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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.


Chapter 22

September 2, 2014

This article's post date is in the future. Even if published it will not be visible publicly until that date.

Tags: Chaptr 22


©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 read it to her. She couldn't remember she had the book and she couldn't focus her attention on reading even a paragraph. The newspaper, which was still delivered every day, went unfurled. A world without reading felt a true tragedy. I’d grown up in a family of mad readers and common statements ran along the lines of, “Just one more page,” or “I’ve never been there, but I’ve read about it.”

I was writing the first book in the Miss Zukas mystery series and it was due to my publisher in four months. I was a slow writer, fast to create my first draft so the “bones” of the story existed, but tedious to the point of obsession, in my rewriting, sometimes rehashing portions ten or more times, and like most writers, never quite satisfied, more surrendering my manuscript to my editor rather than submitting it.

My brilliant idea, I thought, was to call upon Louise’s generosity. I asked her for help. Would she give me her opinion if I read portions of my new book aloud to her? I needed “fresh ears,” I told her.

She was doubtful but as always, when a favor was asked, willing. I was nervous that she might be offended that I’d snuck in actual family details, not to mention giving the main character the name of Zukas to honor her.

“This isn’t a true story, Aunt Louise,” I warned her.

“I don’t care whether it’s true or not,” she said, “as long as the story is real,” a comment I would always keep in mind during my writing career, and in fact print in block letters and pin to my bulletin board above my desk.

So I read to her from my manuscript, watching her face for the raise of her eyebrows when a sentence didn’t quite work, or grateful when she laughed aloud at what I hoped was humorous. And especially alert when I noticed her attention wandering, a sure sign I needed to tighten my writing.

Reading aloud helped me clarify niggling problems I was having with the writing, and Louise’s responses were invaluable in honing the story.

I’d return to the little house, rewrite the portion, and the next day return to read it to her again. Rarely did she remember having already heard the passage, only once saying, “This sounds familiar. I hope you’re not copying another author’s book.”

1932 New Years Day. I do hope this year is much better than last year. Employment is tough for everyone and there are long lines of hungry people at the church. I sure worry a lot. Terrible cold but Billy marched me out to spend all day with Al and Sylvia. We made good out of not much.

I found a note on Louise’s placemat early in the morning. It was written on the back of an American Cancer Society appeal envelope in Louise’s wobbly handwriting.

3:00AM Louise was here and left. She will be back. Louise

I rushed to the sleeping porch. Both Louise and Mike lay peacefully sleeping. Nothing in the bedroom or house appeared out of place or amiss. What did the note mean? Had she actually left the house during the night? Had she had a dream? We were so attuned to their sounds on the monitor that any unusual noise, like running water or an opening door or something falling, woke us up.

“Maybe she was making a joke,” Kipling suggested when I showed him the envelope, which sounded unlikely to me.

I worried. They sat in the back of my head, like my children did: always present, a low-level current poised to flash to life like lightning.

Mike now left the farm more than Louise. As his disease progressed, his lifelong tendency toward solitude slipped away. Barbara took him grocery shopping, making it an outing where he pushed the cart while she filled the basket with items that sparked his interest: bright red packages of coffee, bok choy, a twenty-five pound bag of potatoes, and of course, gigantic packages of vanilla sandwich cookies.

Every week or two Kipling drove Mike to Tom the barber's in Scottville for a shave and haircut. Tom had offered to stop by the house and cut Mike's hair – but this was a foray that Mike eagerly agreed to. The town had once bustled and been crowded with cars and competing stores. Now, like many small towns, it faded. Dollar stores and consignment shops poised at the edge of town, waiting for long-time stores to fold.

Whenever Kipling announced they were going to Tom the barber's, Mike called forth old routines and spruced himself up, easily accepting help dressing and choosing his clothes, ready and waiting in the driveway before Kipling could back out the truck.

“I’ll come with and make sure he does a good job,” Louise teased him.

“No women allowed,” Mike told her firmly.

It was a men's day out – in the truck, not the car – and Kipling said Mike was always appropriate. Tom was aware of the situation and had known Mike for thirty years. The barber shop was still familiar and safe to Mike and he held the satisfaction of his trip for the remainder of the day, smoothing his hand over his chin and head, smiling.

