Patient advocate: When caregiving becomes a full-time job

Family caregivers are the backbone of our long-term care system, usually working without compensation and keeping many family members out of facilities. A recent study by AARP found that 63 million Americans consider themselves caregivers, a 50% increase since 2015.

Some people become caregivers all of a sudden, after an unexpected illness or accident. For others, it’s a gradual taking on of more and more responsibilities, until you find yourself with a full-time job, perhaps in addition to a day job. It’s what experts are calling “caregiver creep.”

And it can be an open-ended responsibility, especially when caring for an elder or a spouse with physical or cognitive decline. Some people even make room in their homes for a family member, or move across the country to be nearer, which can cause family turmoil and financial stress.

How does caregiver creep start?

It’s not uncommon for adult children to run errands for their parents, accompany them to the grocery store and take them to doctor’s appointments — especially when elderly parents have to give up driving. These are tasks that you can generally fit around other responsibilities. You can pay someone to do these things, but many families don’t have the resources for that.

When doctor’s appointments increase in frequency or when you notice that your parent isn’t able to perform their ADLs (activities of daily living, such as preparing food and bathing), the demand for caregiving kicks into a higher gear. You find yourself stopping in every day or two, bringing groceries, doing laundry and cleaning. If you’re lucky, there are siblings who can help.

Then there may come a time that you feel your parent needs eyes on them 24/7, such as when a diagnosis of dementia is made. Maybe the parent moves in with you. Some caregivers find themselves caring for a spouse and a parent at the same time, draining their energy, well-being and pocketbooks. A growing body of research has shown that caregivers contemplate suicide at higher-than-average rates, according to a 2025 study.

As a patient advocate, I’ve observed caregivers in many types of situations, and occasionally I’ve stepped in if I suspected the caregiver may be mistreating or even abusing the person they are caring for.

I think it’s important, in a caregiving situation, to have self-awareness of our circumstances and recognize when it’s becoming too much. That said, it may be hard for us to acknowledge our limitations because, after all, we’re caring for a parent who cared for us or a spouse we love.

I’ve known so many caregivers whose automatic response to offers of help is, “Nope, I’ve got this,” even if they don’t “got this.” There are things you can do to manage caregiver creep, and one of the main ones is to ask for, and accept, help.

I read in a recent article how a woman caring for her husband made a list of tasks that could be done in 10 minutes, an hour or two, half a day or overnight. Then, if someone said, “Let me know what I can do,” she could say, “You can stay with my husband while I go to the gym for an hour.” Brilliant.

Your list may include things like helping organize medical information, making doctor appointments, researching care facilities, grocery shopping, even doing laundry or bringing over dinner.

Though it doesn’t alleviate all the concerns of caregiving, recognizing caregiver creep and taking action to lessen its effects may help you maintain your physical, mental and emotional well-being.

• Teri (Dreher) Frykenberg, R.N., a registered nurse and board-certified patient advocate, is the founder of NurseAdvocateEntrepreneur.com, which trains medical professionals to become successful private patient advocates. She is the author of “How to Be a Healthcare Advocate for Yourself & Your Loved Ones” and “Advocating Well: Strategies for Finding Strength and Understanding in Health Care,” available at Amazon.com. Contact her at Teri@NurseAdvocateEntrepreneur.com to set up a free phone consultation.