Frances Hilary McGuigan is my mother, though I’m tempted to say was my mother because there’s so little of her left now. Alzheimer’s sucks an entire life away, bit by bit at first, almost imperceptibly. There were small things we hardly noticed in the very beginning. She’d forget names of people she’d known for years, or place names. Leave a pot on the stove until the metal bottom melted away and formed a sort of filigree of gray metal on the burner. And she was always looking for her keys or her purse. But everybody does those things at some point or other. Out of stress . A preoccupied mind. Depression.
In those early days of the illness, when she was still living at Bethany Beach, Delaware I took to recording some of my mother’s memories of her own childhood. She loved to talk about it all. Particularly her father, Martin Cosgrove; her mother, Laura; her siblings; and the house they grew up in on Moyamensing Avenue in South Philadelphia. I thought that by recording her memories, as many of them as I could, I would preserve her in some way. I don’t think that’s true now. Though I’ve got hours of her voice on tape, her words give shape to a life that is no longer there.
Much later as the disease progressed, my mom would return to Moyamensing Avenue, in her mind, at least. It was the last place she remembered and was a safe harbor that brought her joy.
In one of those recording sessions, she said this: “My parents moved to Moyamensing Avenue because it was tree-lined with beautiful porches. And because it was a Jewish neighborhood. All the children of my father’s Jewish friends went and he was going to make sure we lived in a Jewish neighborhood. They are people of the book and we are people of the book. He had great ambition for his kids and education, he understood, was the key to everything.”
My mother and her two siblings went to college as their parents had hoped. She received a master’s in English from Georgetown University in the 1960s when not many women even attended that school. I remember the write up they did about her in the Washington Post at the time. There was a photograph of her in a wing chair in our living room, surrounded by her brood of children.
She was a smart woman, extremely well-read and more than a little argumentative. There were times she would read five or six books a week and her memory seemed flawless. She could talk about anything from Chaucer and Milton to Kerouac and Vonnegut. And it wasn’t limited to literature. She could discourse about parasitology and particle physics and histories, arcane and mainstream. Her own humor was anything but mainstream: it was dark at times and sometimes vitriolic. She jousted with words and her tongue often struck like a viper.
She and my father had been married 43 years and then he died—still young, just sixty-eight. His death took a toll on my mother. She couldn’t get her bearings after that. Seemed to lose focus and more often than not was depressed, particularly during the winter and the early spring. Ten years after my father’s death my mom’s memory started slipping. My brothers and sister noticed it and my sister Fran convinced her to sell the beach house and move in to a retirement community in Falls Church, Virginia not too far from where we had all grown up. All of us were in favor of this move: It seemed like the only thing to do.
Before the move, my siblings and I weeded through all her possessions and got rid of many of them. Certain pieces went to immediate family members, others went to consignment shops. Some things ended up at a charity store on Delaware’s eastern shore. We were stripping her house of furniture and art work, the trappings of an entire life time. Each piece carried some emotional attachment for my mother, was, in a way, a separate memory.
Her new apartment was simply too small to accommodate all of everything she had so paring down was a necessary action. It all had an uncanny parallel to what was happening inside her brain. The disease was emptying her mind of its possessions, of its memories; there was no longer any room for these things.
At the time of her initial move from the beach house to the retirement community, my Mom’s spirits improved and her memory seemed to get better—or the disease plateaued, for a time. When she first moved in my sister spent weeks helping my mother decorate her new apartment, which was fairly large with three rooms, a kitchen, two baths, walk in closets. My mother felt at home there and many weekends my kids and I would visit her and stay in the apartment, sleeping on the couch and a couple of cots from housekeeping.
My Mom would say: “It’s like living on a cruise liner.” Or: “It’s like a five-star hotel.” Which in some ways was true. People made up your bed in the morning, cleaned your room, laundered your clothes and there were a couple of nice restaurants there and the food was fairly good. But as she said these things you could tell she was saying them to convince herself more than anyone else and she wasn’t really buying any of it. You can disguise an institution in the smartest of outfits but in the end it remains an institution.
Recent memories for my mother did not exist, even in those early stages of the disease. She would forget something that happened the day before. Sometimes when we were talking she’d repeat what she’d said five minutes earlier. And then this: no matter what day of the week it really was, she always thought it was Sunday. At first I used to correct her. “No Mom it’s Monday,” I’d say. But this seemed to upset her, so bye the bye I just went along with it.
