Guide
Financial Guide
What to Expect on the Financial Journey Through Family Caregiving
Written by Suzanne Boutilier

After Melanie’s* mother passed away, she moved her 80-year-old dad—in the early stages of Alzheimer’s disease—out of their condo at a lovely but expensive independent living community into her home. Her thinking was that two could live as cheaply as one. And at first they did. But as her dad’s health started to decline, and his care needs started to increase, she realized she had not only taken on a new caregiving role, but also a significant financial responsibility.

This is a common realization for the more than 53 million Americans caring for aging family members. What often starts as a labor of love turns into a financial quagmire. According to AARP, family caregivers spend more than a quarter of their annual income on caregiving costs. And nearly 40% of us eliminate our jobs—and our income—in order to provide our loved ones with the care they need.

Financial stats of family caregivers

When we leave our jobs to become caregivers, income isn’t the only thing we lose. We also lose the benefits that often go along with it. We also stop contributing to Social Security and our 401(k)s. A 2011 MetLife study estimated that women who leave the workforce early to care for a family member lose $142,693 in wages and $131,351 in Social Security benefits. And we often have to tap our own retirement savings to support ourselves and those we’re caring for. So we lose any financial security we may have created for our own retirement.

The bottom line? The sooner we start financial planning, the better. That goes for our older family members and ourselves. For those of us already caring for an older adult, it’s helpful to know what kinds of expenses we’ll likely encounter along our journey so we can budget accordingly.

Many of us at RubyWell are or have been family caregivers. We researched and wrote this eBook to help relieve some of the financial strain on others at various stops along the caregiving journey.

*Name changed to protect privacy.

The 5 Phases of the Financial Journey Through Family Caregiving

From the moment we run our first errands for an aging parent or first accompany them to a doctor’s appointment to the day we wrap up the last of their legal and financial affairs after they’ve passed, family caregivers are navigating unfamiliar territory with unexpected tolls. Let’s first take a look at the five phases of this journey. Then, we’ll plot out what expenses are likely to crop up in each one and what can be done to minimize or prepare for them.

Five phases of the financial journey for family caregivers

1. Oh! I’m a caregiver! - The early days

Some of us are thrust into the role of family caregiver suddenly after a health crisis or hospitalization. A parent falls and breaks a hip. A grandparent has a stroke that leaves them partially paralyzed. A spouse is diagnosed with a debilitating disease. Others gradually realize that the dinners we’ve been bringing over every weekend, the fix-its we’ve taken on, and the money management we provide each month have made us a caregiver. In this phase, there can be a broad range of financial questions—many of which we don’t even know we should be asking. Whether money is starting to drip out of our bank account or gush like a fire hose, the sooner we understand where it’s coming from and where it’s going, the better.

2. In the trenches - The daily challenges of providing care

Our family member’s care needs will evolve constantly as they age. And so will our care responsibilities. But at some point, the panic of being a new family caregiver gives way to the acceptance that this is how life is going to be for the next several weeks or months or years. We create routines and budgets. We reorganize the time we devote to the rest of our family, our friends, our jobs, and ourselves in order to provide needed care. Medical expenses are likely climbing, and their savings are likely dwindling. If they have a long-term care insurance policy (LTCI), this may be when they choose to start claiming the benefit. If they don’t have LTCI, this may be when we leave work to care for them or look into accessing government benefits through Medicaid or the VA.

3. End of life - The transition out of caregiving

End of life care can bring with it increased care responsibilities, additional medical equipment, supplies, care providers, and new financial considerations. All of this amidst the emotional intensity of saying goodbye to someone we love. Again, this is new terrain for most of us. And we don’t know what we don’t know. Clear expectations can help us plan for and navigate this phase of our caregiving journey.

4. Post-caregiving - Tying up financial affairs after death

After the person we’ve been caring for dies, there’s still “financial caregiving” that may land on our plate. Particularly if we’re also our family member’s power of attorney and/or executor of their will. Getting their finances in order may also impact our finances.

5. Retirement Reset - Planning For Our Future Care

Our loved one’s affairs are in order. We’re working through the grieving process. And we may be able to return to our careers, or at least paid work of some kind. If we’re lucky, we have time to rebuild our savings in time for our own retirement. But some of us need to dig out of debt first. And some are already at retirement age with little or no savings left. While this is the fifth phase of the family caregiver journey, we should really start focusing on it at the beginning of our journey.

Successful Journeys Start with a Map

The financial journey through caregiving is unique for every family caregiver. But tens of millions of us are bearing some or all of the costs of caregiving. Understanding the five phases of our journey—and the financial responsibilities we may encounter in each phase—can help us find the support we need, when we need it. It also helps us prepare for our own care during our later years.

We can use the information below as a map to help us navigate our caregiving journey. There’s a lot here to absorb all at once. So it’s fine to focus on the one section that relates to the phase of the journey we’re currently on or about to enter. 

The one exception would be Phase 5: Retirement Reset - Planning for Our Future Care. We can start using the information in there now. Getting our own care—and financial—planning sorted is an important form of self-care that will help ease our mental load now and our family’s financial load in years to come.

Continue reading:

Phase 1: Oh! I’m a caregiver! - The early days
Phase 2: In the trenches - The daily challenges of providing care
Phase 3: End of life - The transition out of caregiving
Phase 4: Post-caregiving - Tying up financial affairs after death
Phase 5: Retirement Reset - Planning For Our Future Care

Review:Introduction

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Phase 1: Oh! I’m a caregiver! - The early days
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Written by Suzanne Boutilier
Suzanne Boutilier has been working and writing in the caregiving space since 2021. She also helps her sisters care for their aging father.
Reviewed by Elyse Dasko
Elyse Dasko is a leading communications strategist in age tech, caregiving and the longevity market.