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Bumpy with Chance of Potholes

August 2016

Life is a beach, some say. For me, life is a trail. Change or reorder the vowels, as the situation warrants. The very best thing about my small home town, and being back here as an adult with a car (with 268,000 miles on it), is there are literally hundreds of beautiful places to go—from mountains to sea—and be home for dinner.

When I returned four years ago to care for my mother, I didn’t have to be home for dinner. She heated one of the frozen dinners she insisted on buying or ate leftovers. Now, though, she can’t see what’s in the refrigerator and she can’t read or remember the instructions on a frozen dinner; and she is increasingly particular about food. So now I’m home for dinner unless my sister can be there. I wonder when the day will come that Mama can’t be alone at all. I’m grateful it’s not yet.

Monday I went to Tolmie Peak in Mt. Rainier National Park. As I rattle across the washboard road up the mountain, dodging potholes and sinkholes, I observe their connection with Mama’s life, and mine with her. She is better at avoiding them than I am, as she steers clear of my backtalk. I am apt to challenge her dementia and her woe; but I am getting better at not falling into the holes with her, protecting both her and myself.

Like yesterday when she said she guessed “we” shouldn’t make a pie again because the rhubarb juice burned onto the pie plate and she had scrubbed and scrubbed but it was never coming off. She guessed we could look for another Pyrex pie plate at an antique store. Was she really saying “you ruined a family heirloom”? I apologized and promised to work on cleaning it. “Just leave it,” she sighed. Michelle apparently got it clean, it was back in the drawer last night. I once might have said something about it not being hopeless after all, but now I let it go.

She fell into a sink hole the other day after a session of taping her epic life story. She was almost in tears as she told me at dinner that while she could remember the man she passed in the hall at her job 75 years ago, see his face, and what he said every time they passed, she couldn’t remember that his last name was Burroughs at the moment she was recording the story. “My mind is really going,” she whimpered. “That’s hard,” I said sympathetically, not adding what a minor forgetfulness that was. Not pointing out that she is on her ninth 90-minute tape and is only now at when she met my father, clearly remembering a great deal of detail. Only this one forgetting was important to her right then. She didn’t want to be bothered with facts.

On the other hand, she refused to believe me yesterday that her small cavity was filled in December; that it wasn’t at her February exam that the dentist said she had one; that she doesn’t need to go in before next month’s cleaning appointment, suddenly thinking that it can’t wait another moment. Such a jumble of remembering, not remembering, misremembering. These clear signs of cognitive dysfunction are harder for me to let lie.

As I have gotten moderately better at not challenging her memory when it doesn’t matter, I realize that when I do correct her I feel irritated with her. Don’t you dare lose your mind; I will keep you from it. When I don’t challenge her, even in my head, I feel sad. In the same way that anger is easier than grief, irritation is easier than sadness.

She hasn’t blissfully left the past behind and moved into life in the moment. She knows she is forgetting and she’s frightened. She insists her version of the story is the correct one, and she accuses the forgetting on those who care for her—pushing us into the pothole—because that’s easier than admitting the holes are in her brain. And it surely beats letting us be her memory.

I am doing well stepping between the roots and up and over boulders on my way to Eunice Lake and Tolmie Peak, until I lose my focus and stub my toe hard, going down on one hand on the steep trail. As I navigate the downhill switchbacks that come next, my toe throbbing, I understand the inevitability of imperfection at this job. I will lose focus and double back on myself, relearning what I have forgotten.

As I wind back and forth, down and down, I hear the voices of those above and below me, voices that will quiet on the straight sections, leaving me alone. They might be the voices of those who have gone before, reminding me that this is noble work and that someday I will appreciate having had the experience—a gratitude I’m not feeling right now. Or maybe they are the mentors providing information about why things are the way they are and suggestions for dealing with it. Or maybe it is my own voice, reminding me to let go of my stumble on that last root and keep going.

I grip my trekking poles and propel myself determinedly forward as the trail straightens and climbs back up.

Mama and I are climbing a mountain, and it certainly isn’t an obstruction-free or level trail. But we will get to the top. We will emerge from the trees and into the alpine meadow of wildflowers overlooking the mountains and the heavens. When we reach the summit, I will return alone, re-walking the trail in reverse order. This is grief. This is joy.

I drive home after my hike, sad the day is over, breathing new life for having done it.

All the Time in the World, Part 2

All the Time in the World, Part 1

I try to remember my mother wasn’t always old. When George returned from Europe in 1946, he and Stellajoe could finally begin their life together. The world was their oyster, waiting to be discovered. . . . (Continue reading)

Part 2

December 2015

My mother’s hopes and dreams of the future are all far behind. She has no projects, save sorting her clothes—or thinking about sorting her clothes—and trying to record her mother’s story. During my childhood, she never took time for herself, developing her own interests and hobbies. “I don’t have time to read,” she would say, when my sisters and I urged her to go sit in the living room with our father after dinner so we could do cleanup without her telling us how to do it. I don’t remember ever seeing her read a book for pleasure. She dabbled with a variety of crafts in her 70s, but the idea of engaging in anything for shear pleasure wasn’t ingrained in her over a lifetime, so she didn’t stick with it then and she has nothing to sustain her now.

Her interests remain confined to the kitchen and obsessing over her health. And she can’t do much in the kitchen anymore.

