You may bookmark this page or subscribe by using RSS. If an RSS icon isn't visible in the web address box on your browser, click here
Don't forget you can also read ALL OF US AT THE SAME TIME on your mobile device.

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 28

October 14, 2014

Tags: Chaptr 28

ALL OF US AT THE SAME TIME

©Jo Dereske 2014


Chapter 28



Note: This is the final chapter of ALL OF US AT THE SAME TIME. It’s hard to believe it's been six months since I began posting a chapter every Tuesday.
Nearly 3,000 of you have read these chapters. I’m deeply grateful for your many generous comments and shared stories. In one way or another, dementia touches all of us.
ALL OF US AT THE SAME TIME, slightly expanded, will be available as an ebook in November, 2014. I’ll remove these chapters during that time. Again, thank you, jo


After


With shocking swiftness, our lives returned to normal in Washington. We slid back into our routines, stunned at the ease of the transition, as if it should have been impossible to inhabit our old daily lives again, as if our year in Michigan would have marked us too deeply.

It was a giddy relief to see my children, to leave our house for dinner, a movie, or to visit with friends without worrying what was happening “across the driveway.” I relished the freedom, cherishing moments that were my own, thrilling at the simple act of making plans.

Yet, Louise shadowed my thoughts: was she comfortable, healthy? Was someone making her green tea? Was the nursing home staff treating her well, appreciating her sharp humor? I knew her too well to wonder if she was happy.

Ray and Barbara kept us apprised of Louise’s progress. Her memory continued to falter; she frequently obsessed over money. Where was Mike, when could she go home, and just exactly where was she? She sometimes turned on Ray, enraged he wouldn’t simply help her into his car and give her a ride home. She was perfectly capable of taking care of herself; who did he think he was?

Once, she managed to slip out of the nursing home and begin the fifteen-mile walk back to the farm. Frantic staff members found her resolutely marching along the busy highway a mile from the building, telling them, “You’re going to make me finish my sentence, aren’t you?” before surrendering and allowing them to assist her into the car for the return trip to the nursing home.

In between these sad moments, she appeared to live at peace: making friends, having her hair done, joking with nurses, and always, always, eager to pass judgment on the food.

I sent her cards and photos and small gifts, the occasional naughty card, which my brother said she most appreciated. Never flowers. She’d refused to allow cut flowers in her house, tersely saying, “They’re dead,” and demanding they be removed.

I telephoned her, but only once. She asked several times, “Now who is this again?” It was too confusing for her, and she’d never been one to enjoy phone chats, anyway. “I need to see a face,” she’d told me often enough.

The realization that the only way we could speak together again was to make the 2,500-mile trip back to Michigan caused so much sorrow that I found myself pulling out the diary I’d kept in order to enjoy a mental visit. The diary was a tumultuous read – over 400 single-spaced pages – often written several times a day, on my computer. It had been my solace, a safe place to vent my frustrations, sorrow, and anger, and of course the triumphs and happiness, the changing seasons. The diary documented an even wilder roller coaster than I remembered.

I read portions of the diary aloud to Kipling, and we often ended in silence, shaking our heads over our naivete, and yes, admiration for our family’s valiant efforts to help Louise and Mike. Also pride in what we’d all struggled to accomplish because we loved them.

Had our intervention made a difference? It no longer mattered. As Susan had often said: moments, not memories, and there had been a treasure of golden moments. Our mistakes were tempered by the strength of our good intent. We’d gone to the boundaries of our ability and then, with the help of others, discovered we could go even further. Watching Louise and Mike, we’d witnessed indomitable love, and how it could remain a permanent component of the heart, untouched by age and dementia.

I never forgot that Kipling and I were an exception, able to give a year, to buttress each other, to have family to support us, and also to support Louise and Mike, or even that Louise and Mike had each other. We weren’t alone, as so many other caregivers were, running up against limited and heart-breaking options for their loved ones with dementia.

My mother’s cancer metastasized, and as Louise had noted in a mixture of irritation and awe, she never complained, leaving us unaware of how grave her health had become. My sister and I brought her from California where she was still assisting her own mother, to Washington, where she stayed with me during a series of tests. She was still hopeful and determined when a bronchoscopy lung test went horribly wrong and she was hospitalized, her life in imminent danger.

My brothers and sister arrived and we kept vigil at the hospital. During the only time we left her alone for a few moments, she quietly died.

After our hospital vigil and a breakfast together, we all returned to our house, stunned and grieving. Within moments, the phone rang. It was Barbara, reporting that Louise had also just unexpectedly died.

Their obituaries were printed in the same column in our local Michigan newspaper. Our mother’s first, June Zemke Dereske, followed by our aunt’s: Louise Dereske Zukas, I wondered what they would have made of that.

Louise had requested no funeral, but our mother had planned a funeral mass in Michigan and burial next to our father, so we held two Catholic funeral masses in Michigan, a day apart. The timing of their deaths caused much comment and bemusement. More than once at the VFW Auxiliary-hosted luncheon afterward, we heard someone say, “Those two,” in between shaking heads and engaging in the Midwest passion for telling stories of the lives of the dead.

A few years after our sojourn in Michigan, Kipling developed a persistent backache and was diagnosed with colon cancer. He died in our home at the age of forty-nine.

Morris the cat was unsuccessfully adopted and reappeared at the farm a few weeks later, but from then on kept his distance from people. Ray replenished an open bag of cat food in the garage for him. For years Morris would appear and disappear until people were unsure whether they were seeing Morris or one of his progeny.

