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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.

Please join me. I invite you to comment and share your own experiences.

ALL OF US AT THE SAME TIME

Chapter 23

September 9, 2014

Tags: Chaptr 23

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 23




Realities


The very next morning after Louise’s comment that life was more interesting because you knew you had to die, I fixed their coffee and left notes while they slept, as usual, then returned to the little house to work on my computer in my corner of the entry.

I looked out the window at ten, about the time I usually returned to their house, to discover Mike shuffling up and down the driveway, wringing his hands and talking to himself. I ran outside and caught up with him, matching his steps. He couldn’t express what was upsetting him, but jerkily waved toward the house, gasping as if his chest were too shallow for deep breaths. I hurried into their house, fearing the worse, Mike at my heels.

On the sleeping porch, Louise still lay in bed, eyes closed. She hadn’t got up for coffee or breakfast. Her breathing was slow and peaceful, a sleeping woman’s even inhalations. I felt her forehead. No fever. She grunted when I asked her if she’d like coffee and I let her sleep, surmising she’d had a restless night.

She barely slitted her eyes when Meals on Wheels arrived. At twelve-thirty when I tried to wake her she mumbled, “I’ll get up soon,” the same at one and one-thirty. She lay peacefully on her back, not moving. Mike paced the house. "What the hell's wrong?" he blurted, rubbing his hands together, rocking himself in obvious fear, before slipping into incoherency.

Kipling had gone to town, so at two-thirty with Louise still lying in bed, I phoned Ray. He arrived in ten minutes and tried to wake her up but she opened her eyes enough to recognize him, smiled, and immediately resumed sleeping. What should we do? We'd talked about this possibility, of letting her slip away. Was that what was happening?

But it was so against human impulse, to stand idly by. At three-thirty, when Louise still hadn’t risen from her bed, Ray called Barbara at work and she arrived with all her nursing knowledge. Louise's pulse was barely forty. Where Ray and I had failed, Barbara was able to get her up and out of bed. Louise was confused and husky-voiced – and ravenous. “I enjoy my food,” she commented between bites of leftover lasagna.

By evening she was herself but we were all rattled. Louise was adamantly opposed to any kind of heroic efforts; years ago she’d had her lawyer draw up a living will, and had clearly expressed her desire to die at home. But could we stand by if she was in pain, unconscious? Just observing? At what point did we take her to the hospital, if at all?

I called the doctor and explained her deep sleep, the low pulse. “Bring her in,” he told me.

She refused – no surprise, promising to go “tomorrow.” She was aware that "something" had gone on so I described again her deep sleep and low blood pressure.

"What would you like us to do if that happens again, Aunt Louise," I asked. "Should we call the ambulance or the doctor?" I knew her wishes would countermand any living will.

She thought for the flash of a second. "Call the undertaker."

While I fixed her a cup of green tea she said, “It’s nothing to die. I watched my husband die. You just close your eyes and click, you’re gone.”

I was intrigued. A story I didn’t know. I opened my mouth to ask more and saw the warning on her face. Let it rest.

Mike was still agitated and had a renewed distrust of us, connecting our presence with Louise being ill. At lunch, the door was locked but when I returned a second time, Mike stood in the open doorway, smiling. Of course, I did have a plate of just-baked peanut butter cookies in my hand.


1932 A horrible letter from Billy. He found out. I’m glad I was good in many ways and didn’t go too far. I’m a jackass and no more of that for me, I promise!


Again the next morning, we couldn't wake up Louise. I took her pulse and found it once more hovering near forty. I forced her to sit up which she reluctantly did and then I led her by the hand to the kitchen. At first she was groggy and confused but after a half hour became happy, even slightly manic.

"I had a dream that wore me out," she told me. "I dreamed I was back on the farm washing clothes under the big maple and I wanted to quit but Mother kept bringing out more clothes for me to wash so I had to keep going."

I felt chills at the back of my neck.

The nurse, Roberta, stopped by before Louise's was due at the doctor’s. We’d planned Roberta’s visit as a maneuver in our battle plan to “encourage” Louise to keep the appointment. When she was reminded of the impending visit, Louise cried and declared she wouldn't go, she'd never go; doctor’s visits were “an intrusion,” and the nurse was “a nuisance.” She believed it was nighttime and no one had brought her any food; we were “starving” her.

Roberta calmly agreed with Louise, took her vital signs, and phoned Doctor Hoffer. He wanted blood tests and scheduled an EKG. Her pulse was 48, her blood pressure high. "If this keeps up she'll probably slip away in her sleep," the nurse told me in an aside.

Louise endured the tests as if she were a sleepwalker. The EKG showed that the only option was open heart surgery, which Doctor Hoffer felt Louise couldn't survive. A pacemaker wouldn't help. "It probably won't be long," he said. "Six months would be optimistic, definitely not a year. Make her as comfortable and peaceful as possible. Let her sleep all day if she wants. She's earned the right."

To Louise, Doctor Hoffer, who’d once coolly asked her if she knew who he was, said, with great generosity and warmth as he held her hands in both of his and gazed into her eyes, "Louise, you have a sick heart. I want you to relax and take it easy."

