All the Ways We Disappear

by Ash Anderson


            “I just want to see my granddaughter one last time,” were the words my grandmother kept repeating as we drove to the hospital. She cried and fidgeted in the passenger’s seat, chain-smoking Marlboros. I’d given up correcting her. Each time I said I was there, asserting my existence to a woman who raised me, she called me a liar and asked when we’d be going home. She did not recognize me, but neither did I recognize her. Where did granny go?
            My family has cared for my grandmother on and off since a doctor diagnosed her with “unspecified dementia” earlier this year, and the truth is, we can’t do it anymore. The first time we moved her into our home began in May 2020, while she was recovering from multiple organ failure. Because of the pandemic, neither the hospital nor nursing facility she transferred to allowed visitors unless death was imminent, so we couldn’t see her for weeks, even though her death seemed just short of imminent, depending on which of the ER doctors we spoke to. I wondered if I’d see her again. Like so many people in the time of Covid, it was like she disappeared. Despite the facility’s promises to schedule Facetime meetings, we had trouble connecting, and with each conversation, it seemed like she was becoming more isolated and delusional. Though we doubted our qualifications, my family brought her home and joined the millions of other US citizens caring for an aged, disabled, or chronically ill loved one in 2020.
            There were plenty of exceptional reasons to bring a loved one home from long-term care at that time. Covid deaths and nursing homes go hand-in-hand. Restricted visitation also meant less oversight on the quality of care. And the isolation imposed by the pandemic was and remains painful. Nursing homes already had issues with oversight in pre-pandemic times, evident in the slew of lawsuits against them in recent history. Many end-of-life care facilities are under-funded, under-staffed, and have poor work environments. I should know: my grandmother worked in a facility’s business office before her illness. She begged me never to put her in a facility like that, where complaints went unresolved and employees stole from residents.
            The average nursing home assistant makes just over minimum wage to work with those who have behavioral or physical disabilities. A lot of patience and training is required. But who wants to wipe the butt of a stranger when they could be folding clothes for minimum wage?
            My first experience as an unpaid or ‘informal’ caregiver to my grandmother ended after two months when she shattered her ankle. A social worker assured us that, after surgery, she’d be sent to a long-term care facility if no one could take her. My mom thought it was a good idea. My grandmother needed to be restrained because she kept trying to get out of bed, literally forgetting that she had a broken ankle. It was too much. We applied for Medicaid, since Medicare wouldn’t cover long-term care. When we missed a payment while waiting for the application to be approved or denied, the rehab center informed us, with two days’ notice, that her rehabilitation was complete and she could move to assisted living instead, where she’d have considerably less supervision. My grandpa always said you can’t get blood from a stone, but we’re not stones. My grandmother is a human being, and she happens to need round-the-clock care. I looked up the assisted living facility and saw several scathing reviews, most of them detailing abuse, negligence, a lack of cleanliness, and other typical complaints. My grandmother could barely walk. I’d witnessed her try to drink from a TV remote—and they wanted to send her to the same facility where Michael S. said he’d put his mother-in-law, but not his mom?
            My grandmother and I are close. Even during the lows of a lifelong struggle against depression and alcoholism, there was never any doubt in her voice when she told me, quite often, that I could do anything. For a woman who came from a working-class family, a tumultuous childhood in which marriage seemed more like an exit strategy than a happy ending, it was important for my grandmother that I have options. When I considered becoming her caregiver for the first time, I felt a desire to repay a lifetime of debt, a childhood. I thought about all the times I cried for her help in bathroom stalls as a toddler, when she cared for me without protest. We brought her home again. We’d kept the rental hospital bed at my mom’s just in case. But we lasted only a month before I found myself driving her back to the hospital, half-hanging my head out the window to avoid the smell of her cigarettes. 
            When we arrived, I asked to speak to the intake nurse in private. It would have killed my grandmother, who was now acting with perfect clarity, to learn that just an hour ago she’d called me a liar. We were reaching the height of another episode, for lack of a better word, and de-escalation was more like bomb disposal. Speak with softness and she’d mock you for condescension. Act stern and she’d cry abuse. I’d walk into her room in the morning and she’d tell me to get out. She’d beg me to bring her outside and then wouldn’t come back in. She often said she wanted to die and refused to eat. Some nights, she’d throw her dirty diapers on the floor. Slight missteps in a conversation led to some of the most abusive dialogue I’ve ever heard. 
            “You’re not my daughter. You depress me,” she once told my mom.
            This kind of psychological warfare had become routine. Usually, the best thing to do was give her space until she forgot why she was upset. I told the nurse that she was acting more aggressive lately, either because of her dementia or because of her meds. There were kids in the home, my younger siblings, and it was scary. I turned around and saw her smiling in the wheelchair and thought about how crazy I sounded, and also how frail she was. 
