Caregiving at Home

Aprobado por la Junta Editorial de Cancer.Net, 05/2019

Many people with cancer receive a large part of their care at home instead of in a hospital. This means that family members who live with or near them may need to take on several day-to-day medical and non-medical responsibilities.

Being a family caregiver is challenging. But it can also be rewarding. There are many different strategies and resources you can use to ensure the best quality of life possible for your loved one and you.

Caring for the emotional well-being of the person with cancer

Living with cancer can be hard emotionally and physically. It is important to help the person with cancer find ways to cope with their emotions. A family caregiver can help him or her maintain a sense of control and support. The following tips can help.

Communicate. One of the caregiver's most important jobs is to talk openly with the person who has cancer. A lack of communication often leads to isolation, frustration, and misunderstandings. Choose a quiet time that is convenient for both of you to talk. Provide assurance that he or she will be a central part of all discussions. Tell them that you’ll ask if you can help with a specific task or decision instead of doing it on your own. Be open to the person’s feelings and opinions and fully explain yours. Discuss end of life wishes early during the disease and make sure that other family members are aware of them.

Include the person with cancer in activities that provide meaning or pleasure.
 Even if the person with cancer is no longer able to actively participate in activities he or she enjoys, look for other ways to encourage involvement. This helps the person stay connected to the world beyond the cancer and maintain a sense of normalcy for both of you.

Look for signs that they need help coping. A person living with cancer may experience a wide range of emotions. These include sadness, stress, anger, anxiety, depression, fear of side effects, and guilt. If you think the person you are caring for is struggling to manage their emotions, ask his or her health care team about resources that can help. These resources may include counseling, support groups, and relaxation techniques. Remember to take care of your own emotional health as well so you can be a more effective caregiver.

Accept the limitations of a person who is seriously ill. A person who just received chemotherapy may not be able to taste a meal you worked hard to prepare. Or, a person on pain medication may not notice all of the small things you do.

Participating in medical and physical care

Caregivers may be able to provide medical and physical care to their loved one. Consider taking the following steps to better manage what can be some of the most stressful responsibilities of caregiving.

Identify yourself to the health care team. Make sure the health care team knows who you are and what your caregiving role is. Ask the person you are caring for to fill out the appropriate Health Insurance Portability and Accountability Act (HIPAA) forms. This gives the health care team permission to speak with you or other individuals about the patient’s health care. Then you can set up appointments, ask questions, and advocate for your loved one.

Gather details about the illness. Learn more about cancer, including the patient’s type of cancer. Request a meeting with your loved one’s health care team to get clear, accurate information about the diagnosis, treatment, and prognosis, which is the chance of recovery. Many patient advocacy groups also can provide information related to specific cancers.

Go to appointments. Take an active role in the patient's medical care. If possible, go with him or her to all medical appointments. It is helpful to write down questions for the doctor beforehand and to write down answers. You can record answers with a tape recorder or your phone. In addition, give the doctor any new information that can help him or her make informed decisions. Learn more about communicating with the doctor.

Track information. Keep a record of medical appointments, test results, medications and dosages, symptoms and side effects, questions, and names and numbers for resources. Find out more about managing a patient’s care.

Learn how to provide proper physical care. Some patients may need you to provide physical care such as bathing, dressing, feeding, using the toilet, and grooming. For help, talk with the health care team, watch health care videos, or read materials that explain how to do these tasks.

Learn how to provide proper medical care. Family caregivers are now doing things that used to be done by trained health care professionals. This may include bandaging and wound care, help with catheters, giving injections, and dispensing medications. Before the person you are caring for leaves the hospital, ask the health care team to show you how to safely and effectively perform any medical tasks you will need to do at home.

Track and help manage symptoms and side effects. Talk honestly with the health care team about the symptoms and side effects the patient is experiencing. Palliative care, or supportive care, can relieve many side effects. Make sure your loved one tells you and the health care team all of symptoms, not just the major ones. Make sure you know how the doctor is treating them, and who to call if a new side effect appears. Your health care team can also explain how to use non-medical symptom management, such as massage or hot and cold compresses.

Manage medication carefully. Patients with cancer often take many medications. To get the most benefit, they must take them exactly as instructed. To manage multiple medications, create a list, chart, or spreadsheet, or use a free tracking app like Cancer.Net Mobile. It will help you to record:

  • The name of the medication

  • The dose

  • What it looks like

  • Prescribing doctor

  • When to take it

  • When it needs to be refilled

  • Any other instructions the doctor or pharmacist provides, such as to take with or without food

  • Any side effects that you notice

Explore professional home care services. Sometimes you cannot or may not want to handle certain physical and medical responsibilities. Consider contacting your loved one’s health care team for referrals to reliable home care services. These services can range from providing basic medical care to assisting with household tasks, meals, and personal care. Talk with the patient’s insurance company about which, if any, home care services are paid for.