Thieves pried out the coins and valuables that Louise had cemented into her stone patio, and the antique glass she’d left in the yard slowly disappeared.

But the farm and the land remained, each season laying its changes on the flora and fauna that thrived there, a constancy, while the lives that had shaped and been touched by it, passed through.


Life can’t be lived without hurt, though I try to cover the bad memories with good.
Louise

Chapter 27

October 7, 2014

Tags: Chaptr 27

ALL OF US AT THE SAME TIME

©Jo Dereske 2014

Chapter 27



Fate Intervenes


The calendar year wound toward its end, and not only did our departure loom, but so did Louise and Mike’s move from the farm into a care home. Ray and Barbara had investigated nursing homes and made arrangements for their transition to a small, well-staffed facility with an excellent reputation to be as painless as possible, although we all accepted it would be anything but.

We strategized the logistics of their move, tried to prepare ourselves for the approaching upheaval. It was going to be a treacherous journey and every aspect of it was weighted with dread. There weren’t enough words we could tell ourselves to make it any easier.

But as frequently happens, when an ending is superficially imposed, Fate steps in and provides another ending. As if by stating your plans, you’ve invited the world take it out of your hands.

In the morning, as I poured Mike a cup of coffee, he sneezed. At lunch, I noticed his face had developed ruddy spots high on his cheekbones. He wouldn’t let me take his temperature, but I felt his forehead and confirmed he was feverish. He hadn’t been off the farm for three weeks, so we knew either one of us or one of the social services people had brought him a contagious illness. Louise was fine and so far, so were Kipling and I.

Mike had always been healthy – I couldn’t recall seeing him with a cold or sniffles. Mysteriously, his fever appeared to clarify his mind. For one long joyous day, despite his fever and a deepening huskiness in his voice, he was tender with Louise, calling her “Weezie,” responding to her conversation, and speaking in simple but coherent sentences. It was a small beacon of light.

But that night, I was awakened from a dozey sleep by Louise’s distressed voice over the intercom shouting “Operator, operator. Send an ambulance. I need help.” (more…)

Chapter 26

September 30, 2014

Tags: Chaptr 26

ALL OF US AT THE SAME TIME

c Jo Dereske 2014

Chapter 26



Drawing In


All that lingered in the vegetable garden were a few still-viable cold-weather plants: brussel sprouts, carrots. We’d suffered our first frost and a single pumpkin vine, its leaves limp and some blackened, still nourished four decent-sized and nearly orange pumpkins. Kipling dug and cleared away the dead and dying plants, piling them beside the garden in a makeshift compost pile. Would there be a garden next spring? If so, it wouldn’t be planted by us.

Two lawn chairs sat side by side at the end of the garden for Mike and Louise to sit and watch. Tending to the garden or caring what happened on the farm had slipped away from Mike. He was most attentive to movement now, it didn’t matter the source, even running water, a flapping towel on a clothes line, a passing car. Except for sudden, unexpected flights into fluency, he rarely initiated or responded to conversation, and then haltingly in simple English or even in Lithuanian. Sometimes Kipling built a bonfire near the garden and Mike stared into it so intently he rarely blinked. On good days, Louise pulled her chair closer to Mike’s and held his hand.


I showed Louise a photo in the newspaper of a local women’s group, knowing she was acquainted with several of the women, and had known them since they were young.

But one of the women in the photo reminded her of a relative who’d visited her in Chicago and whom she suspected of stealing her best black silk slip. (more…)

Chapter 25

September 23, 2014

Tags: Chaptr 25

ALL OF US AT THE SAME TIME

©Jo Dereske 2014

Chapter 25



Seasons


We were gifted with a week of Indian summer, just when we believed we were about to descend into rainy fall weather. The ground crunched with dried leaves that sent up earthy fragrances. Urgency filled the air. Spiders burrowed into the dirt and invaded the house, seeming to spin new webs within seconds of brushing away existing webs.

Along the prairie portion of my trail I frequently came across the trails of box turtles making their sluggish way toward the creek. They pushed fallen leaves ahead of them like snow plows and when the piles grew too large to push any farther, (more…)

Chapter 24

September 16, 2014

Tags: Chaptr 24

ALL OF US AT THE SAME TIME

©Jo Dereske 2014



Chapter 24



The Revolt


With Louise so weak and teetering on the outer edge of her life, we returned to the little house to prepare a brothy chicken soup for dinner, debating whether to call relatives for what might be a final visit with Louise, when Kipling suddenly said, surprise lifting his voice, “Take a look at this.”

I looked out the window. Louise, fully dressed, sat on her patio in her metal chair, her bare feet up on the rock tree ring. She’d been living in her nightgown and robe for days and the fact that she could summon the energy to dress herself had seemed impossible that morning. We were astounded and thrilled and rushed outside to greet her.

"Who's paying my bills?" Aunt Louise demanded as soon as I stepped onto the patio.

"Ray is," I told her, my smile still wide at this beautiful vision of her up and dressed and apparently recovering. It was miraculous. We were overjoyed. "You gave him power of attorney so he could pay all your bills for you," I explained as I had so many times. I felt jubilant, teary-eyed.

"Well, I'm well now. Nobody needs to have control over my money except me."

"You're still the boss," I assured her. "Ray only does what you tell him to."

"I want control over my own money."

We talked it through again (more…)

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. (more…)

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…)

Quick Links

Find Authors