            “Okay,” the nurse said. He didn’t look at me. Instead, he peered into his computer screen and clicked away. “Someone will be right with you.”
            I’ve learned that dementia can come in many forms, more than I ever would have guessed. The second most common, besides Alzheimer’s, is Lewy Body Dementia—the kind we suspect my grandmother has. I’d never heard of it before reading that Robin Williams had it. In the coroner’s report, his doctors described one of the worst pathologies they’d ever seen. His widow, Susan Schneider Williams, powerfully recounts his decline in “The Terrorist Inside My Husband’s Brain,” which details his paranoia, delusions, and the deluge of symptoms that would end in suicide. One professional, according to Schneider, said: “It was as though he had cancer throughout every organ of his body.” After witnessing my grandmother’s struggle, I understood.
            Lewy bodies are clumps of a protein, alpha-synuclein, that form in the brain. They ordinarily serve several functions in our neurons, enabling them to communicate in a process called synapses. In Lewy Body Dementia, these clumps disrupt synapses, causing cell death. Unlike Alzheimer’s, those with LBD don’t always have memory issues initially. Instead, they present with behavioral problems, hallucinations, and movement issues that often don’t occur until Alzheimer’s latter stages. LBD is related to Parkinson’s, which involves the same protein but manifests elsewhere in the brain, presenting different symptoms. Parkinson’s and Lewy Body Dementia usually overlap. To further complicate things, many of those with LBD also have Alzheimer’s. We still don’t fully understand what causes these diseases on a molecular level, nor do we know much about how to prevent them or alleviate symptoms.
            Last year, my grandmother—a risk-averse and un-athletic woman—was the last person I imagined participating in extreme sports, but, approaching seventy, she got serious about her bucket list, so we went white water rafting. I nearly flew overboard, and she sliced her knee, but we lived. A year ago, that’s to say, my grandma was driving, working, and rafting. Today, she can’t use the restroom without help. How could a protein do this much, this fast?
            We waited for eight hours in the ER during the height of the pandemic. Several chairs had been erected per social distancing guidelines, but each one was full, so we lined up in the hallway leading to Children’s Emergency. I snuck her out to the curb for smoke breaks and eventually had to ask a nurse if she had any extra “adult briefs.”
            “You mean diapers?” she said.
            “Ah, yeah.” I gave her a knowing look. We made our way to the bathroom. You would think that, if anywhere would be accessible, it would be a hospital bathroom, but that wasn’t the case. How is anyone supposed to hold a door open while wheeling another human being through it?
            A nurse retrieved us. She took a blood sample and brought us to a hospital bed. A physician’s assistant came and asked, again, why she was there. My mom texted me a list since I didn’t feel I sufficiently articulated the situation to the intake nurse, and because I didn’t want to abandon my grandmother—a practice so common in the US it has a name: “granny dumping.” I read the list: Severe mood swings. Confusion. Aggressive behavior. Swearing. Inappropriate language. Etc.
            She refused to go to bed and yelled at everyone, even the dog. She mistook me for her toxic ex-husband. She told me she’d stolen a bus and needed to return it to a certain school. One day she was inexplicably a combat veteran. For a week she thought my mom was actually her mom, and the following week we were sisters. At times she was sixty. Others, a high schooler. In one of my most disturbing memories, she made a pass at me, mistaking me for a man. 
            I told the PA that we wanted to know if the agitation was from her meds or the disease. She was prescribed an anti-psychotic, which can backfire in LBD, worsening symptoms.
            “Okay,” he said, “Got it.” The man wrote on his clipboard. “I actually just want to say that I understand this on a personal level, and I’m sorry you’re going through this.”
            “Thank you,” I said.
            “You understand all the risks that come with hospitalization? Pneumonia? COVID? MRSA?”
            I nodded. In our darkest moments, my mother and I both secretly hoped that my grandmother would catch something because we knew she’d rather be dead.
            “Kill me if I ever get like that, please,” she once said about a patient at her work who was so far gone, he didn’t respond when vermin crawled on him.
            The physician’s assistant returned and said that my grandmother’s bloodwork was okay. They would do a CT scan and call us tomorrow with the results, but they’d keep her overnight at the very least. I asked if I could leave since I had school the next day. He nodded and left.
            “Why did you talk to him without me?” my grandmother asked. She looked angry.
            She’d be suspicious if we spoke in private but horrified if she knew the truth, if she remembered throwing things or the delusions of living in her childhood home. The paranoia wasn’t new. If anyone laughed it set her off. She thought the government planned Covid for population control, her sisters stole her checkbook, and my mom poisoned her. I missed the woman who sent me care packages on deployment, stocked my favorite drinks in the fridge and stuffed twenty-dollar bills in my holiday cards. 
