Most of my earliest memories are moments shared with my paternal grandmother, Grandma Dot. Especially when I was a toddler, my grandmother acted as a third parent. Both of my parents travelled pretty frequently for work, and during that time, my brother and I usually stayed at our grandmother’s gray house with yellow shutters. The house sat at the base of a small hill, but it felt like a mountain back then. We’d take all the sides off Grandma’s red wagon and ride it down the hill over and over, screaming and laughing. My grandmother let us dig through the basement and create inventions out of anything and everything we found. She cut my fluffernutters into quarters. She let us ride on comforters down the flight of stairs that led up to the second floor. We’d sneak downstairs in the morning to scare her, but she never got mad – even though we probably nearly killed her. Once, she even turned her dining room table upside down to make it a pirate ship for us.
Never, in a million years, would I have guessed that I’d lose that woman to dementia. But somewhere in the bustle of my undergraduate career, my grandma forgot little details, started hallucinating, developed paranoia, and raised some major red flags when she forgot how to use her stove on Christmas Day. I remember hearing her muffled tears as she explained to my parents in the other room, “I can’t remember.”
Grandma Dot was diagnosed with Lewy body dementia, the second most common form of progressive dementia behind Alzheimer’s. The next step was finding this long-time independent woman the kind of care to properly support her in this new chapter. Early-on, my aunt tried moving into her home to help, but my grandmother strongly protested. Not long after, my mother orchestrated in-home care, where someone would come to help her exercise and provide a certain level of supervision. My grandmother sent the woman away on her second visit.
My grandmother’s condition deteriorated rapidly over the next few years. And while it’s easy to judge how any family should handle such circumstances, we found out the hard way that it’s extremely difficult to find proper, accessible, and affordable geriatric care. First, taking care of a vulnerable, elderly family member isn’t easy for anyone involved. It’s extremely emotionally taxing, and it’s easy to fall into a pattern of denial.
Second, there’s no road map. Last August, I returned home from a summer abroad in London, and understood that two of my uncles, my grandmother’s oldest sons, had basically moved in and were providing the majority of her personal care. I was asked to spend one day watching her, and realized within the first couple of hours that my grandmother was disappearing before my eyes. While she slept, I wept, staring at her unkempt home, feeling and remembering all of the love and happiness I’d experienced there, thanks to her.
Just days later, she fell. Stubborn as ever, she refused to let anyone help her or take her to the doctor, but it was clear she felt pain. When she arrived at the hospital, we learned she broke her hip. My 93-year-old grandmother went into surgery, and that day, she still seemed so much like herself.
Things moved quickly. She made it through surgery, then, my father, also my grandmother’s youngest son and healthcare proxy, had a lot of decisions to face with the rest of his siblings. Where would she go for rehab? Would she go to a nursing home after that? Assisted living? Back home? With in-home care or back to how things were? How would we pay for all of this? Did she have MediCare or MedicAid – and what was the difference again?
The biggest problem, and the most difficult one to face, was that my grandmother and our family weren’t prepared for any of this. We weren’t prepared for the aging of our fearless, independent matriarch. My mother started taking days off to research facilities and resources the day before my grandmother fell, but now, we had to dramatically accelerate that process. We needed financial documentation and paperwork that would help us understand her health insurance and how to apply for additional resources.
While we were now very behind the ball, I immediately recognized how far back this all began. We all recognized signs of depression and apathy in my grandmother – qualities that were highly uncharacteristic of her personality. As she aged, she valued her self-worth less and less. While I never believed that my grandmother’s value and ability to contribute decreased, she did. And her personal care suffered as a result. Now, I look back and know that she bought into the narrative American society peddles about our elderly – as the elderly age, they are increasingly infantilized, and eventually rendered invisible.
I saw this at each of the facilities my grandmother entered after surgery. A recent graduate, the timing allowed me to visit my grandmother every day, which assured my family there’d always be someone there to advocate for her. At her rehab center, patients’ calls for help were ignored for 15, 20, 25 minutes, while care providers socialized in the cafeteria. When my emotionally wrought family members made inquiries to staff members about my grandmother and her care, they were often met with extremely defensive postures and confusion. While some of the care providers were highly attentive and engaged with my grandmother, those were the exception, not the rule.
I don’t place all of the blame on the care workers. Most of the care providers working hands-on with my grandmother were CNAs (Certified Nursing Assistants), paid $28,382 on average for an extremely challenging range of duties. For reference, a household of one in Massachusetts, with an annual income $23,760 or below, qualifies for SNAP (Supplemental Nutrition Assistance Program) benefits. Given that over 69% of nursing facilities were for-profit as of 2014, CNAs should and could receive higher wages, which would give them the resources and incentives to always reach the same caliber of their most outstanding, selfless peers.
