Jo Dereske

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. Earlier in my life I would have resented her monopolization but our hearts warmed to this woman who was struggling alone and desperate for support. She was far more "raw" than the rest of us. Her husband's diagnosis was less than a week old and she was determined to "talk him out of it." She was frightened and angered by his bizarre behavior.

“He emptied out all the kitchen cupboards last night,” she said, her eyes filling with tears. “And got mad when I put everything back. He wanders away and doesn’t tell me where he’s going. This morning I couldn’t convince him that it was Tuesday.”

"Let him win," Susan advised her. "If he says the sky is green, agree that green's a nice color and he'll calm down. He's losing so much and he's frightened; he's trying to win at anything, so he can feel that he's all right, that he's not losing his mind. He knows there's something wrong but he can't figure out what."

In quick bursts, we compared stories, eagerly turning and pulling words from each other. What’s worked for you? How do you handle wandering? Does your uncle ever hit? I can’t make her stop calling me by her sister’s name. Why is he suddenly afraid of dogs? He’s always loved dogs.

At last, people who knew exactly what we were experiencing, all members of a soul-draining club that had no rules or logic, bound by the desire to care for people we loved.

"Whatever your emotion, the Alzheimer's patient reflects it back to you," Susan explained. "If you're agitated, they become agitated. If you're calm, they'll grow calm."

The meeting was scheduled to last from seven until eight-thirty but we remained in our chairs until after ten, exploring, examining, probing for solutions, still talking as we walked to our cars in the parking lot. A frigid clear night hung above us, stars like crystals.

"Every case is different. There are certain behaviors we normally see as Alzheimer’s progresses, but it's impossible to predict when they'll occur. Some people never experience these behaviors. Some experience them all in a few months and slip away quickly. Others can live for years, slowly fading away."

"There is no cure."

And Susan looked at me when she said, “You can no longer give them memories, only moments.”


1930 Got eggs from home and a big veal roast and wild duck. Mother is too good. I am grateful. Beautiful weather. I walk a lot and try not to think about our troubles. Watched children play in the park today. They’re nicer than us adults when they’re nice, and worse when they’re mean. But at least they put it behind them fast.


The snow had melted in the shade of the woods and puddles had soaked into the ground: it was time! I couldn’t wait a day longer before I began my trail. I invited Mike to help me plan its route.

“A trail?” he repeated. “God oh God.” But he gamely joined me, dressed in a barn coat and work boots. We walked together behind the barn, me chattering about my brilliant idea to make the longest route possible and him repeating my most stressed words. “Through the berries,” “above the creek,” “A shovel.”

He seemed at ease, tugging on a fence post here, picking up a stick there, and companionably nodding as I rambled.

“I want to weave through these trees,” I said, stepping into a stand of oak.

Mike took one uncertain step after me and froze. He gazed around him at the close tree trunks, his mouth silently working, and then turned his head to look back toward the barn.

“What do you think of making a path around that big beech tree?” I asked, pointing toward a silvery-barked giant.

He shook his head. An expression of panic mottled his face. He awkwardly twisted his body and without saying a word, stumbled back toward the barn, away from the now foreign forest.

Mike beelined toward the house and I lengthened my stride to keep pace with him, trying to speak calmly about the clear day, the new grass, anything that held no emotion or agitation. I opened the door for him and followed him inside where Louise said, “I thought you went fishing,” and Mike responded, “He wasn’t home,” before I returned to the oaks.

I meandered, marking twists and turns with stakes Kipling had cut from slats for me and I carried in a burlap bag slung over my shoulder. My route would pass beneath the tallest trees and snug up to the creek bank for as long as possible. The trees were still skeletons of themselves, the underbrush leafless. In spots I knew the earth remained frozen a few inches below the surface.

But I couldn't wait any longer. I found an axe, shovel, hoe and a pair of knife-sharp loppers in Mike’s shed, donned my oldest jeans and a faded barn jacket of Louise’s and headed for the woods, feeling like a pioneer setting out on a long slog.

Every morning after preparing Louise and Mike’s coffee, I hacked at bushes and roots, and wrestled with brambles, returning inside only to eat and help with Louise and Mike. I wore through a pair of gloves and then another pair. My soft winter muscles ached to distraction. After dinner I soaked in a hot bath and stuck new bandages on my blisters.