1932 Thunder and lightning in winter. I’m always worrying about money. Billy tells me he’ll take care of it but if he breaks his promise I’ll go home. He’s started going to meetings again and I’m afraid of what will happen. Big Mike loaned him $50. How will we repay it, I want to know.
Tony and his girl came over and stayed until after midnight. I went to bed and they partied.

Roberta, the regular nurse who Louise had developed a teasing, mostly cooperative relationship with, took a two-week vacation. She didn’t mention her impending absence to Louise, knowing it could launch another traumatic episode.

The substitute nurse, whose name was Phyllis, was the first visiting nurse I’d seen wearing a uniform: a crisp blue smock and pants. She entered Mike and Louise’s house carrying a black briefcase and glanced around at the furnishings,. “Wow,” she said in a hearty voice. “You’ve sure got a lot of antiques here. I’d like to back a truck up to the front door and load up.”

Whether it was that comment or because she wasn’t her usual nurse, Louise and Mike took an immediate dislike to her.

Louise kept her arms close to her sides, staring at the nurse. “Your visits are an imposition to me.”

The nurse bristled. “Well, you have to put up with them if you want to stay in your home.” To my ears, her voice sounded unnecessarily harsh.

Louise shrieked when Phyllis inserted a needle in her arm for a blood draw. Mike, who’d been sitting in the living room, rushed into the kitchen, his face red.

“Leave her alone,” he shouted at the nurse. “Take mine instead. Leave her alone.”

Louise gazed up at him. “You’d do that for me, Mikey?”

“Yes,” he asserted. “And I always will, too.”

Louise submitted and held her arm steady for the nurse, her eyes soft on Mike.

Phyllis punctuated nearly every comment with a nervous giggle, and after Mike’s initial outburst, he refused to speak again, retreating to the living room, and whenever Phyllis laughed, he imitated her in a high falsetto we all could hear.

“Do you think I should be in a nursing home?” Louise asked Phyllis, as she often did any of the social services people.

“Not as long as you have a caregiver here,” Phyllis said, nodding to me.

Louise looked at me in shock, narrowing her eyes in suspicion and covering her mouth. I could see her thinking: Her niece, her godchild she’d allowed to live in the little house, was her Caregiver?

I seethed. Every nurse, careworker or volunteer we’d met had been helpful and respectful to Louise and Mike despite Louise and Mike’s unpredictable – and sometimes trying – behavior. We felt they were all pulling for Louise and Mike, and for us, too, and we were boundlessly grateful. Louise and Mike might not be paying out-of-pocket for these services but they were tax-payers, life-long community members. Should we accept or expect anything less than first-rate treatment, paid for or not?

I was a bona fide member of my father’s speak-before-you-think family and struggled against an outburst. I reminded myself that Phyllis would only visit Louise and Mike once more while Roberta was on vacation. I wanted to maintain a good relationship with all of social services for Louise and Mike’s sake. So should I overlook what struck me as disrespectful behavior?

No, I decided, I couldn’t. When Phyllis had packed up her nursing supplies and said goodbye in Louise’s and Mike’s direction, neither of whom answered, I walked out to her car with her into the crisp air, a smile frozen on my face and mentally searching for foreign discreet words.

“Thanks for coming,” I began. “It must be hard to fill in for someone else when you haven’t had time to get to know the patients.”

She looked at me sharply. “Not really. We all have the same routines.”

At that moment, Morris twisted around my legs. I leaned down to scratch his ears, and give myself more time to compose my words.

“My aunt’s confused but she’s actually very sharp. I think you upset her by saying you’d like to steal her antiques.” Not exactly the most subtle.

“It was a joke.” Phyllis dropped her briefcase on the back seat of her car and slammed the car door.

“She doesn’t understand joking as well as she used to.” I explained, thinking that was a pile of rot. Louise still “got” jokes before most people. I was on a roll so I continued, also telling her that calling me Louise’s “caregiver” upset Louise’s and my fragile relationship.

