My uncle told me once that I would remember this time as “before” and “after” and that the course of my life would be greatly changed as a result of it. He said it would be like generations before us during times of war. My uncle was a wise and humble man, the keeper of family stories. He was part of the “before” and then he died, and many of those stories died with him.
My uncle was my mother’s brother. My mother died in 2020 and my father, shortly after, in 2021, casualties of two of the most punishing years I think the world has ever known. They certainly were for us, embroiled as we were in the unrelenting disease of Alzheimer’s that had befallen both my parents.
I lost my uncle, and both parents – all the elders in my family -- within the span of about eighteen months, during the COVID pandemic lockdown. They died, as did many elderly, from what we did to protect them -lockdown. People didn’t realize it, they thought they were doing what was best, but in the end, quarantine was the worst thing for an aged population – primarily in care facilites and nursing homes – who were already experiencing so much abandonment. And they, the residents, were never asked about it. They were never given a choice.
To understand the impact of the lockdown on the elderly residents, you must first understand about the long term care system in our country. Most people don’t know, because unless you have a loved one placed in one, it’s not on your radar. But the industry is a quagmire, plagued by regulations from Medicare and Medicaid, a complicated billing structure, and lack or coordination between providers. In 2020 and 2021, thousands of elders with dementia (13,200 above expected, as an example ) died as a result of the industry’s pandemic response, the freak out and the fallout and the fuck ups. People died from isolation and from loneliness, from lack of touch. There is actually a medical term for it, I know this now: Failure to thrive. Many elders died in what amounts to solitary confinement at nursing homes and care facilities all over the country because often residents were quarantined to their rooms alone for days, weeks and even months at a time. Eventually, family members visited at windows if they could, their faces obscured by masks. Solitary confinement is what we do to our most heinous criminals…not to our grandmothers. Furthermore, staffing (already a problem in these places) took a huge hit and continued to get worse as the pandemic wore on, as some healthcare professionals opted not to get the vaccine when it became available and quit or were fired from their jobs. Fewer staff means fewer nurses and CNA’s (aides and caregivers), who are essentially the backbone of care facilities, doing the most intimate hands-on caregiving work: toileting, dressing, showering, feeding the residents. And fewer staff almost always equates to more neglect and abuse (already a problem in these places) as there is only so much one caregiver with 20 or so residents can accomplish. Picture this: the wheelchair-bound sit in hallways in soiled Depends, waiting and wailing. They wait to be changed, to be fed, to be showered; and sometimes, simply, to be talked to.
I know all this because my parents were residents of one of these facilities, a memory care unit in an assisted living facility, when Covid hit. My parents had been adamant when they did their will that they be cared for by others when the time came, so as not to be a burden on my sister and myself. But leaving them behind every time I left the care home flooded me with guilt and felt like abandonment even though I always returned the next day. Unfortunately, it was a troubled experience from the start. The place looked nice enough when I chose it, with a fancier assisted living wing which boasted a cozy lobby and dining area that looked like an upscale Luby’s. The head nurse seemed professional and caring. It rated well enough, and we were compelled to get it because the double room mom and dad would share was huge, a size unheard of in memory care units, and would fit my mother’s piano. My parents could also be together, as some places did not allow married couples to room with one another.
But soon after my parents moved in, problems began to reveal themselves. Corporate management and oversight were lacking, there was constant staffing turnover, hidden prices, sub-par food and a rather poor attempt at appropriate activities that would engage all the stages of dementia. Most residents sat and stared blankly into space all day or at the TV, or they cried and were agitated. The facility was chronically understaffed and the caregivers they were able to find were frequently immature (mostly young women in nursing school who needed the experience), uneducated about the disease of Alzheimer’s dementia, and woefully unprepared. Not all – some. But “some” can have a devastating impact. I know firsthand what barbaric, backbreaking work dementia caregiving can be and there are no bigger heroes in my mind than real caregivers, the ones who truly care. They are paid a pittance while the corporate owners of the facility drove brand new BMW’s.
There’s a whole backstory going on that the marketing people don’t tell you during their glossy tour and it’s impossible to know it until you’re living there. In our case, the night staff was emotionally and at times, physically abusive to my mother. My mother was terrified to go to bed at night because staff would come in every couple of hours for a room check, flipping on the harsh fluorescent lights and throwing her back onto the bed if she tried to get up. The day shift was at times condescending, humiliating, and violating of her dignity. Some caregivers were on a power trip and occasionally withheld food. I’d spent a lot of time racing up to the care home every day to buffer them from these people, to keep them company and to advocate for their care. More often than not, I provided that care myself - showering, toileting and dressing them, cutting toenails. I even cleaned their bathroom and did their laundry. The good caregivers were just overwhelmed with all the other residents’ needs, the bad ones were on their phones. We paid $15,000 a month for their care there.
