Every night I spend at home, I wake up to the sound of Für Elise by Ludwig van Beethoven. If you asked my dad, who works remotely, he would grimace and tell you he hears it at least 10 times a day. It’s a classic piano piece, don’t get me wrong, but we don’t have a piano, nor are we a family of Beethoven fanatics. My dad probably loved Beethoven a lot more before he programmed my grandmother’s medical alert button to play it instead of a blaring alarm. He definitely didn’t foresee having to interrupt his daily work and home life multiple times a day because a classical tune was calling him to help his mother walk to the bathroom, adjust her position in bed, or feed her snacks and coffee.
My father is a provider and a family man at heart, which is why when his siblings in India talked about moving my grandmother to a home, he insisted she come stay in America. That was almost five years ago, and as her age progresses, life gets harder. Although she is healthy for a 95-year-old, she is hard of hearing, fragile, and can’t walk on her own. Her hospitalizations over the past few years have accumulated a myriad of diagnoses including vertigo, vascular Parkinson’s, and vasovagal syncope. She needs help with everything from sleeping to showering. All this on top of full-time employment. My father’s choice to care for his 95-year-old mother has undoubtedly taken a toll on him, but such is the life of a caregiver. That is not to say that I’m not worried about his well-being or that he doesn’t need or deserve better support, but more so that he has come to accept it because that is who he is.
The remote work trap
Personally, I believe he is stuck in a place where he feels like he can’t ask for more help, and he can’t quit his job because he can’t afford to retire yet. He is stuck at home because my grandmother can’t be left without him for more than 30 minutes, and he is lonely and burnt out. His company has relied on his leadership and technological skills for 20 years, and his work is very much valued despite maintaining his remote status post-COVID.
So, although he can’t afford or justify taking 12 weeks of unpaid leave to support his mother, his team is very understanding of his situation; they tolerate the constant interruptions during important meetings. While the flexibility of his workplace has maintained his productivity enough to keep his job, studies have shown that employed caregivers generally experience productivity loss in their work environments, which can hinder them economically.
Not everyone is as lucky as my father is to be able to stay employed, although I’m sure that doesn’t feel like luck to him. However, his employment doesn’t make up for the time and money that goes into taking care of my grandmother, and despite financial assistance being available, many grant programs aren’t easy to find and apply for without the help of community health departments and caseworkers. Paying for her medicine, diapers, hospital bed, insurance, hospital visits, walkers, wheelchairs, home health aides, and other necessities takes a toll on his financial well-being.
The immigrant health care gap
While Medicaid usually provides compensation for some of this medically necessary equipment and services, she does not qualify for Medicaid yet because she is in a five-year waiting period as a qualified non-citizen (my dad was able to get her green card a few years ago, a process that generally requires translation). He also does not get compensated as a caregiver due to his income; many caregiver support programs are based on a sliding scale for income even if they don’t include income requirements for eligibility. My family lives a well-off life here in America, and my dad rightfully thought she’d live a lot more comfortably here than in India, where health care was suboptimal during the COVID-19 pandemic. And yet ever since she arrived, it has been nothing short of a struggle to provide for her.
My dad’s story is not entirely unique. So many immigrant families found a way to bring their loved ones to a safer place during the pandemic, so I can only imagine how many other people relate to our situation. Caregivers of immigrant elders face a multitude of barriers. However, those barriers are hidden and often overlooked in times of urgency and emotion. Federal policy imposes a five-year waiting period before lawful non-citizen permanent residents can qualify for Medicaid benefits.
My grandmother turns 96 soon, and we are hopeful to say she may even make it to the end of that waiting period. But five years of struggle have put a toll on my father and our family. Working full-time on top of an unpaid caregiver role has increased his stress in ways that have negatively impacted his health in the past three years, as it does for many.
A call for policy change
The systemic and political framework that has exacerbated caregiver burden for my father shows us what needs to change. We should be voting and advocating for policies that expand eligibility for home care coverage, eliminate the five-year bar for immigrant elders with a need for home care service coverage, and formally recognize family caregivers regardless of employment status and income level for financial and medical caregiver support. Community health departments should be developing programs that educate and assist with caregiver resources and immigrant document filing. My father has worked too hard to get to this country and provide for his family only for his efforts and health to be overlooked.
Ranjita Suresh is a medical student.
