ALL OF US AT THE SAME TIME©Jo Dereske 2014
How She Came to Be
Louise was my father's sister. From a Lithuanian family of five children, she was the oldest – and cruelly the only one still living, having witnessed each sibling’s arrival and departure from the world.
That autumn, she had celebrated her eighty-second birthday in the psychiatric unit of the local hospital, where she was being housed for three weeks after confiding to her doctor that she intended to lure Mike, who'd recently been diagnosed with Alzheimer's, into the car with her and drive smack head-on into an oncoming semi-truck. The doctor, taking her at her word, ordered an intensive psychiatric examination and admitted her to the mental ward of the local hospital that very day.
"This isn't the clinical depression of the aged," the psychiatrist had explained. "It's the same depression a younger person experiences who sees her life careening out of control."
My brother Ray and his wife Barbara lived the closest and had taken to watching out for Louise and Mike as they grew older. They kept a daily eye on Mike while Louise was in the psychiatric unit, witnessing for themselves the extent of his deterioration that Louise had managed to hide from everyone.
The day after Ray and Barbara brought Louise home to her farm and to Mike in her certifiably newly recovered state of mind, she fell to the floor in what the doctor termed a “brain seizure” that sent her back to the hospital, and this time the doctor was adamant: she was too ill to return home, they'd reserved a room in the local nursing home for her to spend her final days. There was little time left and the family should prepare for her death.
"Let us take her home," my brother Ray pleaded with the doctors while Louise lay semi-comatose in her hospital bed. "It's what she wants."
"She's too weak. She requires twenty-four hour care. She doesn't have much time."
"If she's going to die, let her die at home," Ray insisted, "where she's comfortable."
She had no children, only nieces and nephews who both adored her and were terrified of her wicked tongue and her sharp sense of the world. Little got past her and we were rarely clever enough to evade her wit. Perhaps because she had no children, she was expectant that our conversation would be worth her attention. “Cute” didn’t hold water with her.
"If we can just keep her home until she lets go," Ray said. None of us thought it would be long. She was weak, confused, barely able to sit up, declining by the hour. We came to help and to say our goodbyes: me from Washington, my sister Mary from New Mexico, my brother Tom from downstate. Ray and Barbara, who lived ten miles away, took turns spending the nights.
Her ending would be peaceful, we swore. No hospitals, no anonymous surroundings, no heroic measures. Among those who loved her, amidst the mementos of her long life. With dignity.
And with Mike. Always hovering nearby, following her with his eyes, frequently vague and disoriented, other times completely lucid. I’d known him forever as a quiet, retiring man, and believing we were witnessing his basic nature, we’d missed what was happening to him, his slippage into dementia.
But Louise didn't die. “What’s for dinner?” she questioned Ray one afternoon. She shakily made her way to the living room by herself and began to recognize each of us. “What happened?” she repeatedly asked.
"I'm a tough old bird," she proudly proclaimed when she momentarily comprehended how ill she'd been.
Her memory didn’t keep pace with her returning strength. She was unable to fix the simplest meals. The days of the week confused her. Neither of them could be relied on to lock the doors at night. Louise was unable to help Mike or now even recognize his failing mind, which in a way was a blessing. His deterioration had formerly obsessed her, a source of agitation and grief, and the cause of her stay in the mental ward.
“He smells sometimes,” she’d whispered over the telephone to me before his diagnosis, her voice edged in dismay. “He was always such a clean man.”
“I don’t think he loves me.”
“He put the groceries in the garage.”
"I'm better, aren't I?" Louise asked us. "I'll be able to drive tomorrow, won't I?" and in the next breath she might exclaim, in complete surprise, "You mean I was in the hospital? I don't remember that."
In our eagerness to bring her home we'd made no plans for the eventuality that she might recover but not recover enough to live alone again.
In our innocence we'd assured them they'd be together on the farm they loved, that their lives would continue as before, that there would be no changes – ever.
1929 Vince didn’t call for three days. He’d been sick with an awful cold. I felt blue and lonesome and went to see “Dream of Love” with Al. My God, such a night! Men can’t be trusted. Remember that!
I spotted a light in Louise and Mike’s kitchen; one of them was awake. We’d unpacked the truck in the dark, hauling cartons and bags through the snow until midnight. The little house was crammed, boxes spilling into the kitchen, several with flaps undone and partly empty, more untouched, waiting for daylight.
