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Worrying in a Snowstorm

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.

The Book of Regrets: A Braided Story

On this date, seventy-nine years ago, my parents were married.
In the parlor of the biggest church in Dallas.
It was the only available venue my father could find on short notice.
It was very short notice.

I don’t dwell in the Land of Regret. My mother did, only she called it guilt. “I don’t want you to feel guilty for years like I have,” she would say, referring to not understanding that her grumpy mother’s complaints and inability to be appreciative were because she was old. “I don’t do guilt,” I said, wondering why she didn’t put her efforts into acting less like her mother rather than in shaming me.

Found in a box. Notes on her mother’s transgressions, written perhaps before a doctor or therapist appointment, or for a letter to her far away brothers.

Guilt: Doing something that violates one’s moral compass.

But she didn’t really mean guilt. She meant regret, wishing in the look back she had done it differently. Semantics. But what I meant was that I don’t dwell on it like she did.

Stellajoe had migrated from Tennessee to Spokane, Washington to work on an Army Air Force base.
Neither her job nor her boarding house accommodations were ideal.
George, a newly-trained wartime meteorologist, was in Dallas. 

November 12, 1943. “First I’ll come right out and admit to you that I made a mistake. I should have married you. The fundamental reasons for not getting married haven’t changed. But other things that I foresee have cropped up to at least balance them. I guess I’ve told you enough about Hensley Field for you to realize that we aren’t far from a peacetime organization. And I guess it’s not beyond the realms of possibility that I might hit just such a place overseas, even. If such a thing should come about, I wouldn’t be haunted by the fear that I’d come back to a young wife crippled or disabled. . . . I know your belief that if you love me you’ll never love anyone else. Frankly I don’t believe it.
Time is a great healer and over a period of years I know you could forget me.” 

Regret is typically based on the degree to which your ideal self (what you believe you COULD BE) diverges from your actual self (the person you are in reality).

I knew when angry words left my mouth, I would later wish I had been more compassionate. I also know if I had it to do over, I probably couldn’t have been more understanding in the moment. The words flew out of mouth in frustration, or bubbled up from my own hurt at the way she seemed not to appreciate my efforts; they weren’t from a lack of compassion. Or maybe the angry words were a cover for my own heart-deep pain at watching her decline. What I regret is that I didn’t apologize more. But I would have been apologizing constantly.

“I know I’ve bungled this business very, very badly, and it would be no more than I deserve if you didn’t want  to get married now. I can’t offer you any assurance of a week together even.
But I’m ready to get married.”

It’s been four and a half years since there has been a chance for a do-over or an apology. I am doing exactly what she thought she could spare me: regretting. I knew I would have regrets, I knew it then; but caregiving perfection was not in my grasp any more than it had once been in hers. So what to do with the expanding list? I am discovering that naming them, apologizing in absentia, forgiving myself, forgiving her, makes the vow I did make—not to dwell there—a promise to myself, and to her, that I can keep.

The long, rambling letter was slow to arrive.
On November 16, he sent a telegram, saying he was going to call.
The connection was bad. He proposed on the phone.
She must have told him she would write her response.

As I name them, though, I find a second distinction: not only guilt vs. regret, but regret vs. grief. It’s an emotion I’m still unpacking. Perhaps after the Book of Regrets is written—or at least begun—I will understand it better. I have a feeling grief is not as easily dismissed. Grief is a thing that, over time, we learn to embrace as part of our Self.

The Book of Regrets

❧ Soon after my arrival at my new old home, my mother told me she had asked the yard person to clear out the salal, Oregon grape, and blackberry vines at the landing of the steps to my father’s workshop to create an opening to duck under the vine maples to reach a small wild dogwood tree. She thought I might want to sit there. “Why would I want to do that?” I asked, my voice dripping with dismissal. It was long later that it dawned on me that she knew I was missing my home in North Carolina, and the brick patio I had made under a huge dogwood tree. She was doing what she could to help me find home again.

It’s been ten years as I write this, and the grief of my lack of understanding wallops me anew. I wanted to apologize, to tell her I finally recognized what she was trying to do. But I didn’t do it. In the last days of her life, I remembered again. I knew she was going to be gone and I knew would regret not saying I was sorry, and still the words wouldn’t leave my mouth.

I talk to her now at Staebler Point, in the city’s natural area she so loved. I speak the words into the breeze and hope she knows.

November 19. He sent another telegram saying he hadn’t gotten her letter
and would call when it arrived.

❧ I regret I couldn’t keep her in her beloved home, but the grief doesn’t reach so deeply. I couldn’t, I know that. What I regret is that she didn’t leave the earth before the move became necessary. And I had no control over that. She lived in the house longer because I was here. She lingered in this life longer because I was here. She didn’t die in a hospital, she was in her own bed, I was in the room. I try to let that be enough.

