Mom has dementia. Do I quit my job to care for her?

The question

An illustrative letter.

The answer

My dear, you are holding up two worlds at once: your mother's, which is growing smaller, and your own, which still has many years to run. Worrying about your future does not make you selfish. It makes you wise. A caregiver who loses her job, her savings and her health is no help to anyone, least of all the mother she loves.

What would quitting at 51 cost me?

More than the paycheck, though that is large enough. Your retirement contributions stop, and so does any match from your employer. Your health insurance ends, and you would need to replace it, through COBRA for a time at full cost, or through the health insurance Marketplace. And Social Security bases your benefit on your highest 35 years of earnings. Years with no earnings count as zeros in that calculation, so leaving work years early can lower the check you will rely on for the rest of your life.

You would not be alone in feeling squeezed. A 2025 report from AARP counted 63 million family caregivers in the United States. A little over a third said they had stopped saving, and nearly a quarter said caregiving had put them in debt.

What can I ask my employer for first?

• Family and Medical Leave. If your employer has 50 or more employees within 75 miles, and you have worked there at least a year and 1,250 hours, the federal FMLA gives you up to 12 weeks of unpaid, job-protected leave a year to care for a parent with a serious health condition. Your health coverage continues, and when it is medically necessary, the leave can be taken in pieces or as a reduced schedule.
• Flexibility. Ask about different hours, remote days or part-time work for a season. Many employers would rather keep an experienced person than replace her.
• Your benefits. Some employers offer eldercare referral services through an employee assistance program. It costs nothing to ask.

Are there programs that pay family caregivers in North Carolina?

There can be. North Carolina Medicaid's CAP/DA program serves adults who would otherwise need nursing home care. Through its consumer-directed option, the person receiving care can hire her own aide, and that aide can be a relative, including an adult child. Your mother would need to qualify for Medicaid, and places in the program can be limited, so ask early.

If your mother is a veteran or the widow of a veteran, ask the VA about benefits that help pay for care at home. And if she ever bought a long-term care insurance policy, read it now: many pay for help at home.

Where can I find help with the caring itself?

Call your local Area Agency on Aging and ask about the Family Caregiver Support Program, which offers respite, counseling and training. North Carolina also has Project CARE, a state-funded program specifically for families caring for someone with dementia, with family consultants who help you plan and, when funds allow, respite vouchers. Adult day programs can give your mother a safe, engaging day while you work.

How do I get my siblings to contribute?

Love sometimes needs a spreadsheet. Before the family meeting, write down what your mother's care actually takes: the hours each week, the cost of an aide for those hours, medicines, groceries and the bills you are already covering. Then ask each sibling for something specific: a monthly amount, a weekend each month so you can rest, or taking over the insurance calls and paperwork. Vague requests get vague answers. A clear list is harder to answer with good wishes alone.

If you do become her paid caregiver, from her own funds or a program, put it in a written personal care agreement that sets out your duties and fair pay. It protects family harmony, and it can matter if Medicaid ever reviews her finances. That pay is taxable income to you. An elder law attorney can draw the agreement up properly.

What papers should be in place now?

While your mother can still understand and sign them, ask an attorney about a durable power of attorney for her finances and a health care power of attorney. Dementia moves in one direction, and these documents become far harder to arrange once she can no longer give consent.

If I do leave work, how do I protect myself?

Keep health coverage at all costs. Keep a foot in work if you possibly can, because even part-time earnings add to your Social Security record and keep your skills fresh. Keep your emergency savings separate from your mother's money. And set a date, perhaps six months out, to look again at whether the arrangement is still working for both of you.

Your mother raised you. Now you are caring for her, and that is a beautiful thing. But she would not want her care to cost you your own old age. Ask for every kind of help before you hand in your notice.

One thing to do this week

Call your Area Agency on Aging about caregiver support and Project CARE, and ask HR whether you qualify for FMLA leave.