While Kipling peacefully slept, I’d been awake most of the night, my mind a swirling morass of planning and uncertainty. I pulled on my coat and new boots and cautiously crossed the driveway, my arms out for balance against the ice beneath last night’s snow. Where we lived now, in Washington State, below-freezing temperatures were uncommon, and snow even rarer. I’d forgotten what true winter involved.
Breathing felt like ice being shoved up my nose. Pine trees Louise had planted forty-five years ago had now grown to fifty and sixty feet, protecting the path between the two houses, always murmuring and whispering among their heights. At their feet, dried pinecones, blown free in last night’s wind, pocked the snow.
I stumbled into a knee-high drift that knifed in front of Louise’s door, scattering powdery snow into the air, crystalline in the yard light. Kipling had already asked me where the snow shovels were. I didn’t know.
On this day, Louise and Mike’s old habits had resurfaced and one of them had locked the door. I’d forgotten to take the key the night before and I was locked out. I knocked. No movement. I couldn’t see anyone through the window. My panic rose. What if . . . I removed my gloves and rapped harder on the wooden door.
We’ll break a window, I thought as I pounded on the door. I couldn’t believe I’d forgotten to take a key. What could be more basic? A stupid key. Finally, as I was about to return to the little house to wake Kipling, I heard slow movement inside.
Mike pulled open the door and gazed at me blankly, his hair neatly combed but wearing a pair of too-short women’s red polyester pants and a shirt with buttons askew. I knew Uncle Mike too well to be able to discern whether he was handsome or not. He was six feet tall and slender, still heavily muscled. Louise was two years older than Mike. “A man needs an older woman,” she liked to say. “They know more.”
He'd always been reticent, willingly living in Louise’s shadow. Theirs was a marriage where her name was mentioned first, or even without his. “I’m going to visit Louise.” “Let’s have Louise over for dinner.”
She’d fiercely protected him, and no one tumbled to how she’d covered for his failing mind – probably for years – diverting our attention when he forgot our names, claiming he was napping or busy when we visited, until he’d become lost one day on a routine trip to the hardware store and her carefully constructed subterfuge crumbled.
“Hi, Uncle Mike,” I told him. “I came to have a cup of coffee with you.”
He waved his hand vaguely toward the world. “They made it empty.”
“I’ll make some,” I said brightly, realizing how “chirpy” I sounded, how nervous. He followed me to the kitchen and sat at his usual place at the kitchen table, silently watching me put on the kettle, his hands repeatedly smoothing his orange plastic placemat, left hand holding it in place, right hand sweeping from corner to corner. Over and over.
Our presence was no surprise to Mike. During the past month, someone had appeared every day to make coffee, fix meals, and keep them company. He was no longer certain which nephew or niece was which, but he accepted our intrusion as friendly.
The tea kettle whistled and Mike laughed. “Train’s coming in,” he said, then went back to smoothing his placemat.
I poured him a cup of coffee and set it on the placemat. He turned it between his hands and frowned at the movement of dark liquid before he sipped it.
“It’s cold out,” I said. “Your thermometer reads eighteen degrees.”
He nodded. “Pretty cold. Might snow this year.”
Beyond the kitchen stood the rarely used dining room and beyond that the glassed-in room – once a porch and now called the sleeping porch – where Louise and Mike slept. They’d traded their original bedroom off the dining room for the sleeping porch years earlier, moving closer to the trees and light. “I have to see what’s going on outside,” Louise had said. “I might miss something.”
Louise stepped into the kitchen, in nightgown and robe. Mike gallantly rose from his chair. “Good morning, chickadee.”
“You mean, old crow, don’t you?” she mumbled as she shuffled past him.
Once a quick-moving woman, now she steadied herself with one hand on the back of a chair. Her hair was thick and luxurious, a silver that younger women paid to mimic. At eighty-two, Aunt Louise remained an arresting woman, her cheekbones high and her eyes wide-set.
She spotted me pouring coffee, accepting my presence without question but protesting. “You don’t have to make our coffee. We can do it.”
I already knew they couldn’t, that once when they’d awakened before my brother Ray arrived, he’d walked into water spilled across the kitchen floor. Who knew whether it spilled before or after it boiled? Like the co-conspirators they’d been their entire married life, they’d denied they’d spilled any water at all.
“Just for today,” I assured her. Her hand rose to her mouth, a sure sign that my presence was unsettling.
Where are you staying again?” she asked.
“In the little house.”
“There’s no heat over there.”