November 22. Another telegram saying he couldn’t get a call through, (after trying for five hours);
but yes, he wanted her to come, the quicker the better. 

❧ I wish I hadn’t asked her tell me how it felt to be old. It was not her responsibility to satisfy my curiosity. I’m glad I didn’t push. It wasn’t really what I was asking anyway. I was asking her for the first time in her life to be in touch with her inner self. I was asking her to share her Self with me. So I could share my Self.

November 23. He writes another letter and is waiting again for her reply, by mail or telegram,
hoping he wasn’t putting her on the spot.
He was sorry he wasn’t clear in the previous letter that he was definite about her coming.
“Maybe I did have too many ‘ifs’ in it.” But he needed for her to decide for herself,
knowing she might arrive and find him gone, deployed.
With no way to let her know. 

❧ A memory: She drove me back to college after some holiday and walked with me from visitor parking to my dorm. She held my hand as we walked. I was uncomfortable and embarrassed. But I didn’t pull away. One thing I saved myself from regretting much later.

November 27. She got her blood test, a wedding dress, and a train ticket. George writes his parents that Stellajoe was leaving Spokane that night, Saturday, and expected to arrive in Dallas at 8am Monday morning, November 29, after some thirty-six hours sitting up on the train. “Probably we’ll get married Tuesday afternoon.”

❧ We gave her Alexa for her last Christmas. She loved Alexa, and astonished us by being able to summon her. Mostly she asked Alexa to tell her jokes. Alexa kept her company, a voice in the silence. I regret not learning to program her to do more than tell bad jokes.

They “tied the knot” at 6pm, November 30, 1943.
With, in spite of rationing, a handful of rice for the four attendants and guests to throw. 

❧ After she died, and I was going through boxes of her notes and partially used journals and unsent letters, I found one in which she wrote her longing to have a different relationship with me. I didn’t know. We never said the words. We couldn’t let each other in. That is what I most regret. And the well is deep. And maybe it was always too late to pull up that bucket, neither of us were raised to bare our souls. I regret something that could not have been different.

Six weeks later, George deployed. He returned April 25, 1946. 

“I thought I’d come back to give my mother another chance.
I’m starting to think it was so she could give me one.”

JODI PICOULT

❧ I wish I’d taken better advantage of this second chance. And I was too tired just trying to get through the days. But maybe just having a second chance was enough, maybe it was everything. Someone said to me had I only stayed the year I expected, I would not have gained what I eventually found.

She told me, years later, he insisted she use birth control, which she didn’t believe in.
“He was afraid he wouldn’t make it back home from Europe
and didn’t want to leave me with a child to raise alone.
If he didn’t come back, I wanted a child.
To keep a piece of him.”

I am one of those pieces. I wasn’t perfect. But I was enough.

 

Shopping: A Special Place in Heaven

October 2014

I hate to shop. Mama loves to shop. She’s a 98-year-old clothes horse. She bought “well-made” clothes from places like Frederick & Nelson (Seattle’s now defunct subsidiary of Chicago’s Marshall Field’s, also gone). F&N was Frango Mints, the basement Paul Bunyon Room with hamburgers and ice cream sodas, and the animated windows at Christmas of my childhood. It was the top floor Tearoom with white tablecloths where I met my mother for lunch when I was in college. It was also the home of the well-made if not faddish clothes she bought for me and my sisters on our annual school shopping trip to Seattle.

“They just don’t make clothes like they used to. They don’t last,” she told me the other day, for the 4 millionth time. “No one cares if they last 40 years,” I’d said. Mama keeps her clothes—almost every purchase she ever made—in three large closets, three dressers, a cedar chest, and plastic boxes under the bed. Her closet shelf holds dress shoes in their original boxes, relics of the days she wore anything other than sturdy-soled Merrill’s black or brown walking shoes. The rod is filled with dresses, jackets, vests, and fancy blouses she hasn’t worn in a decade or more. In the guest room, even older ones are in plastic garment bags.

She’s been on the hunt this fall for shoes, a warm jacket, and a sweater to replace the Icelandic knit that fell apart winter before last. She brings her purchases home, then takes some or all of them back. It’s a familiar pattern, dating back to my childhood. Michelle took her jacket shopping last week, putting several on hold, then Mama dragged me to the store to see what I thought. She tried on three styles, three sizes of each, with much discussion of the various colors and hats she owns that might go with each. She bought one. She returned it two days later. It wasn’t warm enough.

She finally decided on a pair of shoes—of the six pairs she brought home two weeks ago. When we go for a walk at the Nisqually Wildlife Refuge, she doesn’t wear her new shoes. Apparently the old ones are good enough. I don’t ask why she got new ones, she can’t answer why questions.