I accepted Kipling’s aid only to move the largest fallen tree branches. This signified more than a trail. Once far enough into the woods that I was out of sight and sound of the house I felt an exhilarating sense of freedom and solitude. I needed this trail.

Although the woods were silent, when breezes blew just right, the eerie sounds of sighing and moaning floated to me from the direction of the house. The melting snow had uncovered rows of glass bottles along the south foundation of the antique shop, where Louise had lined them, taking advantage of the sunny exposure so the old glass would turn colors: purples, blues, a few pink, according to old glass formulae. When the wind blew across the open bottle tops they keened and whispered like mad organ music.

The color changes increased their value in Louise's shop. Other glassware decorated a nearby stump for the same reason: crystal sugar bowls, vases, drinking glasses, goblets, more bottles.

When I stopped to have tea with Louise, I told her how much I enjoyed hearing the wind across the bottles’ mouths. “I used to do that,” she said and sunk into a black funk for the remainder of the day.


1930 Mother sent a chicken for my birthday dinner. Billy gave me purse and gloves. I wish he wouldn’t have.


The slant of the sun’s course through the sky lengthened. The air fairly shimmered in anticipation of warmer days.

As I hacked my trail into the side of the steep bank above the creek, the sun through the bare trees grew so warm I peeled off my jacket and hung it on a branch, working in shirt sleeves. Beneath me, the amber water of Weldon Creek rushed and babbled its winding path. Brilliant yellow-green skunk cabbage thrust upward in the swampy verge like tropical apparitions. I chopped at the root-bound earth with a sharpened hoe from Mike's greenhouse, a hoe he'd honed so many times, it was only half its original size and oddly the handle was only half its original length, as if he’d broken it but believed it was too good – or perhaps too familiar – to throw away.

Around me, the forest floor was opening to life: budding birdsfoot violets, fiddleheads of bracken ferns, yellow-green moss. It was too early for trilliums and daffodils, two flowers that heralded the honest arrival of spring.

My trail was impacting the wildlife, perhaps interfering with accustomed paths, yet offering them new avenues, too. A weasel, still partially in its sleek winter white, undulated silently through the woods and stopped at a tree, climbing a foot up the trunk. Its head snaked around on its pencil-thin body and it regarded me for a moment before it leapt down and disappeared like a specter. “An ermine,” Mike said as sure and clear as anything when I told him. “You don’t see those much anymore.”

The mammal book explained that one of the few differences between a weasel and an ermine was the length of its tail and the size of the black tip at the end. In the winter they both turned white and were both trapped as ermine.

In Mike awakened the same autonomic response to spring as in the trees and animals. When I arrived early in the morning to make coffee, trying not to awaken them, he was frequently already up, scrutinizing the day through the windows, dressed in his farming clothes and searching for his leather boots. He wandered around the farm, often without a coat, once with only one shoe, opening and closing the barn doors, minutely examining the shed wall, picking up a hammer and dropping it, carrying a rake outside, then putting it back, carefully tying a piece of twine around and around the outside water pump handle in a mysterious but definite pattern.

Kipling shadowed him, worried he might slip on the muddy earth or wander off, although he tried to stay invisible to Mike. I longed to be inside Uncle Mike’s head for a few minutes – only a few minutes. Was his physical landscape the same as mine? What about his sense of color and his hearing? I wondered if he experienced a narrowing simplicity that held its own measure of security. The world had grown much smaller for him, but did that make it safer?

He performed skeletal versions of his old spring tasks: haphazardly pruning raspberry canes, raking random squares of earth. He’d always propagated his own garden plants, growing them from seed he’d saved from his best produce, refining and nurturing his vegetables to create truly spectacular specimens, a natural botanist. He was the only source for a yellow acid-free tomato that was too dangerously low in acid to can but was a great “slicer.”

He’d stored these seeds in various-sized jars in a cool dark corner of the barn, clearly labeled, for the following year. The seeds hadn’t been touched in at least two years. Kipling was encouraged to see Mike opening the jars and sniffing the contents, then rearranging the jars.

What Kipling missed seeing was Mike emptying all the containers of seeds into a single bucket and before Kipling could intercept him, Mike carried the pail to the bank and tossed the seeds as if tossing a bucket of water, over the bank and into the ditch. They blew on the breeze or sifted into the grass. Scattered. All gone.

One afternoon Mike dragged weathered boards from the barn: two by fours, eight-foot planks, pieces of plywood, and stacked them neatly by the big barn door. After hours of diligent work, the boards were propped every four or five feet, all around the barn as if to keep it from collapsing.