“Ray fixed the furnace,” I reminded her, not knowing that this particular conversation would be repeated nearly every day in the months to come.
1929 Poor Vince is broke and looking for a job. I’m so lonesome and restless. I want him to love me so badly.
Mae and Sylvia and I went to Briar’s. I got rid of half a dozen.
Mrs. B. makes it unpleasant for me. Gee! But I hate my work.
I’m homesick and I’ve made a decision. I’m going to be a Catholic again – for Mother’s sake. It means more to her than it does to me.
How We Came to Be
“This is multi-infarct dementia,” Louise’s doctor had told Ray after her last appointment. “Now, you virtually have two people with dementia living together.”
We brothers and sisters consulted by phone. We all agreed: a nursing home was out of the question. We couldn’t bear the thought – not yet. But what to do? Barbara was a visiting nurse, but none of us had personal experience with dementia.
Our solution was impractical, crazy, ill-advised. “You’re out of your mind,” friends said. “You’re just postponing the inevitable.”
That was exactly our goal: to postpone the inevitable. Kipling and I had some flexibility. Our children were grown. After a week of intense consideration while he made his decision, Kipling obtained a six-month leave of absence from his job. I knew he’d agreed to come to Michigan because I wanted it so desperately.
I was a writer and besides finishing up a new book, I had a contract to write three more. I was convinced I could work anywhere. We planned to remain in Michigan through the summer, to give Louise and Mike final months on their beloved farm, and during that time, we’d gradually accustom them to the idea of an assisted-living home. I not so secretly anticipated that the stability of our presence would slow or even stall the ravages of their disease.
“Just make the decision to put them in a care home and do it,” one acquaintance advised. “It’ll be easier on them in the long run.”
Another, older, friend said wistfully, “I wish I would have done that for my mother. If you do this, you’ll always be grateful.” I appreciated her encouragement but I was foggy about her meaning. Why would we be grateful?
Kipling and I arrived in Michigan laden with the essentials, including my computer, favorite books, videos and bags of Northwest coffee from friends who believed we were retreating to the ends of the earth.
We were also armed with excuses to offer Louise to explain our presence: I was homesick for Michigan; I needed the peace and quiet to write; she was doing us a favor by letting us stay in the little house; if there was any neighborly thing we could do to help them out, we’d love to. She accepted our decision with little comment, unusual for her.
1929 Vince didn’t show for our date. I was left standing in front of Paulie’s all mad and lonely. Chicago felt too big and I missed home. I told Mrs. B.I was sick and went home on the train to Michigan. I hope it shakes up Vince when he can’t get ahold of me.
Dumb, but I cried when I saw Dad and Johnny waiting at the depot. Johnny’s sure big for a kid. Tofelia is Tofelia. Ha! Mother cooked a big dinner of chicken and kugelis and cabbage.
The weekend went too fast. Dad has Johnny working like a man. Frank came by to help in the cellar. Mother sent a basket home with me.
Met an old daddy on the train who asked me out. Guess not! Two letters from Vince when I got home and Mrs. B complained he’d called too many times over the weekend. Ha!
Later in the morning of that first day, as we unpacked in the little house, the temperature outside rose to 21 degrees. Bright sun cast blue shadows across the snow. The little house grew snug and familiar as we spread our possessions in familiar configurations. Kipling had found snow shovels and we’d gleefully shoveled the path between the two houses, pausing to toss a few snowballs and congratulate ourselves on our tidy job. What fun, we thought.
My late-night fears abated. Kipling and I would spend the winter popping in and out of Louise’s house, eating cozy meals with them, providing good cheer and security, tactfully easing them toward assisted living until they believed they’d made the choice. I’d complete my book in record time and leisurely begin the new contract, perhaps even complete it. Kipling would have the freedom to try his own hand at writing, as he’d always wanted to. It would be idyllic, I just knew it.
As I untangled my computer cords on the glassed-in porch, movement caught my eye. Mike, without a coat and in his slippers, ambled down the driveway toward the mailbox. The winds had scoured the snow off the drive but it was humpy with ice, treacherous even in boots. When he returned I followed him inside and set his coat and boots on a kitchen chair.
“If you go out again,” I told him, “here are your boots and coat.”
“Well,” he said, grinning, “boots and coat.”
Louise glanced up from the newspaper. It was still open to the first page, just as it had been two hours ago. “Mike knows how to put on his boots, don’t you, Mikey?”