Phyllis nervously giggled but she appeared genuinely puzzled by my comments.
I embellished what I’d already said, omitting that I also felt her attitude to Louise and Mike was cold and perfunctory. After a few moments of silence while she stood beside her car, her lower lip between her teeth, she heaved a sigh and said, “I’m sorry if you’re upset.”

I recognized that breed of apology, that abdication of responsibility, the surety she’d done nothing wrong; that it was all in the way I’d perceived her professionalism. In other words, my problem.

There was nothing more to say that would soothe our differences, and we coolly said our goodbyes and she drove away.

The following week, as I nervously awaited Phyllis’s arrival, prepared to hulk over her visit with Louise like an ornery watchdog, the phone rang. It was the nursing office, telling my Phyllis wasn’t feeling well and would I like to reschedule her for Friday?

“That’s all right, Roberta will be back on Tuesday,” I told the receptionist. “We’ll wait.”

1932 Billy out every day. I’m left alone all by my lonesome. I played ping pong at Olga’s and we went to the show: “Delirious.” I bought a few bargains for mother.

Cauliflower clouds ringed the horizon, billowing into the blue sky. The sun shone and the temperature hit eighty degrees, but portents of the changing seasons were definitely in the air. The bountiful bean plants finally collapsed and browned, I noted with relief. The flowers on the trumpet vines formed banana-size pods, pumpkins were oranging up. Squirrels dashed up and down the trees with real purpose now, and the birds gathered on the wires, their flocks burgeoning from ten to fifty and more. Summer was surrendering its long lazy light to autumn clarity.

"I hate it when the seasons change," Louise lamented, always more aware of the subtleties of nature than what year, month or day it was.

Annually, when summer changed to autumn, Louise was prone to slip into “the blues,” that dragged on until late January when the days finally began to noticeably lengthen again. She wasn’t the only one in cloudy Michigan – or Washington state – who followed after the darkening days in their hearts, and I’d often thought that hibernation should be a viable option for some people.

We scrambled for ways to keep her interested. I coaxed her into a drive to Lake Michigan, thinking the sight of the pale beach sand and blue water would make her forget it was autumn.

But I’d forgotten it was past Labor Day.

On the Tuesday after the three-day Labor Day holiday, the City declared summer defunct and began erecting snow fences across the beaches. Ugly green wire-and-slat fences stretched in rows like World War I barbed wire, parallel to the shore, closing off the park and beaches.

The theory was to be prepared; you never knew when the weather might change.

As we pulled into the park, Louise saw the fences and stared out the window. “Are they mixed up, or am I?”

“I think they’re jumping the gun,” I told her. “It’s as beautiful as summer out there.”

“But it’s not.”

A young man, tall and broad-shouldered, slipped around the end of a slatted snow fence and kicked through the sand toward us.

“Is that Johnny?” Louise asked, sitting up and peering curiously through the windshield.

He did look like a young version of my father and when I didn’t answer her quickly enough, she turned to me, her face flushed. “Take me home,” she ordered.

1932 I am at home again. Dad and Frank met me. Billy and I had to give up our apartment again. I don’t want to know what he’s doing while I’m gone. He hasn’t worked one day all month. Stella came home but she’s a little too noisy so I went to the fields with Dad and helped burn wood. Snow and wind. Bitterly cold.
We had a letter from Tofelia. She’s going to unite with Gordon in Canada. Cookoo. Frank, Stella and I went to a dance at Bonnie Belmont. What a crowd! We all went to mass in the morning.

"Are you going to stay here this winter?" Louise asked completely out of the blue as we walked arm and arm viewing the late roses and asters in her gardens.

"We're very happy here," I told her, "and we love our neighbors."

"I have better neighbors than you do," she teased. Then after a pause, asked, "Will you stay here until I die?"

No matter how much I wanted to, I couldn't promise that. In January, we’d be up against another deadline. Kipling’s leave of absence would turn into unemployment. We’d only skirted around the necessity of moving Louise and Mike into a care home. But soon . . .

"I hope you live a long, long time," I told Louise.