So when I talked to her on a Tuesday, she’d say: ”Today is still Sunday.”
And I’d say, “Yeah, yeah today is Sunday.”
Then she’d say, “I don’t know where the hell I am. I’m out of it.”
As a boy I always thought it would be terrifying if you were a tree rooted in the ground when developers arrived with backhoes and chainsaws. How you could see them coming, but couldn’t move a single inch like in a nightmare when you can’t escape a pursuer. My mom was aware of what was happening in those early stages of Alzheimer’s—you could hear the fear in her voice. She sensed what was occurring yet couldn’t run from it. The disease was clear-cutting her memories from within. It would break my heart every time I talked with her, and there was nothing anyone could do except ease her pain with good memories out of her own past. I would dredge them up and try and return them to her and for a few minutes they would hold and then they’d slowly dissolve. It was like pouring water into a glass with a wire mesh bottom.
All of this probably started ten years before there were any noticeable symptoms. That’s what researchers think. Deep in my mother’s brain in an area called the hippocampus, which is roughly the size and shape of a seahorse, abnormal proteins called plaques and tangles were invading my mother’s neurons. Because of the brain’s symmetry, there’s a hippocampus in both hemispheres. And if one gets damaged there’s not a problem, but when both are compromised memory loss begins. This crescent of brain cells is where new memories are formed and may well be the seat of emotions and learning.
Plaques began coating the neurons, while tangles congested the core of these cells. Neurons are the precious packets that contain memories linked by synaptic lightning that flashes through the brain when you remember a time past. Like a late summer afternoon when you are young and free of worry, the sun baking you, as you lay on a bed of thick grass eyes trained on drifting white clouds above while in the background there is the whirr of cicadas and beyond that the steady hum of a lawn mower that slashes a nearby lawn filling the air with the smell of fresh cut grass. Something might spark that memory and thanks to the synaptic creek beds that link the neurons together all relevant information rushes back to you in an instant and gives you that day of summer bliss as if it were happening all over again.
Recalling some past events was no longer possible for my mother because the tangles and plaques were killing the neurons, snipping away her memory like pruning shears. These cells were dying by the millions and they left gaps which filled with liquid. Her brain, which had once been a solid mass, was becoming a sort of Venice with a system of canals. And it spread throughout her brain. Gray matter vanished and with it memories and emotions and even this—her personality. My mom’s brain was wasting away. It was smaller than it had once been and it was dying.
Almost every time I talked to my mom after the onset of the disease, she was invariably tired, though she didn’t do anything all day except sit in her apartment and go downstairs for meals and meds. I’d visit her at least once a week and call her at least once a day.
Invariably, she would say the same thing, or a slight variation on it. “I’m just always tired. I’m like a fish out of water. I’m going through some paper work so it’s a quiet day and I’ve been tired all day so I’m ready to go to bed.”
There came a time when it became apparent that my mother could no longer drive her car, a late model Kia SUV. My brother or sister Fran, who became the primary caretaker for my mom, took her keys away. And that kind of kept her at bay for a while.
Fran was afraid, as were we all, that my mother would wreck the car, killing herself and others. It was a real fear too. She never knew where she was going and would frequently lose focus.
Then came the day when the car was taken away.
This incident set off a firestorm in my mother’s skull that raged for more than a year. Everything she said during that period was unreasonable and tainted with anger. Sometimes I’d just listen to her rant non-stop for an hour or more. She’d go through the same litanies over and over for days and weeks and months. It all overlapped and paranoia ruled. She was convinced my sister Fran and brother Marty had conspired against her. And it seemed unjust to her. It never stopped and her mind was so diseased by then that it was beyond clarity.
It was all crazy talk and embittered. But through it all she kept planning for her freedom with four wheels at her beck and call. And I just played along because when you challenged her she would scream and slam the phone down. That had happened a lot and I did everything I could to avoid it.
Her infinite capacity for hope amazed me. She knew she was going to drive again, though we all knew it could never happen. Yet she continued to plan.
“I don’t feel like I’m incompetent to drive,” she told me. “My body works, my hands work, my mind works. You know what I mean, when you lose your car, you lose your independence.”
