It has been 13 years since I graduated with a political science degree from The American University, and I am excited to be going back to Washington, DC! Well, not technically, so bear with me.
As a thyroid cancer survivor and a caregiver, I am passtionate about patient advocacy. I’ve shared my story on my blog, participated in awareness month efforts, been interviewed by numerous media outlets, and had my survivor story published as a chapter in the book TOUGH: Women Who Survived Cancer. But now, as a caregiver, my advocacy experience is tested daily and has been taken to a new level. I am no longer advocating for myself and my needs but for a whole other person who depends on me to make life-and-death decisions. Almost every day, I face questions about long-term care, finances, and various end-of-life decisions that I often do not feel qualified to make. I’m doing this while working a full-time job, too. And, my health? Funny you ask. I recently went for a biopsy and am awaiting the results as I write this post. Aside from that, I’m behind on most of my regularly scheduled doctor’s visits because I lack the time and energy to make it to them. And, eating? My dinners usually consist of what I can pick up on my way home from feeding my grandmother hers.
Although I’ve been a millennial caregiver for more than a decade, caring for someone who can no longer care for themselves is what I like to call ‘Caregiving 2.0.’ It is a different level of caregiving that means you are constantly on-call (I haven’t put my phone on silent mode in almost a year). As I’ve come to terms with my new normal, I’ve wondered how other caregivers balance it all, and stay sane.
According to the Difference Collaborative, 25 percent of caregivers are millennials, and a whopping 70 percent of full-time workers are impacted by caregiving. And AARP reports that the number of Americans providing unpaid care has increased in the last five years, 23 percent of Americans report that their health has gotten worse as a result of caregiving, and 45 percent have had at least one financial impact.
What does this all mean? As one of the largest generations in this country prepares to live longer and will likely need more services, who will take care of them? Nursing homes are short-staffed, and many agencies are facing a shortage of aids to care for people aging at home. This means that family members will have to care for their aging loved ones on their own. And it’s not an easy undertaking, especially for those in the sandwich generation who will wind up caring for their parents and also their own children simultaneously. It was a major reason why I co-founded The Hospital Bar and wanted to lead the conversations that many people need to be having about elder care and caregiving, and sooner than they think they need to start them.
In becoming a caregiver, I realized something else. Things need to change drastically for the approximately 53 million people who are already caregivers in the United States. According to Where You Live Matters, nearly 40 million Americans provide unpaid care and spend an average of 24.4 hours a week providing that care. I should know because I am one of them. It shouldn’t be that you need to give up your livelihood or go bankrupt to provide care for your loved one. But in many cases, that is what it comes to. As a country facing shortages in healthcare already, who will take care of the caregivers when they get sick?
So, what does this have to do with me returning to Washington? I was recently accepted into the Patients Rising Advocacy Masterclass as part of their fall cohort. Patients Rising is a 501c(3) organization that provides education, resources, and advocacy for people living with chronic and life-threatening illnesses. They also help patients and caregivers on their journey to advocate for themselves or a loved one. For the next 15 weeks, I will be learning how to use my story as a caregiver to enact real change through lessons on healthcare advocacy, value-based care, and all while getting a glimpse of what advocacy on “the Hill” looks like. I am eager to put my political science degree to good use and enlivened by the opportunity to improve the lives of millions of current and future caregivers.