"But not forever," she added, shaking her head wearily, "not in this state." Then she grinned and added, "Living forever would be tedious. Knowing we have to die keeps life interesting."

1932 Billie came to Michigan for a day. I wish he could have stayed longer. I’m so blue without him. One of Dad’s pigs had 17 piggies! The weather’s been stormy. The road in front of the farm is very bad.

Next Tuesday, Chapter 23: Realities

Chapter 21

August 26, 2014

Tags: Chaptr 21


©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 a photograph of herself taken when she was twenty-one and living in Chicago. Her eyes confronted me: bold, questioning. The corners of her mouth lifted slightly, as enigmatic as a Mona Lisa, if more sardonic. Her hair was curled and crimped into the height of Depression-era stylishness. The photo sat on the shelf above my desk, next to the oak gall wasp ball, and I found myself glancing at it several times a day. I wish I’d known her then. To have been her contemporary, I suspected, would have been an adventure, never boring. It was there in her eyes: nothing is impossible.

It was a mystery why certain people became unattainable ideals, as Louise had always been for me. Why on earth did I struggle to emulate her? Why, over my life had I looked to her as an example? She was unhappy much of the time, obsessive, compulsive, domineering, drawn to sorrow and depression.

But her spirit was indomitable and her intellect, even in her current state, awesome, her wit breathtaking. She was an unfathomable rich soup of strength, vulnerability, creativity, and generosity; depths and contradictions I couldn’t fathom.

I was convinced if I could be like her, possess that sharp sense of life and complex character, I would be satisfied. But also true, the price of emulating Louise, meant to never be satisfied, maybe even to never be happy.

1931 I had my teeth fixed so my smile is now nice and shiny! Went to the south side with Billy, then Sylvia and Al and Tom came over to play cards. It was a beautiful day for this time of year.

It was just a plain day, with plenty of worries to top everything off. Tony brought over his new girlfriend. Money is tight, either here or not here. I worked for Mrs. B for two days and made a little money. Billy says he’ll make it up to me. But how? We went to confession and Holy Communion. Billy is keeping his promise and looking for a real job.
I went to Novena of the Little Flower and prayed for Billy to get a real job. I’m afraid I’ll go nuts if I’m not careful. What can I do but worry and pray? I’m so discouraged.

Coming around the side of the house after weeding asters, I nearly stumbled over Louise on her hands and knees in the grass. My heart skidded.

“Are you hurt?” I asked, dropping my hoe and kneeling beside her. “Did you fall?”

“I’m looking for it myself.” She sounded angry, controlled. She separated blades of grass, feeling around the roots, her face close to the ground.

“What did you lose? I’ll help you find it.”

You lost it,” she charged, casting a look at me that set me back on my heels.

“What is it?” I asked again, more warily now.

“My diamond ring. You threw it out in the dishwater.” She raised her swollen, arthritic left hand to show me. There was no ring on her finger, true, but I couldn’t recall ever seeing Louise wear a ring. Her knuckles were too swollen to slide a ring over.

I was silent, thinking wildly what to say. Denying she had a ring would only intensify her certainty that I’d thrown it out.

“Are you sure it was in the dishwater?” We carried all her dishes back to the little house to wash and hadn’t washed so much as a cup in her own sink in months, the only way we’d found to stop her from arguing with us to let her do dishes, knowing she couldn’t and if she tried, it only brought on frustration and sorrow that she’d lost that simple ability. She never seemed to notice us packing up dirty dishes into our wicker basket in front of her and taking them away.

That look again. “It slipped off my finger while I was washing cups in the dishpan and you threw out the pan of water.” She spoke slowly, patiently as if of course, I already knew what I’d done. How could her own niece be so dense? She resumed searching the ground, her hands sliding flat back and forth across the grass.

If I scrambled around on the ground searching, too, wouldn’t it reinforce her belief that I’d indeed thrown out her diamond? Would I be eroding her trust in me and make myself what she believed during her worst bouts of uncertainty and paranoia: a thief taking advantage of her?

That glance of suspicion frequently entered Louise and Mike’s eyes: why were we bossing them around? Why didn’t we go home? Were we after their farm, their money, their car? We couldn’t reasonably argue against their doubts, only wait for them to pass.

