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Every Tuesday

ALL OF US AT THE SAME TIME is a memoir about returning to rural Michigan to care for an aunt and uncle, both with dementia.

Seasons of nature, of radical change, and the immutability of love.

ALL OF US AT THE SAME TIME is only available here, for free, on my website. For an explanation of why I chose to "publish" ALL OF US AT THE SAME TIME, in this manner, see my Home or Newsletter page.

I'll post one chapter every Tuesday. The most recent chapters will be in the center column. Older chapters will appear below the newest and later indexed in the side column. You can bookmark or use RSS to subscribe to ALL OF US AT THE SAME TIME.

Entries in italics are from Louise's 1929-1933 diaries.

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ALL OF US AT THE SAME TIME

Chapter 16

July 22, 2014

Tags: Chaptr 16

ALL OF US AT THE SAME TIME

©Jo Dereske 2014



Chapter 16




We Make a Decision


The end of our six months hung over us like an upcoming storm. Even though Ray and Barbara and Kipling and I had given ourselves a few more days to subdue our waffling and graduate to real decision-making about Louise and Mike, my mind became absorbed with the practical: change-of-address cards, lists of magazine subscriptions to cancel, more lists: electric, gas, and phone companies, nurses, meals-on-wheels. What about Morris, the garden, the bird feeders?

It didn’t take long to realize I was using the nitty gritty to postpone thinking of the inevitable. Deciding Louise and Mike’s future was too big, too painful. I wanted somebody else to do it so I wouldn’t be complicit in wrenching them off the farm and “committing” them to a nursing home, so I wouldn’t suffer the guilt. I even descended into wishing nature would intervene.

I called Susan for her thoughts and the receptionist told me she was gone for a week and by the way, the Alzheimer’s group meeting was canceled, too. Kipling was preoccupied, saying little, and I felt he too was shifting his mind back to Washington, to what awaited him in his job.


1931 This is the worst snow storm I’ve ever seen. It’s been blizzarding for three days. Schools are closed, roads are drifted shut. High winds and dark all day. I helped Frank dig the snow away from the garage so it wasn’t any higher than the roof. Dad was afraid it would collapse.


Ray planned to drop his son Jonukas off for the afternoon. He was seven and I looked forward to a good dose of Boy. When I told Louise, she gave me “the look” and said, “Ray doesn’t have any children.”

“Yes, he does,” I said.

“Oh, that’s right. He has two daughters.”

Without thinking, I corrected her, “He has sons.”

Her face reddened and she said in a cold voice, “Daughters.”

I backpedaled. Here I was again, arguing over nothing. In ten minutes she might insist just as stubbornly that Ray had six children. What difference did it make?

Before I could agree that Ray had daughters, she caught something in my expression and up came her chin, defiant. “You can go about your business now,” she said.

“I’ll be in Stella’s Garden,” I told her and hastily escaped.

At one time Louise had carved out flower gardens all over the farm: multi-shaped patches of bright color: the sublime mixing with the ridiculous: exotics nurtured in sheltered corners to petunias planted in a defunct porcelain toilet. I lacked her skill to revive her gardens, but there was one tangled oval behind her old antique shop that I hacked and dug at. Louise called it “Stella’s Garden.” It was choked by weeds and canes of wicked thorns.

Stella was Louise’s younger and much-loved sister, a great favorite in the family who’d died of throat cancer in middle age nearly twenty years ago. Louise, benumbed by sorrow, had created the garden after Stella’s death.

I understood sisters. Stella had been ten years younger than Louise. My own sister was twelve years younger, and a world without her was inconceivable. So this was the one garden I’d accepted as a personal mission.

I had charged into the mass of hay-like, grass-throttled greenery without telling Louise what I was doing, working out of her sight. It was a hands-and-knees job, and long sleeves weren’t sufficient protection from the thorns that stabbed and scraped my arms, and caught in my hair.

I hadn’t paid much attention to this garden years ago and didn’t know what to expect. What slowly emerged was a lovely arrangement of pale-colored old roses and fanciful slabs of rock carefully pieced between the plants
.
Digging around a mica-laced slab, I’d unearthed a rusted chain the size of a bracelet wrapped in rotted cloth. I carefully reburied it. I removed the broken statue of a small girl and replaced it with a concrete flower I found in Louise’s antique shop.

