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.

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Caregiving 101

Communication

Coping

Caregiver Self-Care

Caregiver Resources

Caregiver Distress Quiz

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.

Common Caregiver Challenges

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.

Explore our series of guides that offer extensive information on helping children understand and deal with cancer in another family member.

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.

Get more detailed information about dealing with health insurance.

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

More on Caregiving 101

Things to think about if you are about to become a caregiver for a person with cancer.

Information about caregivers as the unpaid loved ones who give the person with cancer care.

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.

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: 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.”

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.

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.

More on Communication

Things to think about if you are about to become a caregiver for a person with cancer.

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.

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)

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.

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.

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.

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.

Telephone: 1-800-227-2345

The American Cancer Society has programs and services to help people with cancer and their loved ones understand cancer, manage their lives through treatment and recovery, and find the emotional support they need. And best of all, our help is free.

Provides a state-specific respite locator to find local programs and services that help caregivers to a break from caregiving.

Telephone: 1-703-838-9808

Sponsors www.therapistlocator.net which provides referrals to local marriage and family therapists. The site also contains educational materials on helping couples live with illness, as well as other issues related to families and health.

Telephone: 1-877-333-5885

Tools, worksheets, and tips on how to plan, prepare, and succeed as a caregiver. Includes information on caregiving options, housing, legal issues, financial matters, care for the caregiver, and more.

We understand that coping with a diagnosis can be overwhelming and that cancer impacts all aspects of your life. APOS is committed to helping direct patients and caregivers to resources, programs and
support that may ease the cancer journey.

Telephone: 1-800-813-4673

CancerCare provides free, professional support services (online, telephone, and in-person) for caregivers and loved ones, as well as caregiving information and additional resources.

Telephone: 1-877-467-3638

Volunteers provide free and confidential one-on-one telephone support for people with cancer and family members.

Telephone: 1-866-843-2572

A non-profit program offering free and confidential information and resources on cancer-related legal issues to cancer survivors, their families, friends, employers, health care professionals, and others coping with cancer.

Telephone: 1-888-793-9355

Provides professional social work services, education, and support programs free of charge for all people affected by cancer. The website provides a range of information, tools and support to help you cope with the impact of cancer.

Telephone: 1-202-454-3970

Supports and educates family caregivers, helps them connect with other caregivers; and helps them become their own advocates. Membership is free to caregivers.

Anyone with cancer, their caregivers, families, and friends can benefit from help and support. The American Cancer Society partners with CaringBridge, a free online tool that allows people dealing with illnesses like cancer to stay in touch with their friends, family members, and support network by creating their own personal page where they share their journey and health updates.

Telephone: 1-800-445-8106

Provides information and resources for long-term caregiving, including practical skills, how to hold family meetings, decision-making, assistive equipment, online support. Search their Family Care Navigator to find state-specific resources.

Online grief support email groups for adults and children. A minimal monthly fee is required.

Telephone: 1-800-395-5755

GriefShare seminars and support groups are led by people who understand what you are going through and want to help. The online locator will find support groups near you.

Telephone: 1-800-526-7234

JAN provides free consulting services for individuals with physical or intellectual limitations that affect employment. Services include one-on-one consultation about job accommodation ideas, requesting and negotiating accommodations, and rights under the Americans with Disabilities Act (ADA) and related laws.

Connects caregivers who need help to people who want to provide help and offers tools to help caregivers coordinate their caregiving teams online or with a mobile app.

Telephone: 1-301-718-8444

A non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.

Telephone: 1-202-547-7424

Search the Home Care/Hospice Agency Locator, containing the most comprehensive database of home care and hospice agencies.

Telephone: 1-800-422-6237

An excellent source of up-to-date information about cancer for patients and their families. Caregivers can also search the NCI-supported clinical trials by zip code.

Telephone: 1-800-677-1116

Find services and local respite programs funded by the Administration on Aging (www.aoa.gov). These programs, along with other state and community-based services, help to reduce depression, anxiety and stress that caregivers may feel.

Telephone: 1-703-837-1500

Offers CaringInfo (www.caringinfo.org), which provides free resources to help people make decisions about end-of-life care and services before a crisis. Download your state-specific Advance Directive.

Telephone: 1-866-615-6464

For information on symptoms, diagnosis, and treatment of mental disorders.

Telephone: 1-212-741-2247

Counseling, information, and support groups for gay, lesbian, bisexual & transgender elder caregivers.

Telephone: 1-877-726-4727

For substance use/abuse treatment referrals and information. Find alcohol, drug, or mental health treatment facilities and programs around the country with the Behavioral Health Treatment Services Locator.

Telephone: 1-800-273-8255

A 24-hour, toll-free, confidential hotline available to anyone in suicidal crisis or emotional distress providing prevention counseling and information.

Telephone: 1-800-669-4000

Provides information about employment discrimination laws and describes how to submit a formal complaint to an employer where discrimination might exist.

Telephone: 1-855-260-3274

Services and support for veterans and their caregivers, including a Caregiver Toolbox.

Telephone: 1-800-838-0879

A national, non-profit membership organization (dues are charged) that provides emotional support to spouses and partners of chronically ill and/or disabled people.

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

Caregiver Resource Guide

Caring for a loved one with cancer

What is a cancer caregiver?

What does a caregiver do?

What does it feel like to be a caregiver?

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

Common Caregiver Challenges

Caring for your children during this time

Helping Children When a Family Member Has Cancer

Handling work situations

Working During Cancer Treatment

Returning to Work After Cancer Treatment

Managing health insurance

Understanding Health Insurance

Cancer Information for Caregivers

Basics

Treatment

Find a Cancer Type

More on Caregiving 101

If You're About to Become a Cancer Caregiver

What Is a Cancer Caregiver?

Communicating with your loved one

How do you talk to someone who has cancer?

Ways People Deal With a Cancer Diagnosis

Venting anger and frustration

Acting passive

Fear and anxiety

The "blame game"

Communication Tips for Cancer Caregivers

How do I communicate clearly?

What do I do when the patient won't share information with me?

What if we can’t agree on something important?

How do I talk with the cancer care team?

More on Communication

Communication for the Cancer Caregiver

Coping with cancer

Common Emotions After a Cancer Diagnosis

Depression

Tips for handling clinical depression

Anxiety and fear

Tips for handling anxiety and fear

Panic attacks

Tips for handling panic attacks

Finding Support for Yourself

Get professional help if you think you need it

Take a break or time for yourself

Respite care provides a much-needed break

Ask others for help

American Cancer Society Programs and Services

ARCH Respite Network

American Association for Marriage and Family Therapy

AARP: Caregiving Resource Center

American Psychosocial Oncology Society (APOS)

CancerCare

Cancer Hope Network

Cancer Legal Resource Center

Cancer Support Community (The Wellness Community and Gilda’s Club)

Caregiver Action Network (CAN)

CaringBridge

Family Caregiver Alliance (FCA)/National Center on Caregiving

GriefNet

GriefShare

Job Accommodation Network (JAN)

Lotsa Helping Hands

National Alliance for Caregiving (NAC)

National Association for Home Care and Hospice Location Service

National Cancer Institute (NCI)

National Family Caregiver Support Program

National Hospice and Palliative Care Organization (NHPCO)

National Institute of Mental Health (NIMH)

SAGE Caring and Preparing

Substance Abuse and Mental Health Services Administration (SAMHSA)

Suicide Prevention Hotline

U.S. Equal Employment Opportunities Commission

Veteran Affairs Caregiver Support Program

Well Spouse Association (WSA)

Caregiver Distress Quiz

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

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

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