Paid Caregiver Leave During Cancer

Cancer treatment runs on someone else's calendar. Surgery is on a Tuesday, the infusion chair is booked for Thursday, and a fever at midnight becomes an emergency visit that eats the next day too. Somebody has to drive, sit, listen, and take notes.

There is a catch. The law that protects a caregiver's job and the money that replaces wages come from two different places. Federal law gives job protection without pay. Pay, if it exists at all, comes from a state program, an employer policy, or a disability plan. Understanding the split saves a lot of wasted phone calls.

This page explains how those pieces fit. It is not legal or benefits advice, and state rules differ, so ask a hospital social worker or your state labor department about your own situation.

The Family and Medical Leave Act covers eligible workers who care for a family member with a serious health condition. It allows up to 12 workweeks of job-protected leave in a 12-month period. Military caregiver leave runs longer, up to 26 workweeks.

The Department of Labor defines the caring part broadly. It includes "assistance with basic medical, hygienic, nutritional, safety, transportation needs, physical care, or psychological comfort." Sitting with someone through an infusion counts. So does driving them there.

Two features matter for cancer schedules. Health insurance continues on the same terms while you are on leave. And leave can be taken in pieces when it is medically needed. That means hour by hour or day by day, not one long block.

Your employer may ask for a certification form signed by the patient's care team. You must be given at least 15 calendar days to return it.

This is where many caregivers get an unwelcome surprise.

FMLA covers a spouse, a parent, and a son or daughter. A parent includes a step or foster parent, or anyone who stood in the place of a parent to you. A son or daughter means a child under 18, or one aged 18 or over who is "incapable of self-care because of a mental or physical disability."

The Department of Labor's list is a closed one. Its definition of parent expressly does not include parents-in-law, and siblings and grandparents do not appear anywhere on it.

Read that again if you are the sister driving your brother to radiation, or the daughter-in-law managing a father-in-law's care. Under federal law alone, that time off is not protected. Some state leave laws reach further and cover siblings, grandparents, or a chosen family member, so check your own state before you assume you have nothing.

Federal law is explicit that FMLA leave is unpaid. The money has to come from somewhere else, and for most people it does not come at all.

A Department of Labor fact sheet reports that as of March 2023, "only 27% of private sector workers in the United States had access to paid family leave through their employer." The gap is worst at the bottom of the pay scale. Among the lowest-wage workers, "95% have no access to paid family leave and 90% lack access to short-term disability leave."

Four places are worth checking, in this order.

• Your own state. Several states and the District of Columbia run paid family and medical leave insurance programs. They are funded by payroll contributions and pay a share of your wages while you care for a relative. The Department of Labor keeps a page tracking these laws.
• Your employer's own paid family leave or paid time off policy, including any donated leave bank where colleagues can give you their unused days.
• A short-term disability policy, which covers the patient rather than the caregiver but takes financial pressure off the household.
• Your union contract, if you have one.

Apply early. State programs usually need medical certification and take weeks to pay out. The first check rarely arrives before the first missed paycheck.

There is a route people rarely hear about. Medicaid allows what it calls self-directed services. Under that model the person receiving care holds "decision-making authority to recruit, hire, train and supervise the individuals who furnish their services." In some programs they also control how the budget is spent.

Whether a relative can be the paid worker depends entirely on your state's rules. It also takes time to set up. Ask the hospital social worker to refer you to your state Medicaid agency or the local area agency on aging. If the patient already qualifies for Medicaid long-term services, it is worth the phone call.

The National Family Caregiver Support Program funds five things through state and local aging agencies. Those are information about services, help getting access to them, counseling and support groups and caregiver training, respite care, and limited supplemental services. Respite care means someone else takes over for a while so you can sleep or work.

Eligibility follows age rules rather than diagnosis. It covers adults caring for someone aged 60 or older. It also covers anyone caring for a person of any age with Alzheimer's disease. Some older relatives caring for children, or for adults aged 18 to 59 with disabilities, qualify as well. The Eldercare Locator connects people to the agency that runs it in their area.

The National Cancer Institute puts the risk plainly: "Many caregivers put their own needs and feelings aside to focus on the person with cancer. This can be hard to maintain for a long time, and it's not good for your health." Fatigue, anxiety, depression, and other mood changes are all described as common.

Treat certain things as urgent rather than as part of the job. Low mood or anxiety that lasts more than two weeks needs a real appointment, not a promise to deal with it later. Chest pain, fainting, or a sudden inability to function needs emergency care the same day. Any thought of harming yourself is an emergency. In the United States, call or text 988. The oncology social worker can arrange counseling for you as well as for the patient. The NCI Contact Center takes calls at 1-800-4-CANCER.

Federal rules are strict about retaliation. Employers "are prohibited from interfering with, restraining, or denying the exercise of, or the attempt to exercise, any FMLA right." They may not treat leave as "a negative factor in an employment action."

One specific practice to watch for is attendance points. Employers cannot apply negative points, or take away positive ones, because you used FMLA leave. If that happens, keep the paperwork and file a complaint with the Wage and Hour Division at 1-866-487-9243.

See also FMLA vs ADA for Cancer, Workplace Accommodations During Cancer Treatment, Childcare During Cancer Treatment, and Financial Assistance for Cancer.

• https://www.dol.gov/agencies/whd/fact-sheets/28f-fmla-qualifying-reasons
• https://www.dol.gov/agencies/whd/fact-sheets/28-fmla
• https://www.dol.gov/agencies/whd/fact-sheets/28a-fmla-employee-protections
• https://www.dol.gov/sites/dolgov/files/WB/paid-leave/PaidLeavefactsheet.pdf
• https://www.dol.gov/agencies/wb/paid-leave/State-Paid-Family-Medical-Leave-Laws
• https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services
• https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
• https://www.cancer.gov/about-cancer/coping/caregiver-support