Caregivers are valued people in a cancer patient’s support system. Being a caregiver involves taking on many different roles and tasks, all of which will depend on the unique needs of your loved one with cancer.
Caregivers can influence how the patient deals with their illness physically and emotionally.
What Is a Cancer Caregiver?
Caregivers are a primary source of help and support for a person with cancer, but are usually not paid for their work. They are often family members, partners, or close friends without formal medical training. Some people are uncomfortable with the term “caregiver” and prefer to think of themselves as a “care partner” or simply as the spouse, partner, parent, or friend of someone with cancer. No matter what term you use, caring for someone with cancer is one of the most important and loving things a person can do.
Common Caregiver Responsibilities
Cancer caregivers may have a wide range of responsibilities and roles. Often, they act as extensions of the health care team by providing day-to-day support for the patient. They help the patient find their way through challenges and communicate with other loved ones about the patient’s health. Some caregivers may find themselves filling new roles and doing new tasks for their loved one after a cancer diagnosis.
Health Care Tasks
The health care-related responsibilities of a caregiver will vary with the type of cancer and treatment the patient receives. These responsibilities may include:
- Giving medication
- Managing side effects
- Going to doctor appointments and taking notes
- Reporting problems to the health care team
- Keeping the patient comfortable while in the hospital or receiving treatment
Caregivers often support the daily needs of the patient. Some common day-to-day responsibilities are:
- Keeping family members and friends informed of the patient’s condition
- Shopping for groceries
- Preparing meals and feeding
- Bathing, grooming, and dressing
- Cleaning and doing laundry
- Paying bills
- Providing transportation to appointments, tests, and treatments
Providing Emotional Support
Caregivers also play an important role in the emotional and social support of people with cancer. Caregivers can fulfill these needs by:
- Encouraging the patient to share their feelings
- Providing companionship
- Noticing changes in the patient’s mood that may indicate depression, anxiety, or distress
- Finding peer-to-peer support groups or counseling for the patient
- Arranging visits from other friends and family
There are several organizations that provide support, resources, and assistance to caregivers:
- American Psychological Association
- Cancer Support Community
- Caregiver Action Network
- Family Caregiver Alliance
- National Alliance for Caregiving
- National Coalition for Cancer Survivorship
- Rosalynn Carter Institute for Caregiving
Challenges of Being a Caregiver
Being a caregiver to someone with cancer can be hard, and there are some factors that can make it more difficult. Being aware of these issues early on can help you feel in control and help you set expectations along the way.
Adjusting to a New Role
Becoming a caregiver is often unexpected. Here are some tips to help you adjust to your new role:
- Take some time to process what is happening and what this means for you.
- Talk to your loved one with cancer about what will be expected of you, but keep in mind that your responsibilities might change over time.
- Be patient, realistic, and flexible. There will be many new, unknown, and uncontrollable things ahead.
- Meet with other family and loved ones who may want to be involved in caregiving. Find out who will be able to help and in what ways.
Some cancers may not respond to treatment or may be diagnosed too late to be treated. Additionally, some people with cancer may decide to stop treatment to focus the time they have left elsewhere. These situations can be particularly distressing for caregivers, but the National Cancer Institute’s booklet When Someone You Love Has Advanced Cancer can help you get through this difficult time.
Being far away from a loved one with cancer is hard—and even harder when you are a caregiver. Caregiving from a distance can be expensive and emotionally difficult. It’s common for long-distance caregivers to feel guilty for not being closer or cut out of the loop on important decisions.
Caregiving for Your Parent
As people live longer, it becomes more likely that older adults with cancer will rely on their grown-up children to be their caregivers.
In many cases these caregivers are also parents themselves, which means they are responsible for the well-being of their parents and children at the same time. Caring for children and a sick parent or relative at the same time can lead to a lot of daily strain. If you’re a “sandwich generation” caregiver, consider these points:
- Reprioritize parts of your life. What used to be a high priority might need to be placed on the backburner for a while.
- Get organized. Take some time to organize schedules and to-do lists. Staying organized will help you stay in control.
- Ask for help. There’s no need to do this alone! Ask friends and family to help out.
- Don’t lose yourself. You are much more than a parent and a caregiver. Take time to do the things that make you unique.
- Take time for self-care. Eat right, get plenty of sleep, and do the things that make you feel recharged, fulfilled, and in control. Self-care activities are different for everyone.
