What You Need to Know as a Cancer Caregiver

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Legal issues

Job, insurance, and money concerns

How can I be a caregiver and keep my regular job?

Researchers have just begun looking at the financial costs of being a caregiver. Many caregivers already have paying jobs, but we know that caregiving can be a full-time job itself. This can lead to work-related issues like missed days, low productivity, and work interruptions. Some caregivers even need to take unpaid leave, turn down promotions, or lose work benefits. The stress of caring for someone on top of worrying about keeping your job can be overwhelming. Dealing with these issues is important to both the employer and the employee.

There will be times when there will be more demands on the caregiver, for instance, when the patient is being diagnosed, getting cancer treatment, getting treatment for recurrence, or nearing the end of life. The person who is employed may end up taking more time off from their paying job for caregiving.

For people in certain types of jobs (temps, freelancers, consultants, entrepreneurs), this is very difficult. If they don’t work, they don’t get paid. For those with traditional jobs in larger companies, there may be benefits to help you take time off and still keep your job.

Some people find that there’s no one else to care for the cancer patient on a long-term basis, and cut back to working part time. Some feel that they have to quit their jobs entirely. If you need to keep your job but the interruptions and time off are creating problems, you might want to look into a different schedule to fit the times your loved one needs you most. Some companies allow you to take some paid leave if you are caring for a spouse or close relative. You might be able to work half-days or split shifts, or take one day a week off for doctor visits, for example. Or you can look for help during these times when the patient’s needs are greater than usual (see the section, “Asking for help”).

There is a Federal law called the Family and Medical Leave Act that guarantees up to 12 weeks off per year to take care of a seriously ill family member (spouse, parent, or child). It only applies to larger companies, and not every employee qualifies for it. Even though some companies pay you for part of the time, there may be only unpaid leave. But you do get to keep your health insurance benefits. You can find out more from our document called Family and Medical Leave Act (FMLA). Even if you use the FMLA, you still may not be able to arrange enough time off. And if the person you are caring for is not your parent, child, or spouse, the law does not apply to you.

If you don’t qualify for legal job protection, you may still explain your situation and ask your employer if you can adjust your schedule to allow you to give care without leaving your job. Some employers are flexible in these situations. You’ll need to think ahead and be ready to spell out clearly what you can keep doing and how long you think you will need extra time off.

Can the patient keep working?

The patient with cancer often wants to keep working through treatment. In some cases, it’s possible. In others, it doesn’t work well. But 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 – see the previous section). FMLA can be used by the person with a serious illness as well as by the sick person’s caregiver.

Taking leave under FMLA is usually much better for the person with cancer than quitting, because they get to keep their health insurance. If the person with cancer later learns that they must leave their employment permanently, they may be able to use COBRA (Consolidated Omnibus Budget Reconciliation Act) to extend health insurance coverage even further. But COBRA can be very expensive and might not be needed if the new health care marketplace offers affordable health plans to replace the lost insurance. Before making a decision about COBRA, check the health insurance marketplace in your state. If the patient can find a health plan on the marketplace very soon after leaving the job, they can enroll in the new plan right away. You can call 1-800-318-2596 or visit the healthcare.gov website to get to your state marketplace, or call your American Cancer Society at 1-800-227-2345 to find out more.

See our documents called Family and Medical Leave Act and What Is COBRA? for more information.

The patient with cancer may also benefit from the Americans with Disabilities Act (ADA). This Federal law requires employers to make “reasonable accommodations” for an employee with a long-term or permanent disability. Still, the person must be able to do the main job functions in order to qualify for this protection. And it doesn’t apply to every employer. For more information, see our document called Americans With Disabilities Act: Information for People Facing Cancer.

If the patient with cancer had to quit his or her job during or after treatment, and is ready to go back to work, the ADA offers some legal protections against job discrimination.

As a caregiver, how can I keep my health insurance if I quit my job?

When caregivers quit their jobs, they usually lose their health insurance coverage as well as their source of income. But 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. (See our document called What Is COBRA? for more on this.) Like the patient, you should compare health insurance costs on the marketplace before you choose COBRA. (See the section above for details.)

If you look carefully and find that you can’t afford to quit your job and lose your insurance, there are some options that you can look into that may allow you to keep working (see the section above).

What do I need to do with the patient’s health insurance?

Cancer is a very costly illness. Even if the patient has health insurance, it surprises many people to learn how much they have to pay out-of-pocket for cancer care. And the patient is probably going to need help keeping track of it all, figuring out what’s covered and what isn’t, and paying deductibles and co-pays.

You or someone else will probably need to help set up a system for tracking costs, comparing insurance statements, and keeping careful records. Patients will need to stay in touch with their insurance plan in case there are reimbursement problems. The patient may need to give permission to the insurance company to talk about problems and disputes with the person chosen to help with insurance. See our document called Health Insurance and Financial Issues for the Cancer Patient for more on how to deal with this.

How do I deal with all the money issues?

For the person who has lost their income because they had to quit their job to be a full time caregiver, financial problems can become overwhelming very quickly. See our documents called Health Insurance and Financial Issues for the Cancer Patient and Financial Guidance for Cancer Survivors and Their Families: In Treatment for more information on dealing with money issues.

If you are still working, the patient may need extra help – someone to check in on them while you are working. Some caregivers may be able to check in by phone as long as their loved one can do some of their own basic care. Or you can start pulling your family together to find people who can be there or call while you’re at work. If there’s a need for skilled nursing care, the patient may be able to get home health visits through their health insurance. (See our document called Home Care Agencies.)

A few people are able to get paid for time spent caregiving. Some states have Medicaid programs known as Cash and Counseling that can directly pay some caregivers. You can find out whether your state has a program by contacting your local Medicaid office, social services, or health department. Or you can visit cashandcounseling.org online.

Last Medical Review: 03/05/2014
Last Revised: 04/28/2014