When I’d pruned and shaped the rose bushes, cut the grass and dug around the rocks, I set a chair in the middle and walked Louise across the yard on my arm and helped her sit down. It was a sunny day, the roses were fragrant, even a butterfly put in a well-timed appearance, fluttering past Louise’s knees.

“Ah,” she sighed in satisfaction. “I’ve worked so hard on this garden.”

I could tell she had forgotten its deterioration, that it had remained well-tended and sumptuous in her mind, a loving memorial to her sister.

“It’s beautiful,” I agreed.

“You go,” she told me, motioning me away. “I’m tired. I’ll sit here a while and rest.”

I looked back after I reached the little house and saw her wiping her eyes.


In the middle of the night, while we both tossed and turned in the humid darkness, Kipling said, “I was reluctant to come here in the first place.”

I knew that. I didn’t say anything, waiting.

“But now, I don’t want to leave. I don’t want to see Louise and Mike in a nursing home, not while they can still enjoy this place and each other. I can’t imagine them living anywhere else.”

“Me, neither,” I agreed, “but what else can we do?”

“If you’re willing,” he said, “and if it’s possible, I thought I’d call Ethel and talk to her about extending my leave.”

Ethel owned the business where Kipling worked. I admit the thought of his extending his leave had crossed my mind but it was too much to ask. Six months was already generous, but to ask for more?

Maybe we were again postponing the inevitable, but I didn’t care. We spent the remainder of the night sitting up in bed with the lights on, each of us with our own pencil and paper, mapping out a plan. To stay, to truly ease Louise and Mike into leaving, each point, preceded by one of us saying, “If it’ll work . . .” or, “If we can stay . . .” By four in the morning, we’d more or less settled the near future and we fell into a deep and grateful sleep.

I was awakened by pounding on the door of the little house. It was nine o’clock, when we were always up by seven.

I pulled on my robe and hurried out to the porch. Louise stood on our front step in nightgown and robe, holding out an empty cup. “Could Mikey have a cup of coffee and a piece of bread, please?” she asked. “He’s hungry.”

Kipling made a few phone calls. As if the gods had approved of our decisions, Ethel extended his leave another six months and offered him a raise and promotion when we returned to Washington. He hung up, a quizzical expression on his face. “Maybe I should have left sooner.”

“We’ve decided to stay until the end of the year,” I reported to Susan.

“Good.” Her voice was warm and approving. “I think you made the right decision, not just for your aunt and uncle, but for you, too. I promise you, if the situation becomes unreasonable, you’ll know it’s time to move them. You will know.”

Our life suddenly had shape, parameters, and with Susan’s help, we made several other decisions, the greatest being that Ray would finish applying for Mike’s guardianship. We were ebullient with relief.

Susan rarely spoke of her personal life but explained why she’d postponed our last Alzheimer’s meeting. All we’d been told by the receptionist was that she was absent, tending to “family matters.”

But now she shared that her grandmother had suffered a severe stroke and been hospitalized, on life support. Her grandfather had made the wrenching decision to disconnect her machines. “They’d been extremely close their entire married life,” she said. “Hardly ever out of each other’s sight after he retired. He told her goodbye and went home and had a heart attack himself and died. She died the next day.”


1931 I couldn’t stand it and took the bus to Chicago. It took over twelve hours with the bad roads. Billy has a nice place at 6434 Kinbark. I’m SO happy to be with him again. We went to the south side.


At Ruhlig's Nursery I bought more petunias, daisies, and Nicotiana. Robin, the owner's wife, was a friend of Ray's and recognized me. Over the years she'd stopped many times for Mike's vegetables and remembered his beautiful gardens. "He could make things grow that no one else could."

She ran after me as I was climbed into the car. In her arms she carried a huge hanging basket of impatiens. "Would you give these to your aunt for me?" she asked. "You don't have to tell her who they're from. I don't care if she remembers me, just so they give her some pleasure."

