The other day, my housemate thought she saw flames on the adjoining property. She called the fire department in Cotati, California where we live. Two fire trucks arrived with fire fighters loaded for bear. The only problem was that there was no fire. It was a false alarm. My housemate, whom I’ll call Gretel, has been fined $2,500. She’s fighting it, or rather her daughter, whom she could not live without, is fighting it.
Gretel is 85, has short term memory loss and suffers from dementia, a brain disease that comes with aging and that affects some 50 million people worldwide. It can play havoc with families like Gretel’s and individuals like Gretel herself who suffer from it. I have written about dementia in order to humanize it.
Over the past several decades, it has been mapped and explored by caregivers and by the patients they have helped in part by making the disease less of a stigma. The titles of works include, “My Mad Dad,” “Remember” and “I’m Your Daughter, Julie: Caring for a Patient with Dementia.” (See the website, Alzauthors.com) While there is no known cure, essays and stories about it seem to reduce anxieties and fears.
I pray I don’t get it, though I know I might. I’d hate to lose my mind and be like Gretel, who is typical in many ways of women her generation. Born in the Pacific Northwest in the 1930s, she is imbued to this day with the mindset of the Depression. Psychologically, she doesn’t know abundance, but rather scarcity, though in reality she lacks nothing. She has also been diagnosed as depressed. Some days she seems catatonic.
The only times I’ve heard her laugh are the times when she’s on the phone talking with an old friend, sometimes from girlhood. Then she seems genuinely happy. But these days, in large part because of the pandemic, she has fewer and fewer friends. Over the course of the four decades that I have known her, she has not had a single male friend, though she clearly loved her father, Martin, and her brother, Gary.
I’m not sure if she loved her husband, Bill. They were stuck with one another, so entwined it was impossible to disentangle. Once when we were on vacation together she invited me to keep an eye on her and her husband and tell her what I noticed about their relationship. I declined to do so.
One might call Gretel “a woman identified woman.” She never took her husband’s last name and she never defined herself as a “wife.” When she looks back at human history she’s sure that in the beginning matriarchy prevailed. Once patriarchy arrived on the scene, it was all downhill, with wars, oppression and all kinds of inequalities.
At times I’m angry about my own living situation, which I have helped to create, though I know it’s also beyond my control. When my anger rears up, I tell myself, “It’s not about Gretel. It’s about you.” Still, it’s challenging not to point an accusing finger. Once, I stood a foot from Gretel and asked, “What do I do with the garbage.” She averted my gaze and said, “Are you talking to me?” When she doesn’t seem to know who I am, and when the living room and kitchen, which we are supposed to share, feel like enemy territory I go to my room, close the door, write, read, talk on the phone, email, Zoom, sleep and dream.
When I first talked to Gretel about renting a room in her house — because my landlord evicted me and I needed a place to stay — she said, “I’m afraid you’ll see me as I am and won’t like me anymore.” I once liked her a lot. A wise woman and a psychotherapist, she shared insights about people we both knew. She also tolerated unconventional behavior. Young women sought her company and she sought theirs. Her house was a sanctuary for the wounded and the beautiful. That’s one reason I flocked to it. Also because her husband was a lawyer who defended drug dealers. I was a journalist writing about them. In those days, Gretel called herself a “moll” and seemed to enjoy the role.
Living in the same space with Gretel over the past twelve months has felt like being in “suspended animation.” My friend, Marie, used those two words to describe my situation. “Suspended animation is when you feel time has stopped,” she explained. She added, “Living through the pandemic one can feel suspended between life and death.” The pandemic and dementia together have been a double whammy.
Gretel and I have lived with COVID-19 from the moment I moved into her house. We have worn masks, practiced social distancing and washed hands frequently. We have both been tested negative. In the early days of the pandemic, Gretel would take off her mask inside a supermarket and hug a friend she recognized. Not anymore. She has learned some things, not others.
Over the course of the last year, she has written in longhand a dozen or so stories that seem to be autobiographical. They are to a jigsaw puzzle in which pieces are lost or missing. Nothing adds up to a coherent picture. I offered to type Gretel’s stories on my computer. “No,” she said, though I am not sure why. Perhaps she doesn’t want me to have that much perceived control over her life.