“Why did you put the boards against the barn?” I asked him at dinner.

He studiously looked away from the window where the boards were plainly visible. “I didn’t put any boards against the barn,” he said, and shook his head at my crazy ideas. “God oh God.”


1930 We have hit the end of the rope and it hurts. I’m going to go home and Bill will stay with John to try to find a job. We can’t afford to pay rent anymore. I WANT to go home.


The temperature rose to a balmy fifty-seven degrees and for the first time since we’d arrived Louise emerged from the house on her own. Still in her nightgown and robe, bundled inside a jacket, she unsteadily walked the length of her patio and back and then repeated it, then again, each time a little more sure of her balance, a little more upright, her head turning as she absorbed the day. Morris curved around and through her legs, dropping in front of her and rolling onto his back. I held my breath, but she managed – or he did – to avoid an entanglement.

"I'm going to drive my car today," she announced when she saw me, waving one hand toward the garage. Keys hung on a nail in her kitchen, but they were only for her peace of mind. We’d exchanged the actual keys for keys that we’d found in a drawer and which fit nothing.

"I'll take you anywhere you'd like to go," I assured her.

Her face darkened, her chin rose. "I'm going to drive myself."

"All right," I agreed calmly, wondering if I really was learning anything. "You tell me when you're ready and I'll get your car out for you."

"Maybe later,” she said. “Could you set a lawn chair on the patio? Bring two. No, six. For all of us.”

After I cleaned off the dust and spiderwebs I set up six metal lawn chairs from the garage, positioning them exactly where she directed me to, her own angled so she could rest her feet on the stone collar around the tree, she asked, “Do you think I belong in a nursing home?”

I sat in the patio chair beside her, the metal cold through my pants. Louise wore less and seemed impervious. Wasn’t this the moment to reinforce the idea of assisted living? It was my opportunity to broach the subject while she was clear and calm, to begin introducing it often enough that she would hopefully remember and accept.

But the day was beautiful, Louise was content, we were sharing a calm, intimate moment. I opened my mouth and what came out was, “They’d probably throw you out. You’re not sick enough. In fact, I think you’re stronger all the time.”

Aunt Louise frowned and finally answered, “Maybe, but I’m not getting any better looking.”

A few moments later, she asked, “Do you think Mike could live here by himself?”

“It would be very difficult for him,” I told her, recalling Susan’s more “gentle” approach instead of saying what I knew was true: no, he definitely couldn’t.

“I don’t think he could, either. On days when I feel good, like now, I wish I could go on living forever, but on days when I’m depressed, I wish the Lord would take me. I’ve lived longer than my father or mother lived, longer than anyone in my family.”

“That’s true,” I agreed, remembering all those short-lived people.

“Well, I wish they were here so they could congratulate me.”


1930 At home. Helped Mother clean. Wet, sloppy snow. No letter from Bill waiting for me.


As I pulled out a roll of paper towel in Aunt Louise’s pantry, noticing how we’d finally begun to make a dent in her stores, the corner of a large box wrapped in old fashioned brown parcel paper and tied with string came to light. A yellowed label was addressed to Lithuania. The return address was my grandfather's who'd been dead for thirty years. I took it home and opened it.

Inside were dresses, with Lithuanian language pamphlets hidden in the pockets, shoes, a purse, candy and two cakes of lavender soap. I was too curious not to ask Aunt Louise about it. So I rewrapped it in its brown paper, retied the string, and returned with it to the house. When she spied it in my arms, she grimaced. Its memory was still fresh – and painful.

“After your grandmother died, your grandfather wanted to send her things to her sister in Lithuania.” Louise shook her head. “But the post office wouldn’t mail it to Lithuania, not in those times.. I couldn’t stand to disappoint him so I let him believe I mailed it. Then I felt too guilty to throw the package away.”

She studied the package for a moment, frowned, and touched, almost caressed it with her arthritic hand. “Could you put it back? I’d feel better.”

I tucked it back into its place in the pantry between the paper towels and two cases of canned tomatoes.


1930 We all went to church including myself. What else is there to do? Early to bed and early out! I mailed a roasted rabbit to Billy. He’s working but doesn’t want me in Chicago. Why? Too troublesome and no place to live anyway. I get a letter from him every day. I’m so blue and lonesome. It’s cold here. Snow.


Next Tuesday, Chapter 11: Tricks of Springtime