No matter what the outcome of the 2016 presidential election is, caregiver advocates will continue to push for greater support and recognition. A recent report called family caregiving a “critical issue of public policy.” This is an exciting and frustrating time for me.
That’s because there are so many issues to address when it comes to improving the lives of caregivers and those who they care for. Caregivers, both professional and family, are starting to make their voices heard. Tired of being taken for granted by family and under appreciated by society, caregivers are seeking recognition through legislation.
In the past, family leave has been mainly focuses on new mothers, but thanks to the work of caregiver advocacy organizations, politicians and corporate leaders are starting to realize that it’s just as difficult to take care of your elderly mother with dementia as it is a newborn daughter while working a full-time job.
Some forward-thinking private companies are offering solutions. Deloitte made headlines in September after they unveiled a revamped family leave policy, which includes eldercare. Employees will be eligible for up to 16 weeks of fully paid leave. According to a survey Deloitte conducted, 88 percent would value their companies expanding family leave policies. Deloitte is not the first company to take eldercare seriously; Fannie Mae is considered a pioneer in the field, offering a robust eldercare benefits program that it began in 1999.
To me, expanding paid leave for those caring for aging relatives is a no-brainer. The current federal program just doesn’t cut it in my personal experience. Some states offer their own programs with varying restrictions, but a consistent federal guideline would help ensure everyone is covered.
The Family Medical Leave Act (FMLA) was a decent step forward in legislation, but the law comes with many caveats that can make it difficult to access. Among the rules: you have to be employed with the same company for at least a year and that company has to have 50-plus employees. It offers a maximum of 12 weeks of unpaid leave annually. The law fails to cover roughly 40 percent of the workforce and while it offers job protection and health insurance coverage, how many people can afford to lose 12 weeks of pay?
I tried using FMLA while my father was hospitalized near the end of his life and found the paperwork to be excessive, at a moment where I had little time to deal with red tape. I was rejected the first time because the government wanted more proof from the ICU doctor that my dad was really in intensive care. My father had already been moved to a different city and hospital by that point and after multiple calls back to the old hospital to try and get the proper form signed and faxed with no success, I gave up the fight. I used up vacation days and took unpaid leave for the rest of the time I missed from work. I also made the decision to return to work sooner than I would have if FMLA had been approved. My father died while I was at work.
In my mother’s case, FMLA was not available to me because I had just started a new job. My mother’s illness came out of the blue, unlike my father’s dementia. After being unwilling to seek new jobs while my father was alive because of his precarious health, I thought I had the green light to move my career forward after his death. That all came to a crashing halt when my mother was diagnosed with stage III colon cancer and required emergency surgery and months of rehab. As an only child with limited family resources, I had to quit my new job to take care of my mother. Even after she recovered, I remained severely “underemployed” for a year before finally securing a full-time job. In spite of rosy jobs statistics, the job market can still be tough, with many jobs being part-time with no benefits.
One thing is for certain: we as caregivers should not feel guilty about asking for support. According to a 2015 AARP study, family caregivers provided $470 billion of unpaid care in a single year. Those 37 billion hours of care didn’t come without a cost to family caregivers. In 2014, over half of family caregivers surveyed said they spent over $5,000 annually, and many of us spent much more than that, especially those caring for those with dementia. Of course, there’s not just a financial cost; caregivers are also at increased risk for stress-related illnesses and depression. Increased caregiver health issues put more strain on the country’s already thinly-stretched health care resources. Supporting caregivers is not a handout, it’s smart public policy that will have a ripple effect across multiple sectors.
Family caregivers should not have to choose between a job and caring for a loved one, or a steady income and saying goodbye to a dying relative. If anyone deserves peace of mind during a difficult time, it’s family caregivers. Knowing that you won’t lose your job, or go bankrupt while tending to a family health crisis should not be reserved for a “fortunate” few, but a standard we strive to deliver to everyone.
If you are a current caregiver who is worried about your financial future and taking good care of your aging parents, don’t despair, as there are many people advocating on your behalf. Now that both of my parents are gone, I have made helping other caregivers a top priority. Changes won’t come overnight, but by staying involved in communities like The Caregiver Space, Caregiver Action Network and the Family Caregiver Alliance, and sharing your story with others, we can help move the conversation forward.
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.