"Well, what else can I do?" she retorted.


1932 Billy found us two rooms on East 62nd Street and I came back to Chicago. It’s April 1 and Billy hasn’t worked one day this year, not real work. I get so nervous worrying.


When Ray talked to Louise’s lawyer about her weakening situation, he advised Ray to make Louise’s funeral arrangements. Funeral arrangements! It was a hard reality but he and I dutifully consulted the funeral director at the chapel from which three generations of our family had been buried. Louise had directed in her will that there be no funeral service. Plus, she wanted to be cremated. Neither of us could recall a single dead relative who’d skipped out of a funeral or been cremated. Viewing nights, rosaries, funeral masses, cemeteries, tombstones,; it was all part of the only package we knew.

The funeral director knew our family and inquired after our brother, our cousins. “I remember your father on that fancy motorcycle of his.” He gently led us through the complex formalities of death, existing even without a cremation or funeral. A kind of numbness settled over us. We planned, saying the words, making the necessary decisions; all the while I imagined Louise fuming over what we were doing.

From memory the director described the style of tombstones installed on the family plot in Riverside Cemetery. Ray and I exchanged quick glances; was this a sales tactic or was he really able to remember individual tombstones? On our way home we stopped by the cemetery just to see if he was correct. He was.

Riverside Cemetery covered land near the river, neatly divided into Catholic and non-Catholic quarters. The Catholic side occupied a high and sandy plain, the non-Catholic rolled beneath oak trees and pines along the Pere Marquette River. Driving through the cemetery and reading surnames on tombstones was a brief and disorienting trip through the past.

Later in the day, the funeral director phoned Ray to say he’d checked into the cemetery lot where Louise's first husband, our grandparents and infant sister were buried. “Back in the 1940's,” he said in a bemused voice, “Louise bought twelve plots.” After our initial surprise we realized it was perfectly in keeping with her penchant for buying in quantity.

At the Alzheimer's Support Group, Susan suggested that we assure Louise that Mike would be taken care of, that perhaps she was clinging to life because she was worried about him and it might set her mind at ease. She also offered to look into care facilities for Mike.

Every time I entered Louise's house I suffered a stab of fear. In the mornings I crept to the sleeping porch and watched her chest for movement, my own breath held. If she took a nap I studied her before I called her for dinner.

"There's a little girl inside her who wants to go home," Kipling said.

I thought about that statement. When my son was born, he had a lung condition that the doctor explained was similar to “two wet panes of glass stuck together.” The doctor told me he wouldn't live and gave me medication to dry up my breast milk. After my son spent two days in an incubator in pediatric intensive care fighting for every breath, still in critical condition, my inability to help, to share my own strength, culminated in my going off the medication and buying a breast pump to express milk every four hours.

I poured that milk down the drain but it stimulated my milk production. I would have breast milk when he recovered. When, in my mind, not if. Besides my mother-desperate prayers, it was all I could think of to do.

With that same sense of helplessness, I decided to take a drive for Louise. She completely and adamantly refused to step inside the car, so I imagined her sitting beside me as we revisited her past.

I followed the secondary gravel roads to my grandparents' old farm, and as I grew near, I approached it in the lives of so many people: as a little girl in the back seat of our car, as my father on his way to help his father bring in the hay, as Louise on a Sunday afternoon. Passing O'Brien's old house a mile from my grandparents’ farm I expected their long-dead black-and-white collie to burst onto the road and chase the car while the Dad laughingly opened his door, and the dog, knowing that game, anticipated it and jumped clear.

All their ghosts, like filmy layers if we could only peel away the present. In the barnyard, with the horses, at the watering trough, making cheese, putting up loose hay. The sense of so much life and passage of parallel time was dizzying. If it could be gathered up and sorted out again, they'd all be there, all the people we loved, in all their flawed beauty and perfection. I could sense them.

All afternoon, Louise sat listlessly in the living room wrapped in an afghan, her feet on the ottoman, unable to rouse herself for more than a few seconds. Either Kipling or I remained in the house, watchful, monitoring her, aware that her time was growing short, that perhaps death truly was approaching.


1932 I started work as a salesgirl. Billy is doing a small job for Jimmy. Boy, this is going to help out beautifully. I’m not so nervous when Bill works. Received food from home.
Solemn May Novena began tonight. I went. Billy went to a meeting.



Next Tuesday, Chapter 24: The Revolt

Chapter 22

September 2, 2014

Tags: Chaptr 22

ALL OF US AT THE SAME TIME

©Jo Dereske 2014

Chapter 22



An End to Reading


Louise had always been a ravenous reader. She often talked about sneaking in reading when she was a girl while she was supposedly doing chores, or how she haunted the library in Chicago. She cut out poems and articles that stirred her and stockpiled them around the house. She’d been a faithful newspaper subscriber and magazine reader.

Now she claimed her glasses weren't strong enough for her to read. She’d been to the eye doctor only a month earlier, the optometrist she’d been seeing for years and had known since they were teenagers. “My, you’ve gotten old,” she’d blurted in shock when she saw him, and when he advised her she needed a new lens prescription, she said tersely, “I’ve always believed glasses are a bit of chicanery.”

