Abstract
My happy place could be any number of homes I’ve been fortunate enough to call so over the years, from my home in Queens, NY, where I was raised, to my childhood “summer home,” where I would spend 6 to 8 weeks in Puerto Rico with my Abuelo and my Tata, to the spring vacations I would spend with my paternal grandparents in Jamaica. There’s no question I was a very fortunate little girl to call so many beautiful places home. Summers in Puerto Rico were incredibly special. It was time for my grandparents and I and our extended family there to get together. My favorite days weren’t the days when we’d all climb into 2 or 3 cars and go to a water park, the beach, or even the mall for our excursions. The best days were always spent with just the 3 of us in the enclosed balcony where I could catch a cooling breeze while playing dominoes or cards with both of them. Tata was an absolute riot to play with because she had NO poker face whatsoever. Anytime we played Old Maid, her eye rolls, sucking teeth and not-so-subtle cuss’ under her breath let us all know exactly who had the old lady—but don’t you dare laugh unless you’re ready to catch hands and a whole lotta lip to go with it!
That’s how I like to remember my Tata—the feisty little Latin woman who never took anybody’s mess, no matter how crippled she was by circumstance, age, or her multitude of chronic conditions and comorbidities. I do mean quite literally my Tata has always had a laundry list of health issues—diabetes, high blood pressure, high cholesterol, heart disease, inflammatory bowel disease, osteo-rheumatoid arthritis—you name it, she either had it herself or it ran in the family. Still, for all the aches and pains, the days where she couldn’t get out of bed, she still fought on and took care of her family, cooking every single meal—for her own and anyone who might just “pop by” unannounced—while also insisting on doing all of the cleaning HER way as well. I guess the spark started to dim after my abuelo passed away. Perhaps her strength artificially came from her own caregiving role when abuelo 6 months prior seemingly had an undiagnosed cardiac event that left him with sudden onset severe dementia before he passed. When the care of her husband was no longer needed, and her body could finally catch rest, it started to break down. The plan was always to bring her to live with us after he died, and we did within 3 months of his passing in early 2012. But we would soon realize how much her care needs would dramatically shift shortly thereafter.
For the next six and a half years, Tata lived with my mother and I in New York. My caregiving journey began at just 22 years old, just shy of a year after graduating from college. Unfortunately, after years and years of trying to get her qualified for Medicaid so we could finally receive dignified in-home care by professional aides, during my last semester of my Master’s degree in 2017, she had a terrible fall that started the path from long-term hospitalization to institutionalization—full-time nursing home resident. We honestly didn’t have many options. During the time that my grandmother’s condition appeared to worsen during her rehabilitative stay, my own mother had a stroke at the age of 49, just months’ after Tata’s fall. Ironically, at one point they were both staying at the same facility, and I was visiting different floors every day. My mom thankfully doesn’t have any debilitating long-term side effects from her stroke, but I will say circumstances have definitely changed. I can tell she needs more and more help to keep up with day-to-day home maintenance and even self-care. So imagine now at 27 years old, just about to start post-graduate life, trying to figure out how I/we could possibly continue to keep both of them at home when my grandmother’s condition was deteriorating faster than I could ever afford around the clock care and I had no idea what would come of my mother’s prognosis. The reason why that was a challenge we had to figure out was because, at the time, Medicaid would not cover 24 hour in-home care—but they did cover institutionalization. Given the choices in front of us and what our experience had been with the facility she was staying at up until that point, it seemed like the best possible scenario for an otherwise deeply dreaded outcome. But it certainly felt like a personal failing on our part—after all it is totally against our cultural values to allow our elderly to age and die anywhere but home. I wanted the same dignity for her that abuelo had, life just didn’t play out that way and the infrastructure wasn’t in place to make that possible for us. At least as far as the short-term rehabilitation was concerned, it was an overall top of the line facility; their nursing home “section” also appeared to be well managed. And, because it was just 10 minutes away from my house, we could get to her whenever we wanted. Maybe it wouldn’t be too bad, maybe it would work out for all of us—except, it really didn’t.
