Caregiving can be a full-time job, but help is available for this very important role.
If you are helping to care for a loved one with cancer, you are a “caregiver.” You may see what you’re doing as something natural: taking care of someone you love. Still, for many people, caregiving isn’t easy. But there are many things you can do to make it less difficult.
This e-booklet is designed to help you, the caregiver. It is filled with tips from the professional oncology social workers at CancerCare, a national nonprofit organization that has helped people with cancer and their caregivers for more than 70 years. Our social workers are specially trained to help people cope with the emotional and practical challenges of cancer.
Read this e-booklet straight through, or refer to different sections as you need them. Some sections may not apply to your situation. Use this booklet in whatever way works best for you. Be sure to talk with your loved one often about what they feel would be most helpful.
The Role of the Caregiver
Caregivers provide important emotional, practical and physical care for a person with cancer. Often, caregivers are family members or friends. They may live with, nearby or far away from the person they care for.
There are many different ways to be a caregiver. Caregiving can mean helping your loved one with daily activities, such as getting to the doctor or preparing meals. It can also mean helping the person cope with feelings that come up during this time.
The kind of support that a caregiver provides will be different for each person. In general, caregiving tasks fall into three categories: medical, emotional and practical. This e-booklet provides many examples of things in each of these categories that caregivers can do to help.
Helping to Manage Your Loved One’s Treatment
Sometimes, a person diagnosed with cancer feels overwhelmed and may need someone to help them sort through treatment options. Or, they may want someone there to help listen to the doctor’s instructions. A person receiving treatment might need a caregiver’s help in managing side effects or taking medication.
Here are some ways to help manage your loved one’s treatment:
Gather information. Learn about your loved one’s diagnosis and possible treatment options. One good place to start is by asking the doctor or nurse what resources they recommend. There are also many reliable websites and cancer organizations that can provide accurate, up-to-date medical information. Please see the ‘Introduction’ tab for a list of reliable websites.
Go to medical appointments together. Before a visit with the doctor, write down any questions the two of you would like to ask. Bring a notebook or portable voice recorder, so you can keep track of the doctor’s answers and refer to them later.
If you need to speak with the health care team without your loved one present, find out about the rules of the Health Insurance Portability and Accountability Act (HIPAA). This law gives patients greater access to their own medical records and more control over how their health information is used. Your loved one will need to give written permission, by signing a consent form, before doctors can share information with you about their medical treatment.
Learn how to help with physical care. Depending on how they are feeling, people going through cancer and treatment may need help with a wide range of activities they would normally do themselves, such as bathing or dressing. Ask your loved one to let you know how they want you to help with these tasks.
Ask about special instructions. Check with the doctor or nurse to find out if there are any specific instructions you should be aware of. For example, are there any tips for managing a particular side effect, or does a special diet need to be followed during treatment? Keep the doctor’s phone number in a place that is easy to find in case you have questions.
Learn about organizations that help with medical care. If you need help managing some of your loved one’s medical needs, ask your doctor or hospital social worker about local home health agencies. These agencies may send nurses to the home to give medications, monitor vital signs or change bandages, for instance. Home health agencies can also send care providers who attend to other personal needs such as bathing, dressing, cooking or cleaning.
Providing Emotional Support
Going through cancer is often described as an emotional roller coaster, with many ups and downs. As a caregiver, you may see your loved one go through a wide range of emotions. While this can be difficult for both of you, your willingness to listen and offer support will make a difference.
It is hard to watch someone you care about go through so many difficult emotions. There are things you can do, however, to help both of you cope:
Listen to your loved one. It is important to listen without judging or “cheerleading.” We are often tempted to say “you will be fine” when we hear scary or sad thoughts. But simply listening to and validating those feelings can be one of the most important contributions you make.
Do what works. Think about how you’ve helped each other feel better during a difficult time in the past. Was a fun outing a helpful distraction? Or do the two of you prefer quiet times and conversation? Do whatever works for you both, and don’t be afraid to try something new or make modifications to plans that you enjoyed before.
Support your loved one’s treatment decisions. While you may be in a position to share decision making, ultimately it is the other person’s body and spirit that bear the impact of the cancer.
Get information about support groups. Joining a support group gives your loved one a chance to talk with others coping with cancer or caregiving and learn what they do to manage difficult emotions. Sometimes, support groups are led by social workers or counselors. Ask a hospital social worker for a referral, or contact CancerCare. We offer face-to-face, telephone, and online support groups for people with cancer.
If it’s needed, continue your support when your loved one’s treatment is over. This can be an emotional time for many people. Despite being relieved that the cancer is in remission (stopped growing or disappeared), you and your loved one may feel scared that it will return. The end of treatment also means fewer meetings with the health care team, on which you and your loved one may have relied for support. You may also have questions about how treatment ending impacts your role as a caregiver, so getting support during this transition can be helpful.
Recommend an oncology social worker or counselor specially trained to offer advice. If you think your loved one may need additional support coping with his or her emotions during this time, suggest speaking with a professional who can help, such as an oncology social worker.
Helping Your Loved One with Practical Matters
In addition to helping with medical and emotional concerns, caregivers often help by taking on many practical tasks. Some day-to-day activities caregivers can do include running errands, pitching in with household chores, preparing meals and helping with child care.
