Finally, I can see the light.
I’m slowly but steadily climbing my way out of a mountain of debt that I accrued as a caregiver.
The financial burden of being a caregiver can be devastating, but it is often overlooked. We don’t like to talk about caregiving in dollars and cents, because acts of compassion are priceless, right?
Well, not quite. Doing the right thing morally can destroy you financially.
Caregivers shouldn’t be forced to choose between family duty and financial stability. A new University of Pittsburgh study, “Addressing the Needs of Caregivers at Risk: A New Policy Strategy,” outlines the grim realities caregivers currently face, while offering suggestions for policy improvements. According to the study, family caregivers provide over 90 percent of the long-term care for 12 million Americans, yet lack access to meaningful financial resources and helpful programs like flexible working schedules.
In five years as my parents’ caregiver, I racked up over $20,000 in credit card debt. I burned through my modest savings and drained a Roth IRA before tapping into my parents’ savings. I was a few months away from tapping into my 401K before my financial situation began to improve.
In many respects, I was fortunate.
Initially, the additional expenses I incurred as a long-distance caregiver were manageable. My parents retired to New Mexico and I live in Georgia. After my father was placed in a memory care facility, I paid for what the monthly fee didn’t include, such as adult diapers and nutritional drinks. Even with my father’s Teamsters pension and Social Security, there was not enough to cover the over $4,000 monthly facility payment, so after exhausting dad’s limited savings, my mother was forced to dip into money she had won from a lottery jackpot. After taxes, the amount totaled about $60,000, and over half was spent on my father’s medical care.
Without that windfall, I have no idea how we would have paid for dad’s care. My dad was too much too manage at home, and the condo, which my parents were still paying for, was not suitable for a person with dementia. Like many seniors, my parents’ savings were meager and they lived modestly on their retirement benefits. I could have shouldered some of the financial burden, but it would have stretched my budget thin.
My father died five days before Christmas in 2011. While of course there was mourning, there was also a sense of relief. My father was finally free of Alzheimer’s grip, my mother still had enough money to live on, and I would be able to pay off my modest debt quickly.
Six months after my father died, my mother became ill.
In a stroke of terrible luck, I had just started a new job, which wiped out any opportunity for Family and Medical Leave Act benefits. Even with FMLA, my mother’s slow and bumpy recovery would not have covered the time that I would have required to be away from the job. Don’t assume FMLA is a given; the law comes with many rules and restrictions.
My mother was diagnosed with stage III colon cancer and required emergency surgery. Her recovery was going to require me to be present as her full-time caregiver, so I quit my new job. The job was not structured in a way that would have allowed me to work remotely on my own schedule, so I felt I had no choice but to resign. I had no idea how I was going to take care of her and pay my own bills, but there was little time to dwell on my financial future; I was in pure, raw survival mode.
Like many Americans, I had nowhere near the six months to year of living expenses in savings; I had a few months at best. I take responsibility for that, though I was using any extra money I had to pay off debt accrued over my father’s final year of life.
That summer, I essentially lived on credit cards. My mother was hospitalized an hour and a half away from her home and remained there for two months during her recovery. As my mother’s designated health care agent, I spent many nights in nearby hotel rooms in order to be readily available as medical issues would arise without warning. I also paid for my mother’s medical expenses that Medicare didn’t cover, such as the daily coinsurance for the skilled nursing facility that kicked in after day 20.
My mother returned to her condo in the fall of 2012 and I stayed with her for a few months to help her get situated, scraping together spending money by writing articles. I am fortunate that I have a skill that allows me to work remotely and earn a bit of income and strongly suggest that other caregivers tap into their own skill sets. How much could you earn if you had to move at a moment’s notice and couldn’t maintain a traditional job?
At the beginning of 2013, I was cautiously optimistic. My mother was doing great and I was back home in Atlanta. Surely I would find full-time employment soon, I have always been an excellent employee.
Boy was I wrong.
The brutal job market was for real and there were plenty of talented journalists seeking employment. As the months wore on, my despair grew. I felt guilty using my parents’ savings, and I didn’t want to leave my mother without a nest egg, but I had a mortgage and bills to pay as well. I used as little savings as possible and wrote as many articles as I could to stretch my income. Finally, at the beginning of 2014, I found steady part-time work which a few months later, turned into a full-time gig with benefits.
I began to pay down the debt once again. My mother started to experience abdominal pain in the summer of 2014 which became debilitating over the next several months. Doctors were never able to determine with certainty, but it was assumed that the cancer had returned. I visited more often and made sure my mother had needed supplies shipped directly to her home. I paid for private caregivers to assist my mother with daily tasks as she teetered on the edge of independent living, fearing a nursing home was in her near future.
While emotionally devastating, there was little financial impact this time because my current job allows me to work remotely. That flexibility is huge for a caregiver. I spent the last month of my mother’s life in New Mexico serving as her primary caregiver until she died in May 2015.
I know I was lucky. I was never late on a mortgage payment, though my attempts to refinance due to hardship were rejected. My home didn’t go into foreclosure and I didn’t have to declare bankruptcy. The lights never got turned off and I never went hungry. My 401K, while underfunded, remains untouched. But debt, like grief, lurks like a dark cloud over my life.
The University of Pittsburgh study concluded that the current climate that family caregivers in America face is unsustainable. Family caregivers provide a tremendous resource to this country, providing an estimated value of approximately $500 billion, so caregivers should not feel guilty when accepting government aid. The study suggests options such as tax breaks, grants, insurance benefits and greater access to respite care and flexible work schedules.
The more we share our stories, that caregiving isn’t just some selfless act carried out by angels on earth, but a physically and emotionally draining job with potentially devastating financial consequences, the more awareness will be raised. Legislators need to recognize that aging and caregiving are urgent issues that America must address.
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.