Everything in her house is topsy-turvey. Nothing stays in the same place for long, which means that Gretel can rarely put her hands on what she wants: purse, eyeglasses, phone, broom and the remote for the TV, which she watches at least three-hours a day.
She’s also on her computer, usually from the moment she gets up in the morning to just before going to bed at night. Still, she doesn’t yet get the hang of email, websites and the Internet, though her daughter and I have explained them repeatedly. “What are you doing on your computer?” I asked one day. “Nothing,” she said. Maybe she simply stares at the screen. She certainly doesn’t answer my emails.
When Gretel wants to communicate with me she usually writes notes on small pieces of paper and leaves them where she thinks I might see them, on the edge of the kitchen sink or near the toilet. Sometimes I do see the notes and sometimes they get lost in the chaos which feels like it grows larger by the day. To get around the house, Gretel uses walking sticks. Some are store bought and others are branches from trees that she has found on her seven-acre farm. She now has at least fifty sticks, as though the more she has the safer she will be. That seems delusional.
Fear dominates much of her life, including the fear that criminals will break into the house. She makes sure the doors are locked before she goes to sleep. “I’m locking up.” Those are the last words she speaks to me at the end of the day. Losing “it,” losing control, seems to be what she fears most of all. Surely, on some level she knows she’s lost a lot of it. Her daughter took away the keys to her car and won’t let her drive. Neither will her doctors.
For a long time, I had no reality check for my experiences with Gretel. Then I watched Elizabeth is Missing, the Masterpiece drama in which Glenda Jackson plays Maud Horsham, an elderly English woman with dementia who aims to solve two mysteries even as she sinks deeper and deeper into her illness. Jackson inhabits the role and gives a brilliant performance. It’s probably the best of her decades-long career.
My housemate and Maud have some things in common, including bewilderment about what one might call “reality,” but my housemate could never solve a mystery. She is a mystery. Why she does certain things, like leave the doors to the house open, when it’s cold outside, or why she refuses to turn on the heat, when she’s shivering, are a mystery to me and to her daughter and her son-in-law who live next door and who know and understand much of what I’m going through.
“My mother is the mystery you have to solve,” Gretel’s daughter told me. She knows my own murder mysteries, one of which I wrote in my little room here on the farm. Gretel served as the model for the mother in the book.
When I moved into her house I didn’t know what I was getting into, though I had known her for about forty-years. Her husband died two years ago. A stroke damaged his brain. I visited him in the facility that housed men and women who had lost their minds. He might have recognized me, though we never had a conversation. The stroke deprived him of the ability to speak.
Now, I live in what was his office, which feels haunted by his ghost and some of the ghosts of my own past. Nearly all my life, I have lived with old people and people who are dying, beginning with my grandparents, and continuing with my own mother whose heart failed when she was 80 and my father who died at 67 of cancer. He accepted his passing; my mother fought it the whole way.
I would say that I know the country of old men and old women. For years, I seemed to seek them out, as though I needed them for some obscure reasons. I befriended Solomon Sorgenstein, Sam Krieger and Benedict Sobler, and watched them die.
Before I rented my room in Gretel’s house I knew the word “dementia,” but I didn’t know what it meant to suffer from it. I am still learning to navigate the territory. Like Maud in Elizabeth Is Missing, Gretel clips and saves articles from the newspaper that arrives at her doorstep and that she reads, though I don’t know how much she absorbs. The papers pile up day-after-day. A week after they’ve arrived, I throw them away. Like Maud, Gretel digs in her own garden, picks flowers, makes bouquets and seems to derive pleasure from poking her fingers in the earth.
When she was a girl she took an aptitude test. The examiner told her, she tells me, that the results suggested that she would be good as a janitor. Forty or so years later, she remembers and is still hurt. She’s good at raking fallen leaves and adding them to the compost heap, but she doesn’t have the kind of clarity that Maud has when she says, “I haven’t lost me marbles, though everyone thinks I have.” Still, Gretel does say something similar: “My son-in-law thinks I’m a crazy old lady.” Indeed he does. Unlike Maud, Gretel has never said, “I haven’t lost me marbles.” Maybe she knows she has lost them. Maybe she doesn’t want to admit it to herself or anyone else.