Robin’s gift set me to thinking. Where were Louise's friends? All my life, despite her sense of privacy, I'd been aware of the number of people who contacted Louise and visited her and wrote and sent cards and gifts. "She has so many friends," was a common comment.

Well, where were they now? Beyond close relatives, an arthritic younger friend stopped by occasionally with homebaked goods. The people buying seventy acres of the farm on land contract brought their payments monthly and visited fifteen to twenty minutes. Don and Terry across the road kept an eye on the farm. If we were gone and they saw unusual lights or a strange car drive in, Don investigated.

"Where are they all hiding?" I ranted to Kipling. "All those people she used to drive here and there, all those friends who attended auction sales with her, people from church? Where is everybody?"

"Maybe they're in the same situation she is," he offered. "You're forgetting she's in her 80's."

"She had younger friends, too," I reminded him. "What about the woman she taught how to appraise antiques? Or the two women who used to stop by and ask her advice about refinishing furniture? Remember when I told you about the summer she spent comforting her friend who lost her child? The woman practically lived here. Where is she?"

Nearly every time we were in town, someone asked, “How are Louise and Mike?”

"Why don't you drop by for a visit? They’d love to see you."

"I will," We were told. "I will."

But rarely did anyone. Not the people she’d counted as her friends. We’d intercepted two realtors and a timber cruiser, scoping out whether Louise and Mike would be moving into a nursing home and if the farm would be sold. With the creek and the ravine and forest it was prime property, probably easy to sell in a soft market. An antique dealer dropped by wanting to buy Aunt Louise's antique stock "now that she's out of business."

But there were signs that Kipling was at least partially right. Laura, who delivered Meals on Wheels passed messages to Louise from Alice, to whom she also delivered meals , a friend of Louise's since they were 14. Alice was housebound and through Laura, invited Louise to visit. “I’ll take you,” I told her eagerly, but she refused to go out, saying, "No, I'm not strong enough to visit," so they continued to pass messages back and forth.

A friend named Sylvia from Chicago called from her nursing home room, wondering why she hadn't heard from Louise. "I miss her," she told me in a voice thick with tears. They hadn't seen each other in almost forty years. "Is Louise's mother still alive?" she asked me twice.

I offered to write letters for Louise. "I'll do it myself when I feel better." But I wrote notes anyway to acquaintances who did drop her a note or a card, briefly explaining the situation, telling them how much their letters meant.

She wouldn't go visiting, she wouldn't talk on the phone, she didn’t want me to write letters for her. She was wrapping herself in isolation and I didn't know how to unwrap her.

But summer was gentle, for all of us. We experienced a night that was as soft and luxurious as a dream. At ten-thirty, the phone rang and it was my brother Ray. “Go outside and look up,” he urged. We did, just as a flash of green streaked across the sky.

The Northern Lights. We carried a blanket along my trail beyond the orchard and settled on the grass to watch the show. The fireflies blinked on and off across the field so thickly they appeared as flocks at the edge of the woods, a whip-poor-will mournfully called.

All of this accompanied by green and pinkish lights shimmering and flashing to the north and overhead. They shifted constantly, first a flat bright light near the horizon, then streamers of green that fanned out overhead, then the entire northern portion of the sky lit up like phosphorous curtains, fading to black while another section of the sky began to shimmer and flow, sometimes pale green, sometimes the color of dusk, sometimes dawn.

Morris found us and curled up near our heads, purring so loud we could barely hear the whip-poor-will. Bats darted over, and the sky to the south was glossy in its comparative blackness, thick with stars. We stayed out until the lights faded and the mosquitos gathered extra forces to attack us and then reluctantly went inside to bed.

In the morning when I made coffee in Louise’s kitchen, I found a yellow note on Mike’s placemat. Written in Louise’s crabbed handwriting, it said, “Dear One, Go back to bed.”

I was still puzzling over it when Louise entered the kitchen. “Did you see the Aurora Borealis last night?” she asked me, as clear-eyed as any time I’d seen her.

“Yes,” I said, surprised. “Did you?”