Ask for help. Once you know what type of help the person you are caring for needs and wants, create a list of tasks. Then make a list of people who can help with those tasks. The list can include close friends and relatives, neighbors, local volunteers, and members of a religious community. There are many online tools that allow you to easily schedule support and communicate requests to your entire caregiving team. Learn more about sharing responsibilities.

Addressing financial issues

Caring for someone with cancer can be expensive for the patient and the caregiver. Talk with your loved one about who will perform medical services and how specific services, such as medications or therapy, will be paid. Knowing the financial status of the patient can help guide future health care choices. The following suggestions may help you manage cancer-related costs and reduce the stress they can cause.

Get permission to talk with the insurance company. You may need to talk with your loved one’s health insurance company about coverage and reimbursement issues. To be able to do this, your loved one needs to give permission to the insurance company.

Ask for an insurance case manager. Many insurance companies will assign a person to help manage insurance concerns for a person with a serious illness. This person can help you learn what’s covered by insurance, how to handle insurance issues, and find professional home care. Learn more about health insurance and cancer case managers.

Keep track of costs, conversations, and paperwork. Set up a system for organizing financial paperwork. Keep all medical bills, explanation of benefits reports from the insurance company, pharmacy receipts, and other receipts from health care expenses. Also, keep a written record of conversations you have with the insurance company, including the date, name of the person you spoke with, and what was said.

Ask for help managing costs. Talk about managing or lowering cancer-related medical and non-medical costs with your loved one’s health care team. Oncology social workers, case managers, doctors, and oncology nurses can help or provide referrals to support services and financial resources. There are also a number of national and local service organizations that help people with cancer who are having financial problems.

Learn what unreimbursed expenses can be claimed for tax purposes. Track any care-related expense that is not reimbursed by the insurance company. This includes the date of service, the amount paid, reason for expense, and name of the provider. You can request information from the IRS about claiming these expenses for tax purposes. You can also get help from a tax professional.

Addressing legal issues

If the person you are caring for cannot speak for themselves, certain legal documents can allow a designated person to communicate his or her treatment decisions and wishes. Work with your loved one to make health care decisions ahead of time by putting the following documents in place:

  • Advance directive. An advance directive tells the family and health care team who the patient wants to speak on his or her behalf if he or she becomes too sick to make decisions. It also provides information about the types of care the patient wants if he or she becomes too sick to express them. Advance directive forms are slightly different in every state. The National Hospice and Palliative Care Organization has free state forms and information. 

  • Health care representative form. A health care representative, also called a health proxy or medical power of attorney, is someone who tells others what a patient wants. This only happens if the patient’s doctor puts into writing that the patient is too sick to make decisions. If the patient has an advance directive, the health care representative follows it. Ask your loved one to choose a representative and fill out the appropriate form. 

  • Do not resuscitate (DNR) form. A DNR order says a patient does not want CPR if his or her heart stops beating. This is different than an advance directive, which says what a patient wants in future situations. A DNR is a medical order that applies as soon as it is written. A qualified health care provider must complete a DNR for a patient. Share this information with other family members.

  • Physician orders for life-sustaining treatment (POLST) form. A POLST form addresses whether to use CPR in an emergency. Therefore, POLST forms can include DNR orders, but can also state that you want and must be given CPR if your heart stops beating. Besides CPR, the form can include wishes on having antibiotics for certain types of infections and having a breathing or feeding tube. A qualified health care provider must complete a POLST for a patient.

  • Sign, share, and store documents. Once legal documents are in place, and properly witnessed, signed, or notarized, make sure that you know where they’re stored, especially if you’re the health care representative. Also, give copies of the documents to every place your loved one gets treatment. Learn more about these important legal documents.

If you have any questions or concerns about caregiving at home, talk with a member of the health care team. You are all working together to provide the best possible care for your loved one.

Related Resources

Caregiving Basics

When You Need Help With Caregiving Responsibilities

ASCO Answers Fact Sheet: Effective Caregiving at Home (PDF)

How to Clean Your Home When Caring for Someone With Cancer

More Information

American Cancer Society: If You’re About to Become a Cancer Caregiver

Family Caregiver Alliance: A Guide to Community Resources for Caregiving at Home

National Cancer Institute: Family Caregivers in Cancer