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Bumpy with Chance of Potholes

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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.

Worrying in a Snowstorm

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It snowed last night and it’s floating lightly down still. I feel enveloped in beauty and solitude. I haven’t seen Mama since Friday and now it’s Wednesday. I was sick Saturday and I didn’t want to expose her on my way to Seattle for childcare on Sunday. She’s expecting me today and I have no way to let her know I’m not going to venture down the hill. We do need to get her a phone; I’m sure she feels isolated.

I go for a walk in the woods leaving virgin footprints on the trails, but for the deer and rabbit tracks. It’s a wonderland in black and white. In mid-afternoon, though, the weak sun breaks out, melting the sidewalk and steps to the carport; and, according to the forecast—which is not necessarily trustworthy, since it missed the snow event entirely—the temperature is to be above freezing for a little while. I decide to try driving down the hill just before early dinner at the Manor when Mama will be up from her nap.

Rebecca checks in to see if I have been yet. I tell her I’m going shortly. She texts again. Mama has gotten an aide to call Rebecca on her cell phone so Mama could talk to her. She’s “worried sick because no one has come,” Rebecca texts, adding an eye-roll emoji.

Skidding in the driveway, I get to the road. It is not clear, of course. It may not melt for days at the curve under the trees with the temperature in the twenties at night. I have all-wheel drive, but my car is old.  This was a bad idea. When it comes to driving in snow, I’m a worrier too.

When I reach Mama’s room, she practically falls into my arms.

“I was so worried!” she exclaims.

“That’s why I was staying home,” I say. “I thought you would understand I didn’t want to come down the hill in the snow.”

“Have you been home?” she asks.

“All day,” I say. “But you told Rebecca you were ‘worried sick’ so I decided I would venture out. And I wanted to see you,” I add belatedly.

“But I thought you were coming back from Seattle today.”

“I came back yesterday, Tuesday, like always. I left early, in fact, because of the forecast.”

“I didn’t know that,” she sighs.

Rebecca tells me later she told Mama yesterday I would be home last night, but Mama forgot. When Rebecca told her I was “on my way,” she thought she meant from Seattle, so she hadn’t stopped frantically worrying even then.

And she had thought Rebecca was going to the dentist at eight o’clock, twenty minutes away on two-lane roads; an appointment Rebecca canceled. “I had visions of you both stranded on the road, sitting in your cars freezing!” she says.

“You only have to remember one thing,” I say, knowing she won’t: “neither of us will drive out of town in snow and ice.”

I can’t keep her from worrying, she’s been doing it her whole life. But dementia exacerbates it and I will drive myself crazy trying not to be the cause of it. I don’t know if a phone in her room will help or not. I can think of a dozen pitfalls: she won’t hear it ring, she won’t take a nap for fear of missing a call, she’ll fall hurrying to get to it, she won’t remember how to use it, she won’t be able to hear, she’ll misunderstand, she won’t remember, . . . I don’t know what to do. I guess what we’ve always done, my father too: let her worry. It makes my stomach hurt.

All the Time in the World, Part 2

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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 Giraffe in the Back Yard—Arguing with Dementia

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This post was originally published on my blog in May 2013, ten months after I moved in with my mother.

I know my sisters and I would be viewed with envy by those caring for a parent whose dementia caused a drastic personality change or who sees giraffes in the backyard. We know how lucky we are, and how lucky Mama is. In many ways she is more the person she has always been, both the maddening and the lovely.

Her dementia is insidious, though, and sometimes we don’t notice the subtle forgetting. We pass off the ridiculous things she says as the “say what?” way her mind has long worked. “Validation technique” is not useful. We can’t just ask her how many giraffes are in the back yard and say we hope they don’t eat all the leaves off the trees. Which arguably would be more fun (if also sad), and easier not to argue with.

She doesn’t remember the schedule. I have tried memory aids. First a large calendar with the dates made darker with her 20/20 pen. The calendar is right by the phone, but she schedules things on top of things anyway. She doesn’t look at the white board on the refrigerator, where I write in large block letters what is happening on the current day and the next day, so she is surprised when I tell her I’m going to yoga tomorrow, not today; or Rebecca is coming for dinner tonight, not tomorrow. I remind her to look at the board or her calendar and she says nothing.

She refuses to turn over control of scheduling her helpers. She forgets when they are coming, gets addled when they change the schedule, forgets that she has changed the schedule, overlaps them then complains each time that it’s confusing when they come at the same time. Last month she and M―without my knowledge or input―decided M would come four mornings a week rather than five, and chose my one day away for her to be off. Each time I offer to help, she says, “If I’m paying them, Gretchen, I will schedule them.” I roll my eyes and back off.

I want to be able to let her how-to instructions roll off of me. (How have I managed for forty years not to poison anyone by cutting vegetables on the same cutting board I cut raw chicken on without her guiding voice over my shoulder?) I want to be able not to argue when she tells me I should not have called the septic company I did because they have moved across town and they charge mileage. (It’s three miles across town.) I try to let go of her questioning of my ability to write checks for six bills in spite of the fact that I kept the financial records for a large church for eleven years.

It is stupid to argue with a person who has dementia. It’s hurtful and patronizing and harmful to their self-esteem. It takes a big person to take the abuse of no-confidence, and let it roll off without dispute. I’m not yet that big.

Her world makes sense to her. However inefficient, she is the CEO of her household. To imply I know how to do a task I have plenty of experience doing, or suggest there are other ways than the way she has been doing it for 75 years, is as belittling to her as her instructions are to me.

So how to cope?

  1. Center: focus on breathing, count to ten, go to an alpine meadow in your mind (and in reality whenever possible).
  2. Take a minute and move: don’t you suddenly need to use the toilet or feed the cat?
  3. Try to figure out what is behind the statement. “Getting sick from food poisoning is frightening to you, isn’t it? It is to me, too. I will be careful.”
  4. Disasterize: “What so you think would happen if we were late to your appointment?” Perhaps the anxiety can be dispelled when worst case scenari0 is explored.
  5. Find someone to talk to, start a public or a private blog, keep a journal.

Mama’s dementia is not about me. It’s not about her, either. She is not her dementia. I would hold her hand if she had cancer; her heart if it were hurting. I can hold her brain, too. I will not lose my mind. Not today anyway.

The Unreliable Narrator

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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.