You protect your own financial future by treating it as part of the care plan from the first month: keep your money separate from your parent’s, learn what protects your job and benefits before you cut hours, record what you spend, and settle who in the family carries which costs. If you have closed your parent’s patient portal, opened your own banking app and felt the two screens belong to different lives, with prescriptions and rides on one and a skipped retirement contribution on the other, that is an accurate reading of where you stand. It is fair to wonder whether you are even allowed to ask about your own money while your parent is declining.

The stakes sit in the years after. If your own finances wait until later, you can come out of a long dementia journey with fewer working years on your Social Security record, a thinner retirement account and a gap in your work history. Some of what protects you is open now and harder to reach once a job is gone or a document can no longer be signed.

Jessica Lizel Cannon of The Proactive Caregiver is a dementia caregiving strategist, a CPA with 28 years of financial experience and a Certified Dementia Practitioner, and she spent more than 15 years caring for her mother through frontotemporal dementia and four misdiagnoses. She reads the parent’s care costs and the caregiver’s own runway as one set of numbers, because the money for both comes out of the same family.

Estimated reading time: 11 min read

Key Insights

Nearly half of family caregivers have taken a major financial hit, and almost no official process measures it, because every form is about the parent. FMLA protects your job for up to 12 weeks but pays nothing. Years out of work can lower Social Security for life. Paying a parent’s bills from a separate account, with receipts, keeps your money visibly yours, and siblings can carry costs in roles rather than equal shares.

Table of Contents

• What does caregiving cost the caregiver, not only the parent?
• Why does no one at the care meeting ask about your money?
• How do you protect your job and income before you cut back?
• What happens to your retirement during the caregiving years?
• Which money habits protect your household, not just your parent’s case?
• What is fair to ask siblings to carry financially?
• What should you check this month, and what can wait?
• Who can help with your side of the money, and who does what?
• Where does a dementia caregiving strategist fit in your own plan?

What does caregiving cost the caregiver, not only the parent?

More than most families plan for, and most of it never arrives as a bill. AARP’s Caregiving in the US 2025 research counts 63 million family caregivers and reports that nearly half have taken at least one major financial hit, such as taking on debt or stopping saving. Six in ten family caregivers also hold a job, and half of those report work disruptions like arriving late or leaving early.

In AARP’s 2021 cost study, family caregivers spent an average of $7,242 a year of their own money on caregiving, about 26 percent of their income, which is potential savings, retirement money or debt paydown leaving your own household instead. Nearly a quarter of caregivers also say they struggle to look after their own health, and Jessica counts the caregiver’s health as part of the plan on her Self-Care pillar.

Your parent’s care runs on two budgets, and only one of them has a caseworker. Yours needs its own line in the plan:

• Wages lost to cut hours, unpaid leave or a job you leave
• Retirement contributions you stop making, and any employer match that goes with them
• Out-of-pocket spending on supplies, rides, meals and changes to your home
• Your own medical care, which caregivers often postpone

Why does no one at the care meeting ask about your money?

Because the system is built around the applicant, and you are not the applicant. Medicare, Medicaid and a facility’s admissions process all assess your parent’s income, assets and needs. For long-term care, Medicaid in most states looks back five years at your parent’s transfers (California uses 30 months), and no form looks at the years you are about to spend providing the care. That design is not an accident of paperwork. Public programs answer one question, who pays for this person’s care, and the family member doing the work sits outside it.

So the person absorbing the most risk has no file. If your reduced hours, skipped contributions and credit card are funding part of your parent’s care, that is real funding, and it deserves the same records as your parent’s accounts.

How do you protect your job and income before you cut back?

Start with what the law already gives you. The federal Family and Medical Leave Act allows up to 12 workweeks of job-protected leave in a 12-month period to care for a parent with a serious health condition, and your employer must keep your group health coverage going on the same terms while you are out. The leave itself is unpaid, although an employer may let or require you to use paid leave you have already earned at the same time.

Eligibility is narrower than most people expect. You generally need at least 12 months with the employer, at least 1,250 hours of work in the 12 months before the leave starts, and a worksite where the employer has 50 or more employees within 75 miles. The law was written for health events with an end date, and twelve weeks suits a surgery far better than a dementia journey that runs for years, which leaves the rest of the gap to you unless you plan for it.

Some caregivers can be paid for part of the care they give, and the routes vary by state. In Texas, for example, the Consumer Directed Services option lets the person receiving Medicaid services, or their representative, recruit and hire their own attendants, including family, friends or neighbors, subject to each program’s rules. The national options are in Jessica’s guide on how to get paid to care for a family member.

What happens to your retirement during the caregiving years?

It shrinks in two places at once, and only one of them shows up on a statement. The visible one is your workplace plan: every month you contribute less, you also lose any employer match on the money you did not put in, and the growth on both never comes back.