She nodded. “Mike and I sat in the swing and watched it.” And she described it in detail, smiling the entire time, the same phenomenon Kipling and I’d watched the night before.


1931 Overslept and missed mass. I’m a naughty bird! Billy said I’m so hot he can’t keep up with me! Tee hee. Cold but no snow. I want new clothes. I need them and can’t have them.


Next Tuesday, Chapter 17: The New Doctor

Chapter 15

July 12, 2014

Tags: Chaptr 15

ALL OF US AT THE SAME TIME

©Jo Dereske 2014



Chapter 15




Decisions and Raccoons


The reality was that our six months in Michigan would end in three weeks. Six months, we’d pledged; we’d commit six months of our lives to ease Louise and Mike from their farm into assisted living. We’d begun this venture because we loved them, because we believed it was too soon for a nursing home. More time on their farm was a gift we’d all wanted to give them.

The people who’d made that decision seemed very far away – all those “istic” words applied: idealistic, optimistic, unrealistic. Aside from our single failed visit to Meadow Manor, we hadn’t broached the subject with Louise and Mike, hadn’t done a single thing to make it occur. We’d been acting like we were living in a fantasy world that only required us to cope, not instigate any changes.

To be fair, coping – holding their lives steady – sucked more energy than I’d dreamed possible. Maintaining any equilibrium was pure triumph.

But now, carrying through with our original goal of a care home felt unspeakably cruel, and as Louise called deceit, “a dirty rotten trick.” Despite all the difficulties and challenges and downright disasters, they trusted us. (more…)

Chapter 14

July 8, 2014

Tags: Chaptr 14

ALL OF US AT THE SAME TIME

©Jo Dereske, 2014


Chapter 14



We Become Spies


The day after what we would later refer to as, “Mike’s first episode,” my brother Ray and I spent an hour on the phone discussing our options. He and I spoke at least once a day, keeping each other up to date, sharing news, opinions and bad jokes. I considered him a good friend as well as a good brother. “They don’t have to talk to each other every day,” Barbara told Kipling, teasing, “as long as they plan for it.”

Ray and Kipling went shopping at Radio Shack, where they bought an intercom and 150 feet of wire, and in the early morning light before Louise and Mike were awake the two of them strung the wire out the kitchen window of the little house, looped and threaded it up into the pine trees and along branches across the driveway into the main house. They hid the intercom on top of Louise’s refrigerator, pushed far back with a light dishtowel covering it.

Working an intercom was beyond Louise and Mike’s understanding and although this was not exactly an ethical enterprise and we didn’t feel totally comfortable with it, Ray and Barbara and Kipling and I agreed that leaving the intercom turned on was mandatory for their safety. (more…)

Chapter 13

July 1, 2014

Tags: Chaptr 13

ALL OF US AT THE SAME TIME

©Jo Dereske

Chapter 13




Mike's Search for Meaning


“Look!” Louise gestured upward. “It’s raining.”

We sat on the sunny patio, the sky was azure, no clouds in sight. But when I looked in the direction Louise pointed, my first thought was that we were witnessing a mysterious burst of raindrops from a cloudless sky.

Tens – no, hundreds, maybe thousands – of gossamer threads gently drifted downward and across the lawn, highlighted by the bright sunshine. So fine and sheer that if the sun hadn’t been shining, the minute glints would have been impossible to see.

“It’s a spider hatch,” I told Louise. “Baby spiders riding strands of web.”

I recalled the enchantment of E.B. White’s Charlotte’s Web. I’d read of spider hatches but never seen one. The baby spiders were miniscule dots clinging to their threads and venturing out into the world. Gently drifting and wisping on the slightest stir of air. It was a beautiful sight. (more…)

Chapter 12

June 24, 2014

Tags: Chaptr 12

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 12




Morris the Cat Loses a Battle


Nearly every tree in the yard cupped a bird’s nest in its branches, tucked in tree crotches or amid masses of leaves, invisible but for the colorful entrance and exit of new parents. But an invader was marauding the nests. At the base of a pine tree we found a fresh robin's egg, its tiny perfect yellow yolk spilling out from the sky-blue shell into the grass. In the early evening as Kipling and I walked the trail near the orchard a swallow screeched and wheeled in the air, clearly distressed. On the next turn around the trail, we found a fresh speckled egg broken on the ground, its insides cleanly removed as if the shell had been licked clean. (more…)