“Let’s go in the house and search the kitchen,” I suggested.

“I did,” she replied curtly. “It’s not there.”

“Would you like a cup of tea?”

“After I find my ring.”

She was doomed not to find a ring. The lost diamond was a story I hadn’t heard before and didn’t know what reality it was built on – or even if the basis had been a dream, or perhaps another woman’s experience that had been shared with her.

“What does the ring look like?” In my mind a plan was forming: a similar ring – or even the ring she was hunting for through the grass – might be in her jewelry box. If it were slipped out and placed in the grass for her to find . . .

“Simple. A gold band. A solitaire.”

My spirits rose. That sounded doable. If the ring wasn’t in her jewelry box, maybe we could purchase a similar one. The lost-ring story was entrenching itself in her mind and it would haunt her until we somehow settled the question.

Then she added, “My name is engraved inside it,” and realized what a cowardly subterfuge I was considering in my desperation.

I didn’t know how to solve this one. Louise and I rummaged through her jewelry box without finding a diamond solitaire. I searched the tangle of costume jewelry in her antique shop.

There was no ring. Off and on to varying degrees during the coming days, we’d discover her combing through the grass or feeling around the roots of flowers, once illuminated by the yard light in the middle of the night, brooding over my perceived crime of throwing out her precious diamond with the dishwater.

“You remember my diamond ring, don’t you Mike?” she asked, flexing her naked fingers.

“Diamond ring,” Mike dutifully repeated, and Louise flashed me a See, he knows, too look.

She related the story of my crime to the nurse who sympathetically assured me she’d witnessed similar – and worse – accusations “too many times to count,” and not to be bothered by it. “It comes with the territory,” she said.

The missing ring story would take weeks to fade from Louise’s mind. I knew I was innocent but still I suffered a wave of unfounded guilt when a woman Louise knew called and inquired with an edge of suspicion in her voice if I’d “ever found that ring you threw out in the dish water.”

1931 Billy found a job! But then he had a horrible cold and had to spend the day in bed. But he went to work doing hard nights. Emma and I went to an American Legion concert.

Only five days and Billy was laid off. More worries. He didn’t want me to go back to Mrs. B. I’d rather work like a horse every day than do nothing and have worries. I try to keep my nerves under control but they are slipping all the time. Billy told me he was going to the north side to see Tom Jones.

Mother sent a lovely fat duck for Thanksgiving. Sylvia and Al came over to share. I could forget the worries for a while. It’s heck to be poor but complaining won’t help. I read in the news that we are in a “depression.” It IS depressing. Hah!

Whenever Lithuanians gathered, there was bound to be music: singing, often an accordion, or piano, usually accompanied by food and alcohol. Mike had played a rollicking accordion, but music now held no place in their lives. Louise and Mike didn’t want the radio turned on; they didn’t watch television. We couldn’t coax them into attending any musical events.

“Did you used to listen to music?” I asked Louise.

The question seemed to startle her. “Of course. There was always music, especially in Chicago. We even used to go to Idlewild.”

“You did?” I asked in surprise.

Idlewild existed only twenty miles to the east of us, a former resort town created in the early 1900s for wealthy black vacationers from Chicago, Detroit, and the east. It may as well have been a million miles away when I was growing up.

Rumors, stories, and fact recounted a history of legendary jazz and blues music and musicians, nightclubs and roadhouses and a testing ground for Motown music. Idlewild was a booming center, especially between World Wars I and II, then slowly decaying until the Civil Rights Act of 1964 made Idlewild’s original purpose for existing redundant. It dwindled to abandoned buildings and memories, here and there a small clutch of resort homes.

What remained in the area was a shadow of a spontaneous music culture: blues, jazz, gospel. Ginger’s Roadhouse brought in live music, local bars hosted jam sessions.

Eddie Calhoun, the famous bassist who’d played with Erroll Garner, retired to Idlewild that winter and frequently jammed in local bars with musicians who came from afar for the chance to play with the legendary bluesman.

