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.
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.
Despite the sadness and shock of having a loved one with cancer, many people find personal satisfaction in caring for that person.
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.
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.
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.
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:
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.
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.
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.
Good communication lets you express yourself, help others understand your limits and needs, and understand the limits or needs of the person with cancer.
When you talk to your loved one, assure them that they are your main concern. Try something like:
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.
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.
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.
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.
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.
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.
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.
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:
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.
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:
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.
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.