Chapter 11

June 17, 2014

Tags: Chaptr 11

Trilliums

ALL OF US AT THE SAME TIME


Chapter 11



True Spring


Just when we were convinced it was safe to begin digging around in the dirt and rototilling the garden space, when we thrilled to birdsong before dawn each morning, and migrated to short sleeves most afternoons, the temperature suddenly dropped into the low teens by dinner time and that night several inches of heavy wet snow fell, bowing the tree branches already thick with budding leaves, and sliding off the roofs and railings into heavy piles of mush.

Louise stayed in bed all day, vowing to sleep until true spring arrived. The birds acted dazed and sat by the feeders puffed into round balls to keep warm. I bundled up and walked to the mailbox, squinting against the gloppy flakes. To my left, in the snowy ravine, frogs frantically peeped in amphibian dismay. (more…)

Chapter 10

June 10, 2014

Tags: Chaptr 10

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 10




Movement


We arrived early for our first Alzheimer's Support group meeting, expecting twenty or thirty people, but there were only six of us sitting around a large table. “There will be more people later,” Susan Oyler said confidently. “They’ll come.” We only shared our first names with one another.

The seven of us: Kipling and me; Susan; a woman named Milly whose mother had lived with her in a confused state for six years and her teenage daughter; Roger whose father was “off his nut” and whose wife couldn’t attend that night because she was home caring for his father and their children; and Evelyn, a middle-aged woman whose husband was newly diagnosed.

Later, I would realize our group was representative of caregivers: mainly middle-aged women struggling to hold together and manage marriages and growing children, jobs, and at the same time trying to help a relative who was helplessly succumbing to dementia. Pulled in several directions with few options.

Susan told us our small group was unusual because statistics confirmed that in the United States the majority of Alzheimer’s patients were women, whether it was because women typically lived longer than men and had more “opportunity” for the disease, or whether they were physiologically more predisposed to Alzheimer’s. Our little band represented more male victims than female.

The meeting was quickly dominated by Evelyn. (more…)

Chapter 9

June 3, 2014

Tags: Chapter 9

ALL OF US AT THE SAME TIME

©Jo Dereske 2014

Chapter 9



Susan


Susan Oyler was a petite, pale-eyed blonde with fragile skin. She looked twenty. “So what have we got here?” were the first words out of her mouth when I opened the door onto the front steps of the little house. She’d left her jacket in her car and instead of lugging a briefcase, only carried a baby blue purse.

Within moments I was pouring out our problems: Louise’s depression, her unreasonable anger, Mike’s incontinence, their mutual befuddlement and the way they escalated each other’s confusion, our own frustration and inability to ease their lives as effectively as we’d hoped and wanted to.

I didn’t need to explain the fine details; she comprehended exactly what we were talking about. Her answers were clear and pointed – and practical, the brand of practical that made me shake my head and ask, “Why didn’t I think of that?”

“Maybe your aunt doesn’t want you to fix her problems; maybe she just wants you to hear them.”

“What does it hurt if your uncle sleeps in his clothes once in a while?”

“Let her win in an argument, even if she’s wrong. She’s only trying to hold onto some semblance of herself. She needs to be right."

“They’ll mirror you. If you’re upset, they’ll become upset.”

“Don’t ask him if he wants a bath. That’s too complicated a procedure for him to understand anymore. Draw it and tell him it’s ready. Talk him through the steps.”

Susan recommended a book titled, The 36-hour Day, which I would mail order from Grand Rapids and which was destined to become well-thumbed and dog-eared, always close at hand.

“What about the legal guardianship issue?” I asked.

“That’s immaterial as far as my helping you,” she said tersely and I recalled my phone exchange with her receptionist, “but your brother should consider it for your uncle’s protection.”