Louise nodded at my question about Idlewild and her eyes went distant. “Idlewild reminded me of Chicago. We went to the south side and sometimes Maxwell Street. It was a wild time: the speak easies and that blues music. I remember – ” She stopped and gave me a sharp look.

“We go to bars to listen to blues sometimes. Will you come with us?”

When a jam session was scheduled word would go out by grapevine and invariably Ray would hear and let us know when and where.

She adamantly shook her head. “No, no. I can’t fit into my dancing shoes anymore.”

1931 Received $5 from Mother and Dad for Christmas. I feel terrible blue that I couldn’t go home because we’re almost broke. Went to midnight mass and then we stayed home all day.

Evelyn didn’t attend the next Alzheimer’s meeting.

“Her husband was admitted to an Alzheimer care unit in Muskegon,” Susan told us as we waited to settle in, chatting, expectant for Evelyn’s arrival.

“But she’ll still come once in a while, won’t she?” Milly asked.

By this time, we’d claimed our chairs around the table, the same seat each meeting and Evelyn’s folding chair, across from mine, sat empty. Despite her rocky beginning, we’d all grown fond of Evelyn, appreciating her sharp wit and impetuous generosity. We were bound together by Alzheimer’s, its trials and challenges difficult to share with people who’d hadn’t been touched by its effects.

Susan hesitated, then told us, “She moved to Florida.”

“But he’s in Muskegon?” Milly’s daughter asked as if she hadn’t heard Susan correctly. Susan nodded.

We were stupefied. Evelyn had left her husband in a care unit in Michigan and moved to Florida?

As she often did, Susan used the situation as a teaching moment. “Don’t feel she’s betrayed him,” she said, exactly where I was heading. “We each cope with the disease differently. He’s in a safe place and she’ll be back to visit him.” I thought Susan made this last statement with less certainty, but she continued, “Evelyn worked very hard to keep her husband at home as long as possible, and she did a valiant job. And she did it alone, by herself, “she emphasized, glancing at Milly and her daughter, and Kipling and me, reminding us that we at least, were not doing this alone, that we had each other for support.

“But he’s her husband,” Julie said. “She made a vow.”

“Maybe this is how she’s honoring her vow.” Kipling, always kinder than me, offered, “by giving him professional care.”

Because some Alzheimer’s patients wandered or became violent, separate wings or specialized nursing homes were required for their care, homes where doors could be locked, the environment kept simple and low key, and the staff-to-patient ratio was higher. Muskegon had the closest such facility, sixty miles away.

Contrary to popular belief, Susan told us, most families struggled to care for their family members with dementia at home, often juggling aging parents with growing children. Care facilities were usually a last resort, after family caregivers were stretched too thin, when the situation demanded professional 24-hour care. Rarely was a nursing home confinement a decision made lightly and rarely was it made without excruciating guilt.

I struggled not to judge. Evelyn’s husband had disappeared from his body forever, certainly as the person she’d married and loved. He didn’t need her presence any more, not her personally. We’d watched the toll his care had taken on Evelyn, how it had nearly broken her own health.

What remained for Evelyn’s husband was humane care – that was the bottom line. That was all that lingered of his future: a hopefully comfortable and safe ending. In my darker days, didn’t I feel overwhelmed and yearn to escape? Wasn’t I hoping for death to avoid a similar fate for Louise and Mike?

It was a reasonable decision – I knew that intellectually – but it still made me uneasy.

But there was a new member of our small sad club. Another middle-aged woman who twisted a tissue in her hands. “My mother forgets my name,” she told us. “And yesterday she thought my son was the paper boy.”

Milly and I exchanged glances. We were the old-timers now, the people with the experience, witnessing the sorrowful saga beginning all over again for another family.

New Year’s Eve. 1931 was a bad year for employment. I never worried so much as this year. Almost broke but I have more hope for the coming year. 1932! Also, //////// -- I’m sorry.

Next Tuesday, Chapter 22: An End to Reading

Chapter 20

August 19, 2014

Tags: Chaptr 20


©Jo Dereske 2014

Chapter 20


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


©Jo Dereske 2014

Chapter 19


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


©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


©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.”


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


©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


©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


©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


©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…)

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