"How about if I find you a large-print book at the library?" I asked.

"Like what?" she challenged.

I suggested Reader's Digest, thinking the short articles might hold her attention.
"Personally, I think Reader's Digest is boring," she sniffed. "I'd prefer a sexy novel."

At the library I examined the large-print collection. No sexy novels but I did find a humorous Gorge Burns book so I checked that out.

Louise thanked me and set the book on a coffee table.

And that was that. She wouldn't let me (more…)

Chapter 21

August 26, 2014

Tags: Chaptr 21

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 21



The Missing Diamond


My mother left Michigan, returning to California to help care for her parents, and that afternoon as I completed a circuit of my trail through the woods, noting the fading of green leaves as summer wound down – way too early, I felt – I spied Louise sitting on the patio holding a tissue to her face.

"Is everything all right?" I asked, sitting in an orange metal lawn chair beside her, thinking she must be missing Mom, her “Junie.”

"I just wish you were my daughter instead of my niece," she said as she dabbed her eyes. She’d never expressed such a sentiment and I was momentarily struck speechless.

"I love you like a daughter would," I told her, "and you are my godmother."

"It's not the same."

I realized then that in my heart of hearts I was grateful to be her niece rather than her daughter. She was too powerful of a woman to have as a mother and I suspect that any daughter who wasn’t born with the same strength as hers would be turned into a rebellious hateful child – or crushed to a weak dishrag of a woman.

But as a friend! Louise had given me (more…)

Chapter 20

August 19, 2014

Tags: Chaptr 20

ALL OF US AT THE SAME TIME

©Jo Dereske 2014

Chapter 20




Relapse


When Susan explained the details of Mike’s guardianship to Louise, she’d also mentioned the likelihood that Mike had Alzheimer's, and even though before she became ill, Louise knew Mike had been diagnosed with Alzheimer’s, it was now news to her. "Do you think Mike has Alzheimer’s?" she asked me.

"I don't know," I told her, sensing the obsessive edge to her question and choosing to try to redirect her instead.

"I don't have Alzheimer’s," Mike said. "God."

I continued to re-explain the benefits of Mike’s guardianship, hoping to focus her on that less explosive topic.

"How will Ray pay the bills?"

"Remember," I told her, "You gave Ray power of attorney years ago. That was very wise of you to do that."

Aunt Louise looked up at the ceiling. "Thank you God for Ray."

When I told Ray, he grinned in embarrassment and said, "My shoes just grew two sizes."

But in the coming days, a familiar tangent developed that we were helpless to stop. Louise grew tormented by the idea that Mike had Alzheimer’s. She couldn’t let it rest. She was both terrified and angry (more…)

Chapter 19

August 12, 2014

Tags: Chaptr 19

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 19



Legalities


Susan counseled Ray through the weeks of filing for Mike’s guardianship. Years earlier, when Louise had designated Ray as her legal representative and given him power of attorney, it had been a simple move on her part. She asked Ray, he said yes, and she made the arrangements with her lawyer. Ray had hardly thought of it again, considering it a precaution on her part, and its implementation a distant future, at best.

When it was necessary for Ray to step in for Louise, the legalities were in place. It was a seamless transition.

Now we learned how time-consuming, tedious, and hoop-filled the same process was when the person in question was no longer able make his own decisions. The measures existed to protect people like Mike, we understood that, yet dealing with courts, lawyers, social workers and reams of paperwork left an ashy taste, as if the whole process had gone from a loving family’s concerns to a legal three-ring circus where we were being charged with proving our innocence. (more…)

Chapter 18

August 5, 2014

Tags: Chaptr 18

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 18




Drains and Vegetables


Without warning, the plumbing in the little house ran amok. The drains bubbled when the toilet was flushed. The bathtub wouldn't empty. The toilet backed up. Dish water swirled but didn’t go down the drain.

"Maybe the septic tank's full," Ray said when he stopped by. “We’ll have it pumped.”

"So where's the septic tank?" Kipling asked.

“Out there.” Ray waved away from the house. Mike had built the little house – there were no printed plans – but when Ray asked him about the septic system, he began rocking in his chair, unable to answer. (more…)

Chapter 17

July 29, 2014

Tags: Chaptr 17

ALL OF US AT THE SAME TIME

©Jo Dereske 2014

Chapter 17




The New Doctor


Convincing Louise to keep a doctor’s appointment was always a struggle and I dreaded this one because the woman doctor she’d liked and trusted had moved out of the area, and this would be her first consultation with the new doctor, a man, Dr. Hoffer.

“Call and cancel,” she ordered me. “I’m too unsteady on my feet to go.”

“We may as well go and get it behind us,” I told her. “Besides, it’s a nice day.”

“I’m not going.”

“All right,” I affably agreed. “You’ll lose the money, though.”

“What?”

I shamelessly lied. “The appointment’s already paid for. If you don’t go, the doctor will be paid for nothing.” (more…)

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, (more…)

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…)

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