Some might ask why we didn’t just move my grandmother to a different rehab facility when the care appeared largely sub-par. This was the only facility in the area with room for my grandmother. Our top choice had absolutely no available beds and a waitlist.
These decisions and the challenges they bring aren’t unique to my family. In 2014, the CDC reported just 1.7 million licensed beds for elderly care patients – at that time, there were already 1.4 million reported residents. The scope of the crisis in American geriatric care clearly emerges when these numbers are compared with US census estimates that the [already enormous] elderly population will only continue growing in coming years. Already, in 2014, the population of American citizens aged 65+ neared 50 million. While, of course, people are increasingly living longer, and not every person aged 65+ needs geriatric services, 1.7 million beds clearly does not leave us properly prepared to house and care for the number of elderly folks who currently require care or will in the future.
For those fortunate enough to find a decent facility, the next question becomes, how do we pay for this? Most care options and facilities my family researched sat at around $300/day. In-home care prices depend more on the extent of services needed for the patient, but our estimates were still in the $300-$400 daily range. AARP provides a simple tool for preparing folks for the possible costs of care based on region, and offered an accurate estimate for what my family found based on the amount of care and supervision my grandmother required. Thanks in large part to my mother’s history as a care provider, the common, and scary, misconception that health insurance pays for long-term care was quickly debunked. However, my grandmother either didn’t know that, or didn’t want to confront that bitter friend we find in Aging, because she didn’t plan for any long-term care.
According to the US Department of Health and Human Services:
In general, health insurance covers only very limited and specific types of long-term care, and disability policies don’t cover any at all...If they do cover long-term care services, it is typically only for skilled, short-term, medically necessary care.
Custodial and personal care, something many folks in need of long-term care also require, does not receive coverage under most insurance plans. “Medically necessary care” usually gets determined via medical evaluation – one reason why it took time for my family to reach the decision about proper care for my grandmother. Even before her fall, we worked to finish the proper medical evaluations, paperwork, and to obtain her consent (while she could still give it). After the fall and her hip surgery, my grandmother dealt with bouts of acute delirium, which exacerbated her dementia, and rendered her incapable of making her own medical decisions. Therefore, while my family tried to make all decisions democratically, my father became legally responsible for all decisions regarding my grandmother’s healthcare.
Medicare covered the first two weeks of my grandmother’s stay in a nursing home.Then, it was up to us, meaning we had to start using her savings and estate. Too little too late, we realized the importance of estate planning.
Essentially, when we started assessing the cost of long-term care, given that my grandmother had not planned for any long-term care, and none of us knew to help her plan for that, we realized that she could live for years in long-term care when her insurance covered mere weeks. How would we pay for it if her savings ran dry? All of her assets remained in her name, meaning, depending on how long my grandmother remained in long-term care, we could lose her entire estate – something that would devastate her.
In our research, we discovered that we should have shifted her assets to a trust, a process which takes time – time we didn’t have now. It would’ve helped her obtain more aid, something she desperately needed.
However, only a few months into her stay in long-term care, my grandmother contracted C. diff. She was also refusing to eat enough to keep her body nourished. When she entered the hospital to deal with the infection, the medical staff determined that her dementia medication was the root cause of her developing anorexia. By the time she entered a skilled nursing facility, her mind and body were emaciated. The last time I saw her, I fed her cake, one of our all-time-favorite things, while my father, mother, and brother looked on. I didn’t know it’d be our last time together. But, the next morning, December, 23, 2017, we received the call.
In the end, I didn’t want to write this post to spill my intimate final months with my grandmother. I want others to know that avoiding the aging process helps nobody. Don’t wait to help ensure your aging loved ones are protected – don’t avoid planning for their future, and don’t let them avoid it either.
We didn’t do everything right in our journey with the aging Doris Higgins. But she was a teacher and a lifelong learner, and she wouldn’t want us to despair in our failings. She’d want us to use our experience in caring for her to help others realize what’s never taught – what this nation and our society avoids, even – so that others can confidently protect and care for the older, wiser, leaders in their families, inner circles, and communities. She’d take pride in reading these last few words from me, her granddaughter and spitting image: Our elderly are just as precious as our children, our average citizens, and our greatest minds – they are important – they are people – and we must do better for them.