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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

Transition: Traveling Across the Country to My New Old Home

Summer 2012

As spring in North Carolina gives way to summer heat, as it always does before the calendar declares the change of season, I pack up my little house. It was no surprise to anyone that it sold quickly, still I am shocked to already be doing this. From my empty attic bedroom, I watch professional movers load my winnowed belongings into the end of a huge truck and try to swallow the lump in my throat. I thought there would be more time here. Emma and Rebecca will meet the truck in Washington in a week or so and oversee its unloading into the mini-storage unit I rented over the phone, where most of it will remain—like me—on hold.

That night dear friends sit with me on the floor in the bare, candlelit hearth room and share the last of our many meals together as they help me say goodbye to the house. I have saved each of them something from my belongings: a folding saw for one who has embarked on her own single life, a bird’s nest for another, an antique canning jar, a flying pig from the top of my gate, a tin garden chicken for another. I can’t believe I’m leaving these dear women. Doubt begins to crowd my heart.

I move into a friend’s guest room so I can continue to be a wage-earner while I wait for my second grandson to be born across the state. Three weeks later, I load my 14-year-old Honda CRV with a few clothes, a cooler with food for me and insulin for my twelve-year-old diabetic cat Smudge—traveling in a dog crate behind the front seats—the oil painting a friend made of my beloved house that I didn’t trust to the movers, a used Rand McNally US Atlas with a tentative route marked, and my newly upgraded AAA Gold Plus membership card. I say one more goodbye to friends and co-workers who celebrate my 60th birthday with me the night before my departure. Driving to the house and restored gardens that are no longer mine one last time to pick up mail—left for me by the new owners at the door I had painted Bittersweet Orange before I knew what that would mean—I breathe a namaste to my life here, get back in the car, and head west without looking back. It’s time to discover what’s next.

Smudge is none too happy in the crate. I feel her pain. We howl together as we drive out of the city that has been home for 24 years and turn west down US Highway 64. I am pummeled now with doubt. What the hell was I thinking? My sister is there at the other end, clearing her leftover things out of the rooms she had moved out of five years earlier in the basement of my mother’s house, readying the space for me; but beyond that there is nothing to prepare me for what I am getting myself into. I’m panic-stricken. I’ve moved across state lines before, not knowing what I was heading into, but always I had a partner—and later, children as well—with whom to face the unknown. They were my life then, not what I was leaving or going to. This is not what I thought my sixties would hold. I was supposed to be keeping house with a for-life partner, waiting for children and grandchildren to visit and fill it with noise and laughter. I surely never thought I would be living with my nonagenarian mother in my childhood home in Nowheresville. But as the miles and my old life roll away, I slowly let go of my grip on what I thought would be. I am ready for a new venture. I begin to look through the windshield, rather than the rearview mirror.

When I left the West coast for the Southeast in 1976, it was by car. I’m glad to be returning state by state now as the miles roll by under the tires, leaving my whole adult history behind. I need time to feel the transition. I travel on the two-lanes, the road like scissors neatly clipping my life into the time before and the time after. I travel over the Appalachian Mountains of my Tennessee-born mother’s childhood that I have grown to love, pass through small towns unnoticed by all but those who live there, through fields of soy beans undulating in the stifling hot breeze.

I get lost after leaving my used atlas locked in my niece’s home in Nashville. I eventually replace it with a glossy new one. I turn to Phoebe—the GPS voice I added to my non-smart phone plan—for help. I named her for an ancestor who had traveled 160 years ago by covered wagon from Ohio virtually to the same place to which my parents migrated a century later. In spite of our genetic connection, she isn’t always helpful. It doesn’t matter, really, I’m time traveling. Routes and schedules are not important.

Switching to Interstate 40 across the dusty plains of Oklahoma and Texas, I visit the sobering empty chairs of the Murrow Federal Building memorial in Oklahoma City and the ridiculous graffiti-covered cars planted headlights up in the dirt at Cadillac Ranch in Amarillo. I marvel at the beauty of the enormous hi-tech white windmills that stand sentinel on the smallest of rises in the landscape, in contrast to the creaking wooden ones on long-deserted farms, providing power to no one. A lump forms in my throat as I imagine the impossibly desolate lives of people who fought to survive on the windswept dry earth. An occasional tumbleweed bounces across the road in front of the car, escaping the leaning orange snow fences erected to keep them from the pavement, punctuating the loneliness of both the landscape and my heart.

I climb to Red Rocks amphitheater in the mountains near Denver and sit by a mountain lake in Medicine Bow National Forest in Wyoming. I buy Rainier cherries in the Yakima Valley and finally head over the Cascade Range with Mt. Rainier rising to greet me. I am home. The mountains and trees of the Pacific Northwest is where my soul is at peace in a way that it never was in the Southeast, even after 36 years and three states. Like a pentimento, a trace of an earlier painting visible under those layered on top of the canvas, I have layered several lives on top of this childhood home. Now, scraping off the richness of those years, I am back to my first love.

Two weeks, 4000 miles, twelve states, five homes of friends and family scattered across the country, a fall on a slippery sidewalk resulting in a shoulder injury that will remind me of a grocery store at a barren crossroads in Arkansas for months to come, one car repair in a dust and wind-whipped Wyoming town, and a panic-stricken two hours when I thought I had lost Smudge from a motel room, I arrive in western Washington to begin life with my mother in my new old home.

The Giraffe in the Back Yard—Arguing with Dementia

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.