Because cancer can also place a tremendous strain on a family’s finances, caregivers are often left with the task of managing financial issues, too. Fortunately, there are many resources available to help.
Here are some tips for finding financial help for costs related to cancer:
Review your loved one’s insurance policies to understand what’s covered. Your insurance company can assign a case manager who can explain what services and treatments the plan does and doesn’t cover and answer any questions. Case managers work for insurance or other types of agencies. They help clients gain access to resources and services. He or she can also help explain any out-of-network benefits the policy may offer, such as medical services from doctors not on your insurance plan.
Understand what your loved one is entitled to. Some types of aid for people with cancer are required by law. These programs are called entitlements—government programs that give financial and other aid to people in certain groups such as those with cancer. A hospital or community social worker can direct you to the governmental agencies that oversee these programs.
Ask for help. If you need help with hospital bills, speak to a financial counselor in the hospital’s business office. He or she can help work out a monthly payment plan. If your loved one expects to run out of money, or has already, talk to his or her creditors. Many landlords, utilities and mortgage companies are willing to work out a payment plan before a crisis develops. Reaching out for help early on is most helpful.
Apply for financial help. For many people, expensive cancer medicines pose a financial challenge. Fortunately, there are many programs to help qualified individuals get medications for free or at a low cost. For more information, contact the Partnership for Prescription Assistance, listed among the resources. CancerCare also provides financial help. We provide limited grants for cancer-related costs such as transportation and child care. We also provide referrals to other organizations that can provide assistance. Call us at 800-813-HOPE (4673) to learn more.
Taking Care of Yourself
Taking care of a loved one can be a positive experience. For example, some people say that caregiving strengthened their relationship. But it can also be very stressful. Many caregivers say it often feels like a full-time job. Caregiving can be even more challenging if you have many other responsibilities, like working, raising children, or caring for your own health.
Sometimes, caregivers tend to put their own needs and feelings aside. It is important, though, for you to take good care of yourself. This will make the experience less stressful for you.
Caregivers spend a lot of time looking after the health of their loved ones. This often means that the caregiver spends less time focusing on his or her own needs, such as eating well and exercising. Yet taking care of your own physical health is an important part of caregiving.
Here are some tips for caring for your health:
Stay active. Experts recommend exercising for at least 30 minutes each day. Activities can include walking quickly, jogging, or riding a bike. Keep in mind that you don’t have to set aside a lot of time to exercise—you can work it into your day. For example, take the stairs instead of the elevator, or park your car farther away than you normally do. Some exercises can also be done in the home, such as yoga.
Pay attention to what you’re eating. Keeping a balanced diet is an important part of taking care of yourself. Include fruits and vegetables in your meals. Nuts, yogurt, and peanut butter sandwiches are easy snacks with lots of protein that will keep your energy level up. Pack snacks if you know you will be with your loved one at the doctor’s office or the hospital all day.
Get enough sleep. Caregiving can be emotionally and physically draining. You may find yourself more tired than usual. Try to get enough sleep.—The Center for Disease Control and Prevention (CDC) recommends at least seven hours per night for adults Also, take naps if you need them.
Rest regularly. As a caregiver, you may find that it is hard to relax, even if you have time for it. Deep breathing, meditating, or gentle stretching exercises can help reduce stress.
Keep up with your own checkups, screenings, and medications. Your health is very valuable. Stay on top of your own medical appointments, and have a system for remembering to take any medicines you need to stay healthy.
Getting Emotional Support
Caregiving is hard work that can affect your emotional well-being. Taking care of yourself includes coping with many of your own feelings that come up as you care for your loved one. Many people feel more emotional than usual when they are coping with a loved one’s cancer. This is normal.
You cannot make difficult feelings go away, but there are things you can do to feel better.
Here are some tips for coping with the emotional impact of your loved one’s cancer:
Take a break. If possible, take some time out for yourself regularly. Even if it’s just for a few minutes, doing something you enjoy can help you recharge. For example, listening to relaxing music or going for a walk might help you clear your head.
Be aware of your limits. Remember that there are only so many hours in a day. Feel free to say “no” when people ask you to take on tasks you don’t have the time or energy to complete.
Keep a journal. Writing sometimes helps people organize their thoughts and come up with practical solutions. Writing about your thoughts, feelings, and memories can also strengthen your spirit.
Open up to friends and family. Ask friends or family members if they would be willing to be “on call” in times of stress. Or plan a regular “check-in” time when you can get together or call each other.
Consider developing your spiritual side. For some people, this means participating in religious activities. Others find spirituality in art or nature. No matter what your beliefs are, developing your spiritual side could provide comfort during this time.
Talk to a helping professional about your feelings and worries. Many caregivers feel overwhelmed and alone. You may need more than friends or family members to talk to. Speaking with a counselor or oncology social worker may help you cope with some of your feelings and worries. CancerCare’s oncology social workers are just a phone call away.
Join a support group for caregivers. Talking with other caregivers can also help you feel less alone. CancerCare offers free face-to-face, telephone, and online support groups for caregivers. These groups provide a safe haven where you can share your concerns and learn from others who are going through similar situations.
Go easy on yourself. Sometimes, you may feel you could have done something differently. Try not to be too hard on yourself. Focus on all the positive things you are doing for your loved one.