay emotionally and physically fit and be able to help the person with cancer. Many caregivers feel guilty when they take time for themselves, but even a brief time away can serve to restore you and allow you to “recharge your batteries.” Just a couple of hours may make a big difference; ask for help.

When you need help, reach out to others, including professionals. Talk with the cancer care team about what you’re doing and where you need help. Involve them in your life and your loved one’s care.

senior woman does yoga in white room

Respite care is the term used to describe short-term, temporary relief for those who are caring for family members who might otherwise need professional care. In most cases, the respite caregiver comes to the home and gets to know the patient, the family routine, and things like where medicines are stored. Sitter-companion services are one respite option. This is sometimes offered by local civic groups, church or religious groups, and other community organizations.

Depending on your state, Medicaid or Medicare may help cover respite costs. Also check with the patient’s health insurance to see what kind of respite help might be offered.

Call the American Cancer Society at 1-800-227-2345 to find respite services in your area.

Caregivers have been shown to have less distress and feel less burdened when they have social support. Human connections can help you stay strong. Let people know what you need and ask for help. You cannot and should not try to be responsible for all the caregiving by yourself.

Here are some tips for including family and friends:

  • Look for situations where you need help. Make a list or note them on a calendar.
  • Hold regular family meetings to keep everyone involved. Use these meetings as updates and care-planning sessions. Include the patient.
  • Ask family and friends when they can help and what jobs they think they can do. You may also contact a person with a certain request. Be very clear about what you need.
  • As you hear back from each person, note it on your list to make sure they have taken care of what you needed.

*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.

1/

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

2/

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

3/

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

4/

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

5/

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

6/

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

7/

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

8/

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

9/

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

10/

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

11/

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

12/

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

13/

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

14/

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

15/

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

16/

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

17/

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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  • 8
  • 9
  • 10

18/

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.

  • 1
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  • 10

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.

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. 

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