Becoming Your Parent's Caregiver: Role Reversals

This page is for adult children caring for a parent with advanced cancer. It covers what the job involves, who makes decisions, family tensions, where to get help, and when to call for urgent care.

Taking over the care of a parent with advanced cancer is usually called role reversal. The phrase is only half right. The tasks do reverse. You start scheduling the appointments, sorting the pills, driving, lifting and calling the insurer. Eventually you help with bathing and the bathroom. What does not reverse is authority. Your parent remains an adult who decides about their own medical care. That holds no matter how much of the physical work has moved to you. Most of the friction inside this arrangement comes from those two things being confused, by you, by siblings, or by your parent.

Family caregiving in advanced cancer is several jobs at once.

There is medical work: medication schedules, injections, wound or ostomy care, and tracking symptoms accurately enough to report them.

There is administrative work: prior authorizations, appointment logistics, pharmacy calls and bills.

There is physical work: transfers, repositioning, and helping someone to the toilet at three in the morning.

And there is personal care, which is the part almost nobody is prepared for. Helping a parent bathe, or managing incontinence, crosses a line that many adult children and many parents find genuinely difficult. That difficulty is common, and it is not squeamishness. Medicare says hospice covers home health aides. Aides can also be hired privately. Assigning intimate care to a paid aide is a legitimate choice. It often preserves the part of the relationship you still have.

Equipment changes what is possible at home. A hospital bed, bedside commode, shower chair, transfer belt and wheelchair reduce injury to both of you. Before hospice, Medicare Part B covers medically necessary equipment such as hospital beds, commode chairs and wheelchairs when a provider orders it. Medicare says hospice covers medical equipment. Ask your team about a home safety visit early, rather than after a fall.

Find out now whether your parent has an advance directive. NCI describes these as legal papers that tell loved ones and doctors what to do if the person cannot speak for themselves. Ask while it is a calm question rather than an emergency one. Your parent decides about their own care, including choices you disagree with. If you are unsure what your parent wants, ask the care team or hospital social worker to help start that talk.

Families under strain tend to revert to the roles they held decades ago. One adult child becomes the responsible one. Another keeps their distance. Both resent it. Parents sometimes tell different children different things about how they are actually doing, which leaves siblings arguing from different facts. Say this out loud, once, in plain terms. That takes some of its force away. So does a short family meeting with a set agenda:

• current medical facts from the team
• what care is needed each week
• who is doing which part

Ask the care team about palliative care and a social worker. NCI says social workers, counselors and support groups can help caregivers, and that adult day care and meal delivery can give relief. Medicare says hospice, when the time comes, covers home health aides, medical equipment, medicines for symptoms and pain, 24-hour support, and short respite stays for caregivers.

Caregiving is tiring, and mixed feelings are common. NCI says that if you do not take care of yourself, you will not be able to care for others. It suggests rest, short naps, and talking with a counselor or support group. Talking openly with family members who are not helping can keep resentment from building. Use the help above earlier than feels necessary.

• Call 911 or go to an emergency department if your parent falls and hits their head, is bleeding heavily, cannot be roused, or cannot move an arm or a leg afterwards. Do not try to lift them off the floor by yourself. Do not drive yourself.
• Call 911 or go to an emergency department if your parent becomes confused about the date or the place over a matter of hours, or shifts between agitation and heavy drowsiness through the day.. Do not drive yourself. If your parent is on hospice, call the hospice 24-hour line first; they will tell you whether 911 is right.
• Call your care team the same day if the prescribed doses stop controlling pain, or your parent cannot keep medicines down.
• Call your care team within a day or two if a transfer, a bath or a trip to the toilet has started to feel unsafe for either of you, or you have hurt your own back doing it. Ask for the equipment and the aide hours now, rather than after an injury.
• Tell the team about any fall, even one that seemed harmless. A fall can be the first sign of a medicine problem that can be corrected.

• NCI: Making Future Plans with Advanced Cancer
• NCI: Caregiver Support
• Medicare.gov: Hospice care
• Medicare.gov: Durable medical equipment coverage
• MedlinePlus: Head Injury, First Aid