When she used the word independence, I felt my chest tighten. My mom had lost her husband and her house and her possessions and now her car. I’m sure she must have thought, what next?
Then one day her ranting stopped. She had finally given into it and soon she wouldn’t remember ever having driven on her own.
On about that time, the vultures that prey on the infirmed and elderly began circling my mother. They would strike through the Home Shopping Network on TV and through telemarketers on the phone, swooping down to take what they could. My mom was defenseless and she started emptying her bank account. If it hadn’t been for my sister Fran’s diligence, they would have wiped out her savings. But my mother didn’t see it that way. She was angry at my sister for questioning her purchases which were still sealed in large brown shipping boxes that she kept hidden.
I’d looked inside those boxes which she kept stored along one wall of a walk in closet. There were at least ten large cardboard boxes, shipping boxes, and within each of these as many as two dozen smaller boxes. Each of the smaller boxes contained a worthless trinket, inferior jewelry that had been sold to her as the real thing. It was all junk.
Then a telemarketer convinced my mother, who was computer illiterate and had never journeyed into cyberspace, that she needed identity protection. This creep bilked her out of thousands of dollars and again thanks to my sister some of that money was recouped and my mother no longer had access to her savings.
For the longest while, my father, who everyone called Mac, was a constant in my mother’s life. Even as she was forgetting people, including some of her immediate family members, she could always remember my father. More often than not he was on his way over to Goodwin House and then they were going to the beach to the house she had built after his death, the house that now belonged to someone else.
Once, while we were driving endlessly through Northern Virginia, past old haunts I felt sure would jog a memory—and at times they did—we drove by a Mexican restaurant on Wilson Boulevard and my mother told me she and my father were planning on eating there.
“We’re going tonight,” she said. “Mac loves it. It reminds us of Mexico.”
Mac had been dead for more than a decade, but of course I didn’t say anything to my mother. I just nodded along and we continued up and down the rolling hills of suburbanized North Arlington. It was in the spring and trees had begun leafing out and the grass was almost emerald, that lush, and dogwoods were in bloom and azaleas erupted in fountains of magenta and red and the palest lavender. The car windows were down and the air was cool one second, warm the next, and at times there was the scent of lilac. Late that afternoon I dropped my mom off at Goodwin House and after a few cups of coffee in what they call the café, we went up to her apartment and talked for a while. As I was leaving for Richmond I said: “Have a great time with Mac tonight. When’s he coming over?”
My mom looked at me with wide, startled eyes: “He’s been dead for ten years. How could you forget that?”
“I don’t know,” I told her. And then I left.
Every time the kids and I visited my mom we always took her out to lunch and dinner and in the mornings would eat breakfast at a local diner that my mom loved. Between meals we drove through Northern Virginia over to Washington, D.C., out to Great Falls Park and sometimes into the mountains. We’d log a couple hundred miles on a Saturday or Sunday and my mom was at her ease watching the world pass before her from the passenger seat. She developed a strange fascination for trees. She would notice every one of them and comment on them as we drove along.
“I bet that tree was here before this country was founded,” she would say of a willow oak that was no more than fifty years old. And when we hurtled along interstate highways she would imagine the trees falling across the asphalt, crushing cars under them.
“Be careful,” she’d yell in my ear. “That one’s gonna fall. It’ll take out ten cars.”
Of course, none of the trees were going anywhere. They stood silent. They stood still.
When she said these things she was invariably smiling and would laugh. Something about the possibility of trees crushing cars and trucks amused my mom. And my kids and I laughed along with her. “Grandmom Fran,” my daughter would say. “That one, the really big one, right there. That’s gonna fall.”
My son Charles would be beside himself with laughter, would sometimes pee his pants. “All the trees are gonna fall,” he’d say. “And everybody’s gonna be dead.”
And my mom laughed harder and pointed out more and more trees that were on the verge of crushing us.
Shortly after Thanksgiving they moved my mother out of independent living and into assisted living. She had gotten to wandering the halls at night, getting off the elevator on the wrong floor. She’d forget her room number and even forgot the purpose of the keys that jangled on her wrist from a white plastic coil.
Her new digs consisted of a bedroom, a small hallway, a full bath and a closet. That was it. It was like a motel room and my mom slept on a single bed, and every time we visited her, she was on that bed reading the same book. Sometimes the same page. From one week to the next.