I tell myself to have compassion. That’s challenging, especially when Gretel says things that sound and feel hostile, as when she said on one occasion, with bitterness, “When you’re in my state and condition, see how you like it!” Ouch! I was frustrated when she lost a pair of my pants, which she was going to repair, and when she removed a box of cereal from my side of the cupboard and wanted to toss it. As her daughter said, “What’s hers is hers, and what’s yours is also hers.”
I knew Gretel was messy before I moved into her three bedroom, three bathroom house. All over the place, books, papers and items of clothing were in small piles. What I didn’t know is that there was a mess in Gretel’s head. I should have known. She always was spacey.
Her daughter and son-in-law think that something traumatic happened to her when she was a child. That could be, though she has some sharp memories of a seemingly happy childhood during World War II, when U.S. soldiers were stationed near her home and Japanese families were removed from their houses and placed in detention centers. I wonder if they’re false memories. At times they seem like they might belong to most anyone of her age and generation.
Sixty-years ago, when Gretel was pregnant and expecting a child, she went to Sweden to give birth. She told me that she was ashamed, but she doesn’t say much more. Her daughter tells me that her mother took her to political demonstrations in the 1980s and abandoned her in the crowds. Now, Gretel waits on her daughter’s every step and every word. Her daughter does everything humanly possible for her mother, but it’s never enough.
Yes, something must have happened in Gretel’s childhood. She won’t eat fish, which was a big part of her Scandinavian family’s diet when she was a girl. She has forbidden me to cook any kind of seafood in the kitchen. The smell makes her nauseous, she says. But she just burned a skillet with bacon, filled the house with smoke, turned on the TV and sat down to watch as though nothing had happened. I clean up the mess.
About three-months after I moved into Gretel’s house she woke me at about 4 a.m. and told me there were thieves in the backyard. “Go out there and chase them away,” she said. I didn’t want to, but I went outside with a flashlight and poked around. There were no thieves, no humans of any kind and nothing was missing. I went back to bed.
I don’t just get up and leave. I feel a sense of responsibility. I moved in as a renter, but I have become a caregiver and a housekeeper who runs errands, washes dishes, reminds Gretel to close the refrigerator door and turn off the running water at the tap. Sometimes I watch the TV news with her. When insurgents stormed the U.S. capitol on January 6, 2021, she told me, ”There’s a revolution in Washington.”
Greta takes antidepressants, though I don’t know if they help. For a brief while, she did psychotherapy on the phone. She has told me several times that she wants to end her life, but doesn’t know how. I’ve tried to persuade her that her life is worth living.
I wish she was as capable as Maud Horsham and might be able to solve the mystery of her own identity, but I’m afraid that she’ll slide down further into dementia. It’s inevitable, her daughter says. A friend of mine whose mother suffered from dementia says it’s bound to happen.
When I asked Gretel what she would do if she saw a fire again on the adjoining property, she said, “I’d call the fire department.” She has not thought about consulting someone else. Why should she? She thinks she has all her marbles. I wonder how many times she can call in a false alarm before she’s taken away and placed in some sort of facility for men and women who have lost it.
My friend, Marie, told me about the time she visited an institution she describes as “like an insane asylum,” and where the inmates were lined up in wheelchairs, drugged and demanding attention. “One mother didn’t remember her own grown child when she was seated in front of her,” Marie told me. “The child couldn’t accept that behavior from the parent.”
“Radical acceptance” is what families need when a parent suffers from dementia. I learned that term when I was depressed and tried to deny it, which only made things worse. Accepting it, helped me heal. Now I have to accept the fact that after a year of the pandemic I feel isolated. Nobody, including my own brothers, wants me inside their houses, even with a mask on.
Some of my most cherished memories of life on Gretel’s farm are of harvesting pears, apples and berries, making jams and pies and eating them. But I have also found it depressing when I’ve watched Gretel sit in a cold, dark room with only the glow from the TV to illuminate her face. All too often, she doesn’t want heat or light. My time here has been bittersweet. I expect to go on living here for another six months or so and until I can find another place to live, which is not easy to do in the pandemic. I’m curious to find out how things will turn out. Meanwhile, every day around 11 p.m. I say “good night” to Gretel and mean it, and every day around 9 a.m. I say “good morning" and mean it, too.
(Jonah Raskin is the author of For The Hell of It: The Life and Times of Abbie Hoffman and American Scream: Allen Ginsberg’s ‘Howl’ and the Making of the Beat Generation.)