Family caregivers are motivated by love. They donate their time, often sacrificing income to meet the needs of older or disabled family members. They provide free meals and shelter to family members who share their homes. They transport their relatives to doctor’s appointments. They dig into their savings to pay for uninsured healthcare costs, wheelchairs, respite workers, and all the other expenses that accompany the care of aging or infirm family members. They do all of that without compensation, apart from the knowledge that they are improving the life of someone they love.

Caregiving takes a toll. It can be physically and emotionally exhausting. It can test marriages. It nearly always burdens caregivers financially. On average, caregivers spend more than $7,200 of their own money each year to take care of adult relatives. Caregivers are also more likely than other employees to miss work — and lose income — because of family emergencies.

Amy Goyer writes about caregiving for AARP. She recently explained the financial impact of caregiving on her life. Meeting caregiving expenses was financially devastating. It eventually drove her into bankruptcy.

Amy Goyer’s Story 

Ms. Goyer’s mother had a stroke. Years later, her father developed Alzheimer’s disease. Ms. Goyer was fortunate that her parents had long-term care insurance. Premiums can be expensive, but the investment proved to be sound when her parents moved into a continuing-care retirement community. The insurance paid many of the costs associated with their independent living environment, but they incurred out-of-pocket costs for some of their personal care services.

By the time they were in their 80s, most of their savings and investments were gone. They had little equity in their house so they depended on their Social Security benefits and a pension to meet their ongoing needs. Ms. Goyer began to contribute her own income to help her parents meet their expenses.

Ms. Goyer eventually quit her job and became self-employed so she would have more flexibility in caring for her parents. She moved from Virginia to the family home in Arizona to help manage their care. When her parents needed more care than the retirement community could provide, they moved back into the home with Ms. Goyer. She took care of them in the evenings and on weekends. She also provided care for her older sister. Ms. Goyer hired caregivers to assist her while she was at her office or traveling for her work.

Ms. Goyer’s mother died. Her disabled sister died a year later. Her mother’s death resulted in a loss of her Social Security benefits. Ms. Goyer was able to offset some of that loss by helping her father apply for Aid and Attendance benefits from the Veterans Administration. Eligible veterans who served during certain wartime periods can use those benefits to pay for long-term caregiving expenses.

In the last years of her father’s life, Ms. Goyer was devoting all of her free time to caregiving. Still, she spent $90,000 each year for caregivers. She paid the mortgage, purchased her father’s food and incontinence supplies, took responsibility for veterinary bills for her father’s service dog, and paid to make the bathroom accessible for her disabled father.

Ms. Goyer incurred debt to meet those expense. She took out a home equity line of credit. She maxed out her credit cards. After her father died at the age of 94, high interest rates on her debt forced her into bankruptcy.

Lessons Learned

Ms. Goyer doesn’t blame her parents for failing to foresee the expense of long-term caregiving. They made what appeared to be responsible choices by purchasing long-term care insurance and investing in a pension. Few people of ordinary means would be able to cover the expense of dealing with Alzheimer’s and other disabling health conditions when they are no longer able to earn an income. 

While the White House was able to obtain bipartisan support for a spending measure that targets the improvement of the nation’s physical infrastructure, efforts to improve the nation’s social infrastructure have stalled. The White House continues to seek support for a proposal that would increase funding for Medicaid’s home and community-based care (HCBS) program and provide more support to family caregivers. 

The proposal is modest in comparison to the need it addresses. The final contours of that bill, and whether any law that helps caregivers will be enacted, remains uncertain. 

Until more meaningful help for caregivers is available, Ms. Gower offers some important advice for caregivers:

• When you realize that you will need to make financial sacrifices as a caregiver, consult a financial adviser who can help you plan for those expenses.
• Make sure you are aware of a loved one’s resources (such as long-term care insurance and eligibility for veterans’ benefits) so you can access them at the earliest opportunity.
• Work as much as you can to maximize your own Social Security benefits when you retire.
• Do your best and don’t blame yourself for failing to achieve impossible goals.

Other tips for family caregivers are available from Toronto’s Circle of Care and the nonprofit Caregiver Action Network.