It seemed that time was coming to a standstill in that room. Nothing changed. Every time we entered the room we would find her in the same exact position on that bed, curled toward the wall, her back to the window, the book opened in a cradle she made with her arms. That room was like a cocoon but there was no promise of emergence, no chance of metamorphosis.
As I said earlier, every time she moved her possessions dwindled—there just wasn’t the room to contain them all. So when she got into this assisted living suite all she had was a highboy, a marble-topped table and a small bookcase. There were only a few pieces of artwork on the walls and all the little bits of bric-a-brac were gone. There was a photograph of my father and one of her father next to her bed.
Memory itself is such an odd thing—a record of what is past. An actual record, too. But it’s not digital, not gathered by a remote machine that you can turn on and off. It’s inside us and always running, even in our sleep. These recordings are not merely audial or visual, either. Memory draws on all the senses—touch as well as taste—and then fishes up feelings from the deep well of emotion, and molds such a convincing model that it’s as if you’re experiencing that same moment again and again. One of the problems with memory is that it never allows the past to die and some people get trapped in certain loops of their past, replaying the same slight or injury, over and over and over, until it displaces the present and eradicates the possibility for a future. That was certainly the case with my mother. She would talk about things that had happened to her seventy ago when she was just a little girl, things that had hurt her and she wouldn’t, or couldn’t, let them go. In the end they devoured her and clouded her view of the present. That was in the early days of the illness.
Here’s what happened as the disease advanced: My mom lost a lot of her bad memories. She had always been a grudge holder, but all that changed. Family members she had ostracized, people she loathed, no longer bothered her and when I would mention their names she would just nod and smile and remember some good thing about them. That was not at all like my mom.
You look for silver linings wherever you can find them and this was it for me. My mother’s vitriol and anger finally left her and she had retained some of the good memories of her life. Her girlhood home on Moyamensing Avenue for one. She had become a nicer woman, but she was no longer my Mom.
On a New Year’s Eve an old girlfriend went along with me to visit my mother. We’d spent a good part of the day with her and then at five in the evening left to return to Richmond. My mom was clearly upset and we calmed her and then left the room and rode the elevator downstairs to the main lobby in silence. That main lobby was buzzing with ancient people who were decked out in formal attire—women in very old evening gowns, men in tuxedos that were worn and wrinkled. I saw a patina of mold on the lapel of one man’s tuxedo jacket and shirt he wore had a frayed collar. All of them tried to stand erect and many of them used walkers. Tables were piled high with hors d’oeuvres and cakes and cookies and there were bottles of champagne chilling in stainless steel buckets.
As we passed through the front door of Goodwin House on our way outside, dry, frozen air rushed to greet us, so cold and sudden when it hit our nostrils we had to catch our breath. As we approached the car I turned to my friend and said: “Would it be okay if we went back so we can celebrate the New Year with my mom?” My friend nodded and smiled and we returned. As she took the elevator up, I grabbed a few plates and loaded them with food but the champagne was guarded by young men and women dressed in the black and white of servers. So I slipped into the café and took a wide mouthed carafe of white wine and then made my way for the elevator and returned to my mother’s room. At the door I could hear laughter and when I entered laden with food and drink my mother smiled and recognized me and called me Charles. We sat and talked and ate and drank and at about nine o’clock turned on the TV and found a station that was playing old Marx Brothers movies. We watched Horsefeathers and then A Day at the Races. I know my mom had seen both these movies many, many years ago, but it was as if she was seeing them for the first time and she laughed and would say as an aside: “Who are these guys; they’re so silly.”
At about eleven I visited the concierge on the first floor and secured a small single cot and rolled it to the elevator and up to my mother’s room. I set it up in the small hallway just at the entrance to my mom’s studio apartment and as midnight came and went, my friend and I lay down on the mattress that could barely contain one adult. In the dark for the next couple hours we could hear my mother, just around the corner, saying: “Holy Mary, Mother of God. Holy Mary, Mother of God.” She said it over and over and over again and again and again, all through the night. “Holy Mary, Mother of God. Holy Mary, Mother of God.” And each time she intoned these words I would finish that prayer in my head: “Pray for us sinners, now, and at the hour of our death. Amen.” In the morning we left before my mother woke.