The less visible one is Social Security. Your benefit is calculated from your 35 highest-earning years, and if you claim with fewer than 35 years of earnings, Social Security credits you with no income for each missing year. The formula has no line for care work, so several years out of work, or at part-time pay, can lower your benefit for life. You can check your own earnings record now.

Jessica makes the same point on her Financial Wellness pillar: every year you reduce your work hours, you reduce your Social Security benefits and retirement contributions. Seeing your own projection before you decide how far to cut back turns a decision made under guilt into one made with numbers.

Which money habits protect your household, not just your parent’s case?

The duties the Consumer Financial Protection Bureau describes for an agent under a power of attorney, within what the document and state law allow, protect you as much as your parent. There are four: act only in the person’s best interest, manage their money carefully, keep their money and property separate from yours, and keep good records. Their bills come out of their funds, and if your money is ever used, the receipts are kept.

The durable financial power of attorney, one of the five documents on Jessica’s Financial Wellness pillar, is what lets you pay your parent’s bills from your parent’s accounts at all, and it has to be signed while your parent still has capacity. An agent is not paid for their time unless the power of attorney or state law allows it, and the fee has to be reasonable. A written caregiver agreement is the formal version, and because it must be at fair market value and can affect Medicaid eligibility, an elder law attorney drafts it. On taxes, you may be able to deduct medical expenses you paid for a dependent above 7.5 percent of your adjusted gross income if you itemize, and the Child and Dependent Care Credit can apply when a parent who cannot care for themselves lived with you more than half the year, was your dependent or could have been, and the care let you work.

The receipts point is about your own balance sheet. Groceries, copays and rides paid from your own account without a record are hard to recover and easy for relatives to question later. A separate account and a simple log keep your household’s money visibly yours, and in practice that comes down to three habits:

• A separate account for your parent’s bills
• A log of what you pay from your own pocket, with receipts
• Signing as agent for your parent, never as your parent

What is fair to ask siblings to carry financially?

More than many families ask, and in a different shape than equal shares. In Jessica’s Sacred Assignment framework, each family member has a different assignment, among them the Daily Caregiver, who handles hands-on care, appointments and daily decisions, and the Financial Supporter, who funds paid caregivers, equipment or facility costs. Her rule is to stop expecting identical contributions and to name each assignment out loud, because unnamed expectations are where resentment grows.

That conversation is the moment to put your own costs on the table: the hours you have cut, what you pay out of pocket, and what it would cost to hire the help you provide. A sibling far away may be better placed to fund respite or a paid aide than to show up in person, and figures make the request concrete.

What should you check this month, and what can wait?

Sequencing starts with the window: what becomes harder, or impossible, if it waits.

Who can help with your side of the money, and who does what?

Usually a small team, and each person has a different job.

• Your HR or benefits team handles FMLA, paid leave and flexible schedules.
• Your tax preparer can say whether your parent is your dependent.
• An elder law attorney handles the power of attorney, any caregiver agreement and anything that touches Medicaid.
• Your local Area Agency on Aging points you to programs, respite and benefits counseling.
• Jessica Lizel Cannon connects those pieces to your parent’s care plan and your own runway.

Where does a dementia caregiving strategist fit in your own plan?

Jessica works alongside those professionals. In practice that means one plan in which your income, savings and work sit beside your parent’s care costs and timeline, so the person carrying the plan is in it. Financial wellness is one of the five connected pillars of the Proactive Caregiver Method, alongside dementia care navigation, advocacy, family dynamics and caregiver health, and she works with families nationwide through virtual coaching, with in-person roots in Austin and Central Texas. Sessions are by video.

If you mainly need the frameworks, the Financial Wellness module in Jessica’s self-paced Caregiver’s Trinity Toolbox covers caregiver compliance, long-term planning and caregiver budgeting, including expense tracking, at your own pace. If your situation has moving parts, such as a job decision or a parent whose needs keep changing, ongoing monthly coaching adds a plan built for your family and someone to keep it current. Jessica’s own rule for that first conversation: if coaching isn’t right for you, she will tell you and point you somewhere better. You do not have to solve the next five years this month. You need the few decisions that get harder if they wait, and someone to work through them with you.

Frequently Asked Questions

Q: Is it selfish to think about my own finances while my parent has dementia?

A: No. Your household is part of the family’s risk, because if your income, health or savings give way, your parent’s care loses the person funding and coordinating much of it. Keeping your money separate and your records current is what lets you keep caring for the long haul.

Q: Does FMLA pay me while I care for my parent?

A: No. The Family and Medical Leave Act gives eligible employees up to 12 workweeks of job-protected leave in a 12-month period to care for a parent with a serious health condition, and it requires the employer to continue group health coverage, but the leave is unpaid. Your employer may let or require you to use paid leave you have earned during that time. Some states also run their own paid family leave programs.