            I couldn’t think of anything to say, so I said I love you, left, and went home, exhausted. It feels wrong to call it a burden, but I’ve operated nuclear reactors for the Navy, and I can honestly say that being a caregiver for someone with dementia is the hardest thing I’ve ever done. 
            Knowing is half the battle. Even though Lewy Body Dementia is the second most common dementia, we had a hard time understanding what we were dealing with. We still don’t have a diagnosis. Since my grandmother began exhibiting noticeable symptoms during the pandemic, a neurology appointment in March 2020, right before she got sick, was rescheduled indefinitely. By the time she received her diagnosis of “unspecified dementia” in May, after the coincidental organ failure, doctors said it was too late for medicine that could help her cognition. Right now, the medication that exists for Alzheimer’s and other forms of dementia can only alleviate symptoms, not eliminate the disease or halt its progress. There is no ‘cure.’ Dementia is caused by so many illnesses, so it’s unlikely there will ever be one. The ER doctor who treated her during our first visit told us that dementia was “best diagnosed in an outpatient setting.” He refused to perform a CT scan with contrast to provide more clues on the precise disease my grandmother might have. If she does have Lewy Body Dementia, we still won’t know, officially, until her passing. Right now, the only way to conclusively diagnose Lewy Body Dementia is through a postmortem autopsy. Many with her condition end up dying from pneumonia or swallowing difficulties, but academic literature lists “failure to thrive” as the most common cause of death, almost 65%. 
            Of the seven different stages of dementia, we suspect that my grandmother is in stage five or six. In the final stage, seven, she will likely lose her ability to communicate or respond. I will never know how many of the early signs I missed, but this disease took my grandmother overnight. This disease is reminiscent of Hemingway’s answer for how a person goes bankrupt: “Two ways. Gradually, then suddenly.” 
            I think my grandmother always assumed she would simply die. We have so many ways to plan for death, from life insurance to ‘traditional’ wills. She made me a folder containing instructions for everything I needed to do in the event of her passing: sell her car, claim her insurance, inform Social Security. But nothing about this. She didn’t have an advance directive, a ‘living will’ that typically appoints power of attorney or a health care proxy to act on one’s behalf in the event of incapacitation. She can’t manage her finances anymore, but we have no legal guardianship over her without hiring an expensive lawyer.  
            My grandmother convinced a social worker at the hospital to call and ask when we’d be picking her up. We had to remind her that my grandma had dementia. The nurse was probably not used to having a conversation with someone who can go from totally ‘with it’ to thinking she’s a combat veteran in two minutes. I always wonder how the wires get crossed, as if there could be some logical explanation for this. Why did she sometimes confuse me for her ex-husband, or her daughter for her mom? It’s like trying to interpret a dream. 
            She was in the hospital I took her to for months, looking for an available bed in a care home that will accept pending Medicaid applications as a promise of payment. She has no assets and a growing heap of medical bills. 
            My family is cycling through the five stages of grief over again, as grieving someone who is alive can feel bizarre. I know that my grandmother grieves for herself as well. I’ve seen her cry so many times, forgetting and remembering her condition. She also mourns her mother, who died years ago, but she forgets this too. We lie about it, sometimes, when she asks where “Ruth” is these days. I tell her Grandma Ruth is in Florida, which isn’t totally false. I think it’s where she’s buried.
            But some of our most beautiful moments come from her forgetting. For example, she’d often ask me for dessert late at night, thinking that it’s lunch. Like a mother spoiling her child, I feed her sweets at all hours, when I can. Whoever she thinks I am, or wherever she is, I want her to have happy moments. Whenever I give her ice cream these days, she forgets ever having tried her favorite flavor and reacts in awe. I wish the world could see her face. I don’t want to romanticize this disease, but I also don’t want to reduce my grandmother’s existence into a depressing void.
            Having dementia and losing a loved one to dementia both prompt existential questions. It made me question the nature of selfhood and identity. There are glimpses of her, how she was, sometimes. But isn’t this ‘new person’ also her, a part of her? We call her outbursts, the ones where she says awful things to me that she would never say before, “just her disease,” but what about the smile on her face when she eats ice cream, or says she’s proud of me? Is that “just her disease” as well? Where does her humanity stop and “just her disease” begin? 
            So many of us reject dualism, the idea that our minds are isolated from our brains or our bodies, but I hope the dualists are right, that something of my grandmother’s soul is immune from the erosion of her mind. I wish she was protected in my own mind, too, that I could erase some of the memories I have of this experience, since they make it hard to remember better days. What a relief it would be to forget about all the ways that people disappear. 
            But I will keep her on a pedestal in my memory for as long as possible until, eventually, she fades from there too. Forgetting is the whole problem, and I’m fighting to stay vigilant.  

Ash Anderson (she/they) is an MFA candidate at Boston University with a concentration in fiction. Their work has appeared in Breakwater Review and So It Goes: The Literary Journal of the Kurt Vonnegut Memorial Library.