Let’s start with how much Tata absolutely hated the food, and honestly still does. And, as so many caregivers can likely attest, she sure made it difficult to be able to go any amount of time not seeing her given she wouldn’t eat what they were giving her at all—that is while she had the willpower to fight it. Then there was the issue of her deteriorating mobility; my home had stairs which were difficult to manage especially with Tata’s arthritis but forced her to maintain some degree of agility in her joints. In spite of several stints of physical therapy, her arthritis worsened and her desire or will to maintain her agility deteriorated. She didn’t know anybody there, almost no one spoke Spanish fluently, and she missed home. Then there was the question of how often her diapers were being changed and even how well her medical history was being evaluated and tracked in relation to any new combination of medications being administered. My mom and I thought that as legal guardians, health care proxies, and power of attorney’s, we’d have more say in the outcome of her medical treatments, but honestly, we had to fiercely advocate for ourselves and for her repeatedly given a combination of the limited coverage options through Medicaid and the insufficient staffing at the facility to handle the sheer volume of high needs patients that required constant medical attention. Again, I have to stress that this is one of the “better” facilities in the entire region, especially of those that accepted Medicare/Medicaid coverage alone—we felt utterly backed into a corner. Still, our intention was never to abandon her. So we over extended ourselves repeatedly committing to visiting her every single weekend in the nursing home and sometimes, even trying to sneak in visits during the week. We called as often as we could, bringing her food and gossip rags, and doing her laundry, everything we could to keep eyes on the situation and make sure she knew she was never forgotten. During this same period, I received the opportunity of a lifetime to work at an Ivy League University not too far away. But the position required me to relocate. Given the relative stability of the situation at home with my mother’s recovery from her stroke and my grandmother “safely” in a nursing home combined with the relative proximity to home, I accepted. In my mind, I could always be back home within a few hours and I planned to visit home almost every other weekend during this period. All of us decided it was worth the risk. Since this was for my professional future, for our collective economic stability over the long term, it would be worth it. Just put in at least 3 to 5 years and then make a decision about where to move the family if this was a long-term fit. And then COVID-19 happened…
Like so many other families who lived through the experience of loved ones being in nursing homes during this period of extraordinary turbulence, worry, and isolation, 2020 was hands down one of the worst years of my life. The nonstop news coverage of nursing home deaths and the subsequent revelations around under reporting of deaths left our heads spinning, our hearts aching, absolutely helpless to do anything to protect her. It was impossible to even stay abreast of what was going on in her medical care because the facility was chronically understaffed by what my mom and I have come to call their “A team,” the most caring, understanding and attentive nurses or Patient Care Assistants (PCAs). One could also say they were overstaffed with the “D team”—folks who seemingly couldn’t be bothered or were clearly overworked to death, war torn from watching their colleagues pass away from a horrific disease that had become an occupational hazard while performing the greatest act of service—looking after the most feeble Americans in lieu of their loved ones at a moment of national crises. Still, I’m sure it cannot be easy to enthusiastically perform this service in a low-paying position that requires you to manage an absurd amount of caseloads in any given shift while also constantly exposing yourself and your loved ones to scourge; heaven knows it cost many of them their lives or the lives of those they love, those they care give for at home.
Reduced to FaceTime or the occasional window visits, we carefully tiptoed around special requests for updates and refrained from asking too many questions so as not to anger administrators who reserve the right as a facility to discharge any patient whose individual behavior or that of their family members is deemed hostile. That is until she caught COVID in early 2021—AFTER we were told she had already received the vaccine without the subsequent follow-up which clarified patients with food allergies, which she has, were not being included in the initial rounds of vaccine administration. Without getting into explicit details, let’s just say we were highly displeased with the attention paid or level of care given by senior members of her care team, including our assigned social worker, especially considering the callous disregard of their own culpability in this outcome. Though she was treated with monoclonal antibodies and ultimately recovered from COVID, thank God, her overall physical condition ultimately deteriorated to where she was recommended for hospice based on her kidney function. As a condition of her hospice admissions, she was finally entitled to one scheduled 30 minute family visit per week where my mother and I promptly discovered the level of neglect she had experienced in our absence, what the outcome had become without our ability to keep careful eyes on her care and ensure we were holding staff accountable.
If any revelations have come out of this horrific national experience, it’s that caregiving, and a lack of an adequate care infrastructure has come at an unacceptably high cost to the nation—a crippled economy and hordes of women by the millions forced to withdraw from the workforce. Worst yet, it has cost our most vulnerable citizens their lives at rates disproportionately impacting low-income neighborhoods and communities of color. Families are desperate to find ways to stay together because an unimaginable crisis made one fact abundantly clear—our aging loved ones belong at home where they can be under our watch receiving the standard of care only fitting for those who mean the world to us. In order to facilitate the growing demands for in-home aid, we need policies that support our needs INCLUDING the ability to receive 24 hour in-home care as an alternative to an institutionalization model that is too costly yet still underfunded and wholly insufficient. President Biden’s recognition of caregiving as a key funding priority in his infrastructure plan was probably the first time in my adult life that I felt seen and heard as a caregiver. $400 billion for expanding home and community-based services through Medicaid is a huge step towards allowing families, especially women who continue to lead in providing care in their homes, the peace of mind to know that they can keep their loved ones at home while also receiving the professional care services required so that we can continue to be the providers and earners we have always been. What’s more, passing the “Home and Community Based Services Access Act (HAA)” would ensure that expanding these services would be fully funded and mandatory across all 50 states. That would mean we are giving all caregiving Americans and their loved ones the option of dignified quality home care they need and deserve to support an evolving work force that needs this support. If anything like this had been feasible for my family back in 2017 when I was facing absolutely impossible choices under the starkest of circumstances, I can guarantee you we would have taken it. Facing the cruel reality that global pandemics are plausible, that you could be totally removed from caring for your loved ones for months on end, that they could die without even being in the comfort of their own home or in the company of those they love most—should be enough to shake all of us awake and demand a better path forward.