Q: Should I keep contributing to my retirement plan while I care for a parent?

A: That depends on your own numbers, so start with what the choice costs. Contributions you stop also stop any employer match, and years with low or no earnings can lower the Social Security benefit calculated from your 35 highest-earning years. Reviewing your earnings record and plan statement first lets you weigh those costs with real numbers.

Q: Can I be paid for caring for my parent?

A: Sometimes. Some state Medicaid programs let a family member be hired as a paid attendant through self-directed options, such as Texas’s Consumer Directed Services, within each program’s rules. A family with its own funds can also use a written caregiver agreement, which must be at fair market value and is drafted by an elder law attorney because it can affect Medicaid eligibility.

Citations

• AARP: New Report Reveals Crisis Point for America’s 63 Million Family Caregivers (2025). Reports on Caregiving in the US 2025: 63 million family caregivers, nearly half with at least one major financial impact such as debt or stopping saving, six in ten employed, and nearly one in four struggling to care for their own health. https://www.aarp.org/press/releases/2025-07-24-new-report-reveals-crisis-point-for-americas-63-million-family-caregivers.html
• AARP: Family Caregivers Face Significant Financial Strain, 2021 Cost Study. Confirms the average annual out-of-pocket spending figure, about 26 percent of caregiver income, and that 78 percent of caregivers face regular out-of-pocket costs. https://www.aarp.org/press/releases/2021-6-29-aarp-research-shows-family-caregivers-face-significant-financial-strain,-spend-on-average-7,242-each-year.html
• U.S. Department of Labor: Fact Sheet #28, The Family and Medical Leave Act. The federal source for FMLA’s 12 workweeks of unpaid, job-protected leave, continued group health coverage, caring for a parent as a qualifying reason, and the eligibility tests. https://www.dol.gov/agencies/whd/fact-sheets/28-fmla
• AARP: How Much Will I Get From Social Security?. Explains that benefits are calculated from your 35 highest-earning years and that years under 35 are credited with no income. https://www.aarp.org/social-security/faq/how-are-benefits-calculated-by-ssa/
• Consumer Financial Protection Bureau: Managing Someone Else’s Money, Help for Agents Under a Power of Attorney. Sets out an agent’s four duties, including keeping the person’s money separate and keeping good records, and says to pay the person’s expenses from their own funds. https://files.consumerfinance.gov/f/documents/cfpb_msem_national_agents_guide.pdf
• IRS: Topic No. 502, Medical and Dental Expenses. Confirms medical expenses paid for yourself, your spouse and your dependents may be deductible above 7.5 percent of adjusted gross income if you itemize. https://www.irs.gov/taxtopics/tc502
• IRS: Topic No. 602, Child and Dependent Care Credit. Confirms a qualifying person can include an adult incapable of self-care who lived with you more than half the year and was, or could have been, your dependent, where the care enables you to work. https://www.irs.gov/taxtopics/tc602
• Texas Health and Human Services: Medicaid for the Elderly and People with Disabilities Handbook, I-2100 Look-Back Policy. Texas worked example of the federal post-2005 rule: the transfer-of-assets look-back period is 60 months from the later of institutionalization or the Medicaid application. https://fhb.hhs.texas.gov/handbooks/medicaid-elderly-people-disabilities-handbook/i-2100-look-back-policy
• California Department of Health Care Services: All County Welfare Directors Letter 25-18 (2025). Confirms the state exception: in California the long-term care Medi-Cal look-back period is 30 months, phased in. https://www.dhcs.ca.gov/services/medi-cal/eligibility/letters/Documents/25-18.pdf
• Texas Health and Human Services: Consumer Directed Services, Employer Option. Texas worked example: under CDS the person or their representative recruits, hires and manages their own attendants, including family, friends or neighbors. https://www.hhs.texas.gov/services/disability/consumer-directed-services/employer-option

Related reading

• How Do I Get Paid to Care for a Family Member?
• 12 Caregiver Burnout Warning Signs You Should Not Wait Out
• How Families Pay for Long-Term Dementia Care: A Complete Guide
• Do I Need an Elder Law Attorney, and What Will It Cost?
• How Do I Get My Sibling to Help With Mom?
• How reactive caregiving can cost families up to $750K, and what proactive planning saves
• Financial Wellness for Family Caregivers
• The Proactive Caregiver Method

About this article. Jessica Cannon is a CPA with 28 years of financial experience and a Certified Dementia Practitioner. She provides financial coaching, not legal or medical services. This article is general information about how these systems work, not advice about your situation, and it is not a substitute for the advice of an attorney. It is not medical advice, and it is not individualized tax or financial advice.

For the legal instruments themselves, including wills, powers of attorney and guardianship, you will need a licensed attorney in your own state. Medicaid and long-term care rules also differ by state and change over time, so any Texas detail here is an example rather than a rule that will apply to you.