After my parents had been living in the care facility for about 8 months and after I’d reported numerous incidents to the state to no avail, my sister and I desperately looked for a new place for them. In February, one month before Covid hit, my parents were put on hospice service due to a sharp decline in their health which was not surprising given the emotional and psychological toll the environment took on them. My father was diagnosed with extreme malnutrition. He simply stopped eating. My mother followed right after, also eligible for hospice, due to both her dementia and numerous physical ailments which had left her wheelchair-bound this past year. Hospice generally means 6 month or less to live, and I just didn’t want them, could not let them, die in that place.
We were closing in on finding a new place to move them when on March 17th, 2020 the care home posted a sign stating that all visitors were to be restricted except for essential personnel. None of the other care homes were admitting new residents, and although my parents were on hospice, supposedly one of the visitor exceptions, I was told I would not be allowed to visit them starting in two days, when the issuance would come out by CMS, the governing body of nursing homes. That’s when the bottom dropped out of my world. I had made a solemn promise to my parents never to abandon them, and that is exactly what they would think I was doing. Because how, with late stage Alzheimer’s, would they ever remember why I wasn’t coming by?
So I sprung them. I discussed it with my sister, discussed it with the hospice company who said if I took my parents home with me they could still provide services in my home, and a CNA would be assigned to us as well to help with the caregiving. I made the decision in an instant upon hearing that. The next day I went to see my parents to ask if they would like to come to my house for awhile, while we decide what to do about their living arrangement. They had dementia, certainly, and the conversation was repetitive and at times incoherent, but I knew their hearts. I remember my mother burst into tears and told me she was so proud of me.
I went into overdrive those two days before everything locked totally down, calling medical supply stores in town and having supplies delivered. I got my small, 1600 square foot house with no accessible bathroom ready for them as best I could, I put grab bars around the toilet. I explained the situation to my pre-teen kids, and to my job, which I would try to continue to work from home. There was no choice, I had to have the money. Hospital beds and medical equipment took over my living room where my parents would stay and the pharmacy released their medications to me. I moved them in the following day. Their time with me was beyond hard. Unless you’ve been on the dementia caregiving journey you really can’t know the level of exhaustion that you reach. Even my soul felt tired. But there were moments, glorious moments, both pitiful and profound, when I became closer to my parents than I’d ever been. Where I saw and understood the texture of their love for each other. Where I learned about them and what I meant to them. The tables turned, and I became their mother. I could do for them what they once did for me and it was an honor to do so. It was a herculean effort, but I am no hero and certainly not a saint. I made countless mistakes despite my very best efforts. I simply loved my parents and wanted us all to be together for whatever amount time they had left. I wanted them to be with people they loved, and who loved them, not surrounded by strangers punching a clock. I wanted to hold their hands, not stand at a window in a Hazmat suit peering in, like I’m looking at an animal in a zoo.
My father thrived after the move, for a little while. I cooked his favorite meals and he ate heartily, quickly putting weight back on and his dementia seemed to lessen a bit. He became more alert, a bit more lucid. My mother, on the other hand, took a turn for the worst. The move was hard on her at her age and stage, and she declined rapidly. I know that had I not moved her, she might have had longer. But she would have suffered more. Still this is something I must live with every day, and why I consider indirectly that she was a victim of Covid. My dad passed about eleven months later, in the new care home. It was a better place, and I was able to be with him when he passed, after doing window visits for nearly a year. For nearly a year I sat and shivered in the Oregon rain with my mask on, trying to explain to him why I couldn’t come in and give him a hug. They say people with dementia have lost it. Have they, or have we?
If my uncle were here now, I’d tell him that what marks the before and after time of Covid, for me, is a loss of humanity. We were all so remarkable in the early days- stepping up, putting in the hours, soldiering on in this “new normal” and doing what we had to do. We adapted to each turn of events, each one more surreal than the last. We became more altruistic. Our entire nation (well, almost) did things not just for ourselves, but for the common good. I got my vaccine and booster and faithfully wore my face mask. I followed the rules and took precautions. I wanted to protect the vulnerable, but to what end? And did the vulnerable want to be protected? We assumed the answer for them. At two years into the pandemic, connections became frayed, families were separated, children developed mental health issues, the suicide rate rose. Many, many people died and they died alone. Gradually, we lost hope, too. We were being pulled away from one another at a time we should have been cleaving close. I blame our President at the time who was himself, a virus. Whose response to the pandemic was so bungled that scores of people died unnecessarily. And countless others suffered in silence. The malevolence that our leader unleased during his time in office continues to spread, to mutate. Some days I am glad my parents are not here to see what we have become.
That last time I visited my parents in the care facility, as I was driving away that night, I saw the place transform. The perky marketing and activities people had gone for the day and the mood shifted. While my car heated up, I sat in the parking lot and watched as lights flickered on in the rooms. In one, an elderly man on a walker paced slowly. In another, a frail woman tried, and failed, to open a can of food. I watched as she gave up, shaking her head. And then, as I was driving away, I see her. It is my mother, the silhouette of her in her wheelchair. She is staring out the window. She is waiting for my return.
Amy Massingale is an Oregon based author and poet. Her work has been featured in The New York Times and in several literary journals.