“I was lazy,”or “worthless” she says when I ask how her day was. Relaxing is not okay, even when listening to a recorded book. She sets the kitchen timer for 20 minutes for a nap, as if she has something to do, places to go, people to see when she gets up. She berates herself when she sleeps through it, getting up two hours later. “I wasn’t asleep,” she tells me, as if sleeping is a personal failure.

I didn’t know that young woman, but now I know this old one better than I ever dreamed I would, and yet I can’t figure her out. After my father died, she reclaimed her fierceness, caring for herself with no one’s help. She never asked her daughters for assistance in making decisions. From across the country, I had no idea what she was up to. I read about studies, based on Maslow’s theory, showing that as people age they focus on being rather than doing. Not Mama; she still wants to do, and here I am doing it for her. I wonder if she is stingy with expressions of gratitude because she resents me for being able to do what she can’t. Telling me how to do things is a desperate attempt to stay in control; and to remind me—and herself—that she is competent.

Her dreams now are nightmares. She struggles to dress herself. She slowly stirs on the stove the maple-favored Malt-o-Meal I measure out for her the night before. She doesn’t go outside alone. She pushes her walker through the rooms of this house she has lived in for 55 years, running into furniture she once used as markers as she walked with fading vision through the rooms. She won’t move them or eliminate them to make space for her current needs; she can’t imagine anything other than the way it’s always been. The walker bumps through doorways not built for such conveyances. I smile as I see three-year-old Rebecca in my mind—who never walked but ran—racing on her short legs down the hall through the same doorway into the kitchen, running into the same jamb as she wheeled around the corner. It’s a house of ghosts, dead and alive.

My mother is utterly alone in spite of those of us walking this journey with her. Her love is gone again, forever this time. Hope is gone. All that is left is the waiting. Waiting to leave this good life she has had and has no more. And stubbornly hanging onto control, even when it doesn’t serve her. Maybe it’s what is unwittingly keeping her alive beyond her desire to be here.

This morning, as I transcribe another letter from 1944, I watch Mama over the video monitor, fumbling in her bedding to find her talking clock to see if it’s time to get up or still the middle of the night. Getting up for what? How does she keep going?

Someday I won’t climb mountains, travel alone, dream of the future, either. Like my mother, I am stubborn and independent. I have the opportunity right now to choose how that manifests itself. If I hope to be more grace-filled, more accepting of the way things are, kinder to those who care for me, I should start practicing. I probably won’t lose my vision, or be as anxiety-ridden; but whatever life throws at me, I hope I will be as brave as my mother.

“I have seen in you what courage can be when there is no hope.” May Sarton

The Unreliable Narrator

Mama has cognitive dysfunction, or brain fog. As the years go on, gradually more of her brain succumbs to the fog, while other parts continue to fight it—and me—in every way it can. While dementia is advanced cognitive dysfunction, and Alzheimer’s a type of dementia, I still don’t believe she has those more debilitating diseases. But the synaptic failure she does have brings those of us who care for her to our knees in frustration.

Arguably, the most frustrating thing is her invention of facts to help herself over the fumbling for what is lost in her short term memory. The cognitive dissonance between what she has made up, erroneously perceived, misremembered, or pulled from distant memory, and what I am telling her is truth, stresses and agitates her. She fights to reconcile them and come out on top.

“I don’t think the nightgown I had on last night is mine. It didn’t feel right. I couldn’t sleep.”

“The one hanging here is yours.”

“Which one is it?”

“It’s pink, with bright flower fabric sewn on the bottom.”

“There’s a new night aide. She said it was bright purple. I don’t have a bright purple gown.”

“You do have a purple gown, two in fact.”

“It’s lavender. Maybe she’s colorblind.”

“Maybe.”

It’s impossible to know if this conversation even happened, let alone what was said. She tells many tales I know are not true, though, and her insistence that they are decreases her happiness quotient. It’s not possible to talk her into the truth. Add to that the stories that may or may not have happened and she’s a very unhappy camper. And it’s all because she is living in a place she doesn’t want to be. It happened when she lived at home too. She doesn’t remember that.

The food is swill, though she liked it when she arrived three months ago. Everything has gravy. She hates it. We were walking the halls the other day and passed her table mate just before lunch time. “See you at gravy time,” Mama said to her. In fact, at my request, she (supposedly) hasn’t been served gravy for the past three weeks unless she requests it. But I can’t know she’s not getting it unless I attend every meal with her; I can’t rely on her to tell me. She didn’t like the food at home, either. She doesn’t remember that. True, it had no gravy, but she wanted gravy then, or sauce of some kind.

“Lorrayne told me the dessert at lunch was pumpkin pie,” Mama tells me. “It tasted like gravy.”

“The menu says it was applesauce pie,” I say. (I’m quite sure her table mate didn’t tell her it was pumpkin.)

“It tasted like chocolate cake,” she says. I roll my eyes.

I don’t know how to fix this. I know she wants to come home, because life was perfect at home. Except there was her bratty daughter, she had no visitors, she couldn’t do anything except sit, her caregivers irritated her. And she didn’t get what she wanted to eat prepared the way she wanted it, which was based on her unreliable memory of the way it used to taste.

I feel sure people think I am a terrible person for not being able to keep my mother at home.