In other cases, a caregiver is an only child or the only sibling in their family who isn’t married or a parent. In these situations, caregivers may feel forced into a caregiving role and have fewer support resources. If you’re an only child caregiver or feel like you don’t have enough support in your family, try these tips:
- Explore caregiving resources. There are lots of organizations that provide information, resources, and support for caregivers.
- Find meaning and purpose in caregiving. Change the way you think about being a caregiver and try to find positive parts in the experience.
- Reach beyond your family. Relatives aren’t the only ones who can help you in your times of need. Reach out to close friends when you need a helping hand or someone to talk to.
People with cancer have to understand the different systems, processes, or issues that they may come across during and after cancer treatment. As a caregiver, you will need to understand and possibly take the lead in working through these systems, processes, or issues.
Health Insurance & Health Care
A health insurance plan that covers cancer treatments is very important for someone with cancer. Caregivers may help by:
- Paying health insurance premiums and other costs associated with health insurance and health care.
- Asking about payment plans or lower rates.
- Enrolling the patient in a health insurance plan to make sure that there are no gaps in coverage.
- Contacting the insurance company about billing and coverage questions.
- Keeping accurate records of all claims, receipts, reimbursements, and explanations of benefits.
- Sending in bills for reimbursement.
- Looking into financial and co-payment assistance options.
Some people with cancer continue to work while they get treatment and others are too sick or weak to keep up with their jobs. You can help your loved one decide how much work—if any—is right for them and help them explore options with their employer. The patient’s job may be protected for some time under the Family Medical Leave Act (FMLA), which allows up to 12 weeks of unpaid leave each year for certain medical conditions.
As a caregiver, you may take on financial management for your loved one. In addition to managing the financial side of health care, you may become responsible for the payment of rent, any mortgages, utilities, transportation, and other expenses the patient must pay.
Cancer can create financial strain on the patient and the caregiver. Here are some resources that can help you find and receive financial assistance:
- BenefitsCheckUp (National Council on Aging)
- Compassionate Allowances (Social Security Administration)
- Cancer Financial Assistance Coalition
- Partnership for Prescription Assistance
- Needy Meds
Caregivers should understand patient protections, informed consent procedures, and other legal documents and procedures that they might come across during cancer treatment.
All medical care requires the consent of the patient or someone who is authorized to give approval on behalf of the patient. Informed consent means that a patient and/or their caregivers are aware of the risks of treatment options and are given enough information to make an educated decision. As a caregiver, you may be given the power to provide consent.
An advance health care directive is a legal document that states your loved one’s health care wishes to their doctor. These may include setting up power of attorney, a living will, or do-not-resuscitate orders. As a caregiver, you should know whether your loved one with cancer has advance directives, what they say, and who is allowed to make decisions for the patient.
In addition to working through health insurance, financial, and legal matters for your loved one with cancer, you will have to do the same for yourself.
If you are caring for your spouse, partner, or child, the costs of health insurance, treatment, and prescriptions can cause financial strain. Sometimes caregivers may spend more money than usual on transportation and food, or may pay for their loved one’s groceries, cleaning supplies, or other unplanned costs. There are resources that can help you find financial assistance.
The financial cost of being a caregiver can be stressful. Be sure to take care of your mental and emotional well-being throughout the caregiver experience.
Juggling work and caregiving can be tough. You may need to take time off work to go to appointments, pick up prescriptions, or help your loved one with day-to-day tasks at home.
Legal Protections and Employee Benefits
Caregivers are not protected under the Americans with Disabilities Act (ADA) and therefore do not have the right to the accommodations received by people covered by ADA. Check your state’s family and medical leave laws, which may be more protective than the ADA.
Some employers may offer more benefits than the law requires. Talk to your boss or human resources department to understand your benefits and how they may help you as a caregiver. You could also speak with your employer about a flexible schedule, fewer hours, or a work-from-home arrangement.
Family Medical Leave Act
The Family and Medical Leave Act (FMLA) allows employees of companies with at least 50 employees to take unpaid leave for medical reasons and to care for certain family (children, spouses, and parents only). Employees have the right to take up to 12 weeks of unpaid leave per year. During the leave, the employee’s health benefits and employment status are protected.
Learn More About Being a Caregiver
The National Cancer Institute and the American Cancer Society have additional resources to help you, including: