Young-Adult Cancer Caregivers

Most caregiver advice assumes a 55-year-old with twenty years at one employer and grown children. If you are 22 and your mother just started chemotherapy, almost none of it fits. The rules themselves were written for the other person.

Here is what actually applies to you, and where you are likely to fall through.

The Family and Medical Leave Act gives "up to 12 workweeks of leave in a 12-month period." It is "job-protected, unpaid leave." Your employer "must continue group health insurance coverage" while you are out, on the same terms.

You only get it if all three of these are true:

• You "work for a covered employer for at least 12 months."
• You have "at least 1,250 hours of service with the employer during the 12 months before" the leave starts.
• You "work at a location where the employer has at least 50 employees within 75 miles."

1,250 hours is about 24 hours a week for a full year. A job you started eight months ago fails the first test. A part-time job fails the second. A small shop or a startup fails the third. Young adults fail these more often than anyone else.

Then there is who counts as family. The Department of Labor allows leave for a "child, spouse, or parent." Parent covers "a biological, adoptive, step or foster parent." It also covers anyone who "stood in loco parentis to the employee when the employee was a child," meaning a person who raised you without being your legal parent. The term "does not include parents 'in law.'"

Read that twice if you are caring for a grandparent or a sibling. They are not covered.

If you fail the tests, ask anyway. Ask about your employer's own leave policy, unpaid personal leave, shift swaps, or a temporary schedule change. Ask in writing, and keep the reply.

Respite is paid relief covering a few hours or days. The largest public source is the National Family Caregiver Support Program, run through the Administration for Community Living.

Its eligibility runs on age, and this is where young adults get stuck. It covers adult family members caring for someone 60 or older. A person of any age with Alzheimer's disease also qualifies. So does a relative 55 or older who raises children or cares for an adult 18 to 59 with a disability.

If your parent is 54 and has cancer, none of those lines fit you. Call the Eldercare Locator anyway at 800-677-1116, weekdays 9 a.m. to 8 p.m. Eastern. States add their own programs. Then ask the cancer center's social worker about grants, transport, and lodging. Those are not age-restricted.

You can stay on a parent's plan until 26. Healthcare.gov says that holds even if you "got married," "have or adopt a child," "start or leave school," "live in or out of your parent's home," "aren't claimed as a tax dependent," or "turn down an offer of job-based coverage."

Two catches. On a Marketplace plan you stay "through December 31 of the year you turn 26." And if the coverage is your parent's job-based plan, it can end when their job does. Ask now what happens to your coverage if their employment changes during treatment.

NCI's list of caregiver tasks is worth reading out loud. Most young adults are doing several of these without ever calling it caregiving:

• "helping with day-to-day activities such as doctor visits or preparing food"
• "giving medicines or helping with physical therapy or other clinical tasks"
• "helping with tasks of daily living such as using the bathroom or bathing"
• "coordinating care and services from a distance by phone or email"
• "giving emotional and spiritual support"

The third one is the hardest for an adult child. Bathing a parent is a real clinical task with a real emotional cost. Ask whether a home health aide can be ordered for it instead. That request is normal. It is not abandonment.

CDC's national survey found that "44.8% of unpaid caregivers were aged <45 years." Caregiving is not mostly an older person's job. The same survey found "19.2% of caregivers reported being in fair or poor health."

Among caregivers 45 and older, CDC reports that "one in three caregivers (31.3%), provided 20 or more hours per week of care." Over half, "53.8%, have given care or assistance for 24 months or more." And "14.5% of caregivers reported experiencing 14 or more mentally unhealthy days in the past month."

Twenty hours a week for two years, layered on school or a new job. Plan around that, not around a few hard months.

The American Cancer Society describes what makes the young adult version different. Caregivers aged 18 to 39 "might be finishing school, finding their independence, starting their careers, getting married, and having children" at the same time. It names the costs as "money, interrupted plans, isolation, and a deep sense of role reversal." It also names "social isolation from being left out when friends are living very different lives."

NCI tells caregivers plainly: "If you don't take care of yourself, you won't be able to take care of others." It advises taking "at least 15-30 minutes each day to do something for yourself." It also gives a threshold worth holding onto. Watch for low mood that lasts more than two weeks, and get it looked at.

• Low mood, hopelessness, or loss of interest has lasted more than two weeks.
• You have stopped going to your own doctor, dentist, or therapy.
• You dropped classes or shifts with no plan for money or insurance.
• You are drinking or using more than you were three months ago.
• You are the only one doing this, with no backup for a single sick day.
• You are thinking about suicide or self-harm. Call or text 988 now.

• Which of my tasks could a home health aide or nurse do instead?
• Can the social worker check what I qualify for, given my age and my parent's age?
• Who is the one team member I can call or email between visits?
• If I go back to school or work, what is the backup on treatment days?
• What happens to my health coverage if my parent's job ends?

You are allowed to keep your own life. A caregiver who quits everything at 22 becomes the next problem the family has to solve.

• FMLA Fact Sheet 28 — US Department of Labor
• FMLA Qualifying Reasons, Fact Sheet 28F — US Department of Labor
• Support for Caregivers of Cancer Patients — National Cancer Institute
• Health Coverage for Children Under 26 — HealthCare.gov
• Characteristics and Health Status of Informal Unpaid Caregivers, MMWR — CDC
• Caregiving for Family and Friends: A Public Health Issue — CDC
• National Family Caregiver Support Program — ACL
• Suspected Abuse, Neglect, or Exploitation — ACL
• Coping Strategies for Younger Adults Caring for a Parent with Cancer — American Cancer Society