“I certainly do.”
An hour later I spotted him circling our pickup truck before he headed toward the mailbox, again without a coat and in his slippers. I intercepted him and walked back to the house with him.
“Take my arm,” he said, crooking his elbow, “so you don’t slip.”
Inside, I moved the chair closer to the door, nearly blocking it so his boots and coat would be in his path. “Wear these if you go outside,” I told him, patting his coat.
I sounded like a cheerleader. I was clueless how to talk to him in my new role. Was I the visiting niece offering a suggestion? The new director of his life? And why should he, the man who’d taken over his family’s farm at age nine when his father died, who’d been independent and capable his entire life, listen to me?
“I’m not going outside,” he said, casting me an indignant look and pretending to shiver. “Too cold.”
But barely a half hour later, he was on his way to the mailbox again, his step unsteady, still in shirtsleeves and slippers. The mail wouldn’t be delivered until late in the afternoon. Each hopeless trip was new to him, an old habit he repeated, totally unaware of the time of day or of his fruitless earlier trips. Had our presence upset his usual routine or perhaps these multiple trips were his usual routine?
I returned to their house and pulled a heavy sweater off the door hooks and held it open for him to slip his arms into. “Here, Uncle Mike,” I said in my chirpy voice. “It’s a little cold in here. Why don’t you put this on?”
“No, I’m not cold,” he said and returned to the kitchen.
“It’s cold?” Louise asked. “Then, Mikey, go down and start a fire.”
“You have automatic heat now,” I reminded her, pointing to the thermostat. “You don’t need to make a fire.”
“When did we get that?”
“Ray installed it last summer, remember?”
“It’s news to me.”
But several minutes later Mike emerged into the frigid air. Wafting behind him and around him were thin shreds of gray smoke.
I screamed. Terrified, Kipling and I dashed to their house. Mike ignored us and continued coatless and bootless toward the mailbox.
Inside, the air was dusky with smoke drifting up from the basement. Louise stood unsteadily in the kitchen, waving a towel. While Kipling ran to the basement I grabbed Aunt Louise’s shoes and coat to take her outside.
“Poor Mikey,” she said, coughing. “Sometimes he forgets how to make a fire.”
“Why don’t you come to our house?” I urged her, holding open her coat.
“Your house?” she asked. “Don’t you live in Washington?”
“We’re staying in the little house now,” I explained.
“Oh, I don’t want to go there. There’s no heat. Just open the door and this smoke will dissipate.”
Kipling returned from the basement, hacking. Mike had attempted to build a fire in the wood furnace and left the furnace door open and the damper closed. We turned up the thermostat and opened the doors and windows, the three of us waving towels to move the smoke outside into the freezing day
“Well,” Uncle Mike said when he returned empty-handed from the mailbox and spied us waving the towels. “Birds in the house.”
So now we had our first glimpse into the future: life without a central core of logic, or memory, where reason didn’t always hold an honored place. And unless we acted: dangerous.
We had the door to the wood furnace welded shut. Every time I found matches or lighters in their house I quietly removed them. While Louise and Mike slept, Kipling moved the firewood from the woodbox beside the fireplace to the barn, but Mike followed his tracks in the snow and carried the logs back to the house, one by one.
At least, we consoled ourselves, he wore his coat and boots.
Before we left Washington, I’d borrowed books from the library and read about dementia, both Alzheimer’s and those diseases frequently categorized with Alzheimer’s: multi-infarct dementia, Parkinson’s and Huntington’s, Creutzfeldt-Jakob disease, and Picks Disease. Many of the dementia-causing illnesses were impossible to diagnose until an autopsy after death.
Everything I read illustrated how little was known about these baffling diseases. There was no predictable progression, the experts told me, no single set of symptoms, and worst of all, no cure. “Each case is unique,” every book and article stressed.
Nothing more than guessing.
To read about dementia and to witness its effects were two diametric experiences. These were people we loved. How could we interrupt their collapsing universe and restore a semblance of normalcy and security to the aunt and uncle I’d known all my life?
For I was determined not to let them disappear, that somehow our presence would make a difference, would hold further degeneration at bay. If they couldn’t fight dementia, we surely would fight it for them.
1929 I loaned Vince some money I’d been saving, just until he gets his first paycheck. He wants to look for a diamond ring as soon as he gets paid! I’m so happy.
A letter from Mother. Tofelia ran off with Gordon! She’s only sixteen. The fool.