It was the most memorable New Year’s Eve I have ever spent and though I know my mother doesn’t remember that night, I will take the memory of it with me to my grave. I hope.
My mom lasted in assisted living for under a year and then they moved her to the inner sanctum—a place called the memory support unit. It’s a nicely appointed space and the people working there are kind and gentle, but it’s a scary place—the maximum security portion of a retirement community. You don’t get out, not on your own. The doors to the world at large are all locked and to gain entrance you have to alert a member of the staff.
The first time I entered that place and looked at the residents, gathered in chairs and wheelchairs around a flat screen television set I was taken back to my own childhood.
On around Easter, every year when we were little kids, my father would take us to a local feed and seed store or a Woolworth’s and buy each of us a baby chick. They had been dyed and mine was always pale green with feathers soft as fur. We would clasp them gently in our palms, look into their black eyes and lower them into their new home, a cardboard box littered with wood shavings. Two lids from jars, one with water the other with dried oatmeal. In one corner of the box for warmth was a single low-watt light bulb. For the first week or so the chicks were lively, cheeping and peeping around the clock. Then they started quieting down and their eyes were almost always half-closed. They could barely stand up on their stick like legs and would teeter with their small heads hung low.
That’s what the people in memory support looked like. When they stood up, they swayed a bit and their heads were always bowed and their eyes just thin slits.
My mother no longer remembered me or my kids. And finally forgot about her father and my father and even Moyamensing Avenue. She could not carry on a conversation. She mumbled words you couldn’t hear, little fragments that made no sense at all. Her mouth, even when she was silent, was always moving as if she had something to say. But she couldn’t get it out. There was no memory left. Her entire life had been erased.
But my kids had memories of her and the beach house where she had once lived, a house built on a canal that was fed by Little Assawoman Bay. Catherine’s memories of my mother were all fond ones and in the hearing of them I could remember my mom as she had been. Catherine mentioned a daily ritual that my mother performed with religious zeal.
Every morning just at sunrise a group of mallard ducks would gather below the deck off the second floor and begin quacking and my mother would feed them white rice she’d prepared the night before, a whole potful of it. There were fifteen or sixteen ducks and sometimes they had ducklings in tow and my kids were absolutely crazy about this morning ritual which my mom urged them to take part in. They’d spoon out balls of white rice and fling them off the deck and they’d drop to the grass like meteors that exploded on impact and then the ducks would get down to business, combing the grass with their bills.
Catherine also remembered how my mother used to dress before the Alzheimer’s came. “I remember she always wore really bright colors,” she said. “She always had bright colors on and a lot of jewelry. Big bulky earrings, necklaces, bracelets. But she would always wear colors. Now she just wears black and white.”
My daughter was right. My mom’s dressing habits changed. It was as if the color of Sunday morning newspaper comics had been bled away for the black and white of a weekday.
My mom just continued to decline. A couple months after Easter I spoke with her on the phone and I could imagine a card and an envelope on the table next to her chair and the receiver held between her ear and shoulder. She couldn’t converse but words still meant so much to her and she could still pluck from them from an Easter card she’d received from her sister Kosh and her husband David. And she could still articulate every word she read.
“May the peace of Christ be with you at Easter and always,” my mom read. “And may that peace give you the serenity that you might need and may this Easter give you that degree of happiness that you might need. And it’s signed Kosh and David.”
She read it again and again for a full hour. Even read the address on the envelope. That’s all she had in front of her and it’s all she could do.
For the longest while I would think of my mother as a husk like the shell left behind by a cicada, all the internal meat gone, just a crisp skin remaining. But it wasn’t that way. Not really. Her personality was gone and chunks of her brain were missing but her body was still intact. She ate with good appetite, breathed, shuffled around, watched the TV in the common area and she could still speak, though half the time it was the gibberish of an infant. Her heart continued pumping blood, the nerves in her skin responded to stimuli. She was still functioning. But she wasn’t there. We all knew and we all feared that she could live in this manner for the next ten years. Her own mother lived until she was ninety though she had all her wits about her when she passed on. My mother got a raw deal and did the best she could with the hand she was dealt. I think she always did that. Through the course of her life, she did the best she could.
In a way we were burying my mother and had been doing so for years. A painfully slow burial as if we scooped the earth out with tablespoons and returned it with teaspoons. So we had ample time to say goodbye. And she is still with us.