While Louise had assigned Ray durable power of attorney, nothing legal had ever been done for Mike. Susan explained that in Mike’s current state, no one was responsible for his health care. If he were struck by an emergency illness, his treatment would be taken out of our hands. Legally, he shouldn’t even see the doctor without a legal guardianship, and since we were nieces and nephews, not children, it was important to have the legal right to continue providing care for Mike.

“I’ll go meet them now,” Susan said, and when I rose to accompany her, she held up her hand. “I’ll go alone.” She didn’t take her purse, not even pencil and paper. (more…)

Chapter 8

May 27, 2014

Tags: Chapter 8

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 8




Betrayal or Common Sense?


I learned that an old friend of Louise and Mike’s was living in care facility near Ludington, 15 miles away. Meadow Manor had a sterling reputation, reportedly light and attractively furnished, with a high staff-to-resident ratio. Without telling Kipling or discussing it with Ray and Barbara, I called the director of Meadow Manor.

“They’re not ready yet,” I told her, “but I’d like to bring them in to visit a friend. Maybe someday . . .” I trailed off, feeling the traitor, unable to look out the window toward Louise and Mike’s house as I spoke.

She understood immediately. “Why don’t you drop by alone to view our facility?” she suggested. “I’ll give you the grand tour.” And then she startled me by inviting me that very afternoon.

“So soon?” I exclaimed, and she laughed.

But I went, in a stew of apprehension and guilt. I was only looking, I told myself. Meadow Manor was light and cheerful. Instrumental music played quietly enough to be unobtrusive. Yes, some “guests” slumped in wheelchairs, a few stared in confusion, others appeared content: laughing and lively.

The director proudly showed me the dining room where a chair exercise class was being conducted to rocking 1950s music, the library and lounge, the kitchen facilities. She assured me that married couples could share a room and they were prepared to handle Alzheimer’s patients who weren’t dangerous or too disruptive.

Around us the cheery voices of staff called patients, “Hon,” or “Sweetheart,” raising their voices to be heard. I had a mental flash of the expression on Louise’s face if she were called “Honey.”

The director showed me to the room of Bernice, the long-time friend of Louise’s who sat in a recliner watching a game show. A necklace of amber – the Lithuanian woman’s favorite gem – circled her neck. One wall of her room was dense with photos from her long life.

“Bring Louise and Mike to visit,” Bernice invited when I explained my connections.

“Does she still braid rugs?”

“Not so much anymore.”

The next day, when Louise and Mike were dressed, I said, “Don’t forget, we’re visiting your friend Bernice today. Kipling’s warming up the car,” sweeping them along into coats, finding gloves, keeping up a light chatter that deterred them from asking too many questions or refusing to go. I kept my eyes averted from Louise’s, certain she’d glimpse my betrayal in them. (more…)

Chapter 7

May 19, 2014

Tags: Chapter 7

ALL OF US AT THE SAME TIME

c Jo Dereske 2014


Chapter 7



Time


Just after dawn, I entered Louise’s house to make coffee and set out breakfast before she and Mike rose from bed. But Louise was already sitting at the table in the gloomy light, staring down at her hands. I turned on a light and guardedly sat down.

“How are you feeling this morning?” I asked.

“John and June are so thoughtless.” Crumpled tissues covered her placemat. Her eyes were wet as if she’d been crying.

She was talking about my father and mother. My father, her baby brother, had been dead for eleven years. My mother, had moved to California to assist her ill parents, and across the country my mother and Louise maintained a gentler, closer relationship than they’d managed when they lived three miles apart. “I’ll fix the coffee,” I said, hoping to distract her. “Would you like a piece of toast?”

“I thought they’d take us out for breakfast,” she continued in a querulous voice. “Anyone else would have, but I ended up making them breakfast.”

She was so outraged my curiosity got the best of me. “What happened?”

She was only too eager to share. It might have taken place yesterday. “Mike and I asked them to stand up for us. We were married right here in this house. I hoped they’d take us out for a celebratory breakfast. But no, they never offered. I was a new bride and I had to work, cooking everyone a big breakfast while they all sat around and celebrated. No one even offered to help. Thoughtless.” And her hands rose to her rigid mouth.

I knew this story and even though I was only four years old at the time, the memory was vivid. (more…)

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