After the walk, we go to REI to look at jackets. It needs to be water resistant, although she no longer walks in the rain. It needs to be big enough to wear over two sweaters, but then it’s too big if she doesn’t need two sweaters, and the sleeves on a jacket that large are too long, which seems to outrage her. She got a down jacket I am sure is warm with modern materials, but because it’s not weighty, I know I will be returning it.

Today Michelle takes her to the outlet mall to look at sweaters. She comes home with one, along with a pair of wool pants. If they aren’t wool, they aren’t well-made. She refuses to have pants custom made because she doesn’t want to pay for it, but every year she drags Rebecca (who has warned me against engaging) in the search and failure to find a pair of pants that fit her specifications, including nothing tight around her abdomen, so she buys them so big they droop around her hips.

“It’s not what I was looking for,” she says of the sweater. “It isn’t warm, and it doesn’t close in the front, except for two hooks.”

“Why did you get it then?” I ask, stupidly, knowing she can’t answer why questions.

“I thought it would look dressy with black pants,” she says.

“It would,” I agree. I should not have asked if she needs another something dressy to wear places she doesn’t go. Of course I do anyway.

“I wonder if I have a hat that matches?” she says, ignoring my question.

“It’s blue and black. You have a blue and black wool hat,” I say.

“But is it the right blue,” she says, more of a statement than a question. “Is it a summer sweater, or a winter one?”

“It’s winter colors and summer weight,” I say, trying to answer her questions now without the commentary in my head, pretending I am a witness in a trial, which it feels like.

The next day I’m at lunch with a friend when Mama calls to tell me about more sweaters and pants she and Michelle found that morning. She asks if I could take her back to the Pendleton store to look at another sweater she hadn’t gotten. Two days in a row? I groan soundlessly. “Yes,” I say, brightly.

“I don’t know if I look good in stripes,” she says when she tries it on for me.

“It looks nice on you,” I say, “but what do you want it for? This is more like a jacket and I thought you wanted something warm and cozy for in the house.”

“That’s right,” she says, remembering her mission.

She tries on a burgundy cardigan and the sales woman points out the mirror. “I can’t see it,” Mama tells her.

“Well, how does it feel?” I ask.

“I never liked red,” she says.

“What matters is how it feels,” I say. She takes it off.

I feel amazingly patient. She likes to shop. She likes to buy stuff she used to need. I will get my reward: there will be no shopping in my heaven.

I find a wool cardigan she hadn’t been shown this morning. Zippered. Pockets. Even has an Icelandic-type design like the worn out one. “It’s perfect,” I tell her. She decides to get it. As the sales woman puts it in the bag, Mama says, “I can return it, can’t I?”

From now on, Rebecca—cut from the same cloth—is on shopping detail.

________

You can listen to me read this here!

Generational Caregiving

I have just read a wonderful book titled Mother Lode – Confessions of a Reluctant Caregiver by Gretchen Staebler and I want to tell you about it.

I have been in her shoes with both my mom and dad, so I can relate to many of the things she went through. Although my parents did not have dementia, they were a challenge to care for at times. My mom died much too young at age 74 after having a stroke that paralyzed her on one side. Although at that time my dad was her primary caregiver, at age 77, I was there every day to help take care of her and help him.

My dad was another story. He had always been very independent all his life. He started having problems at about age 96, about the age Gretchen was starting her journey with her mom. I seemed to have the same “love/hate” relationship with my dad as Gretchen did with her mom at times. It was good to read that I was not alone in that feeling. It validated how I felt. My dad passed away peacefully at age 99.

I think all the insights and experiences Gretchen had and her way with words will be a comfort to all who read her book.

My husband and I are on the receiving end of the caregiving journey, where we need some care ourselves. We have 2 daughters and a son in that position now who are reading Gretchen’s book to help them navigate this journey. We are still able to do most things ourselves so far but both being in our mid-80s, there is much we are not able to do. Our health is hit and miss, so that is a challenge also.

I whole-heartedly recommend this book and hope you also will find it very helpful if you find yourself in this position. It is said that 1 in 5 people [are caring for an adult family member], so you see you are not alone.

—Beth Nygren, 85

Opening the Door to Family Conversation

When I wrote Mother Lode, I didn’t give much thought to it being a good read for anyone other than current and future caregivers. Now that it’s out in the world, I am hearing from two other groups of readers. Those for whom caregiving is in the rear view mirror say it has helped them forgive themselves and their care recipient for not being their best selves in challenging times, re-storying their relationship into healing memories. And readers like Ray and his daughter, Bonnie Rae, report that the book has opened conversation between aging parents and their adult children about what is coming down the road and what to do now to prepare for it.
—Gretchen

I am not much of a reader, Mother Lode: Confessions of a Reluctant Caregiver is a must read for everyone, caregivers and care recipients. Most of us will either be a caregiver to our aging parents or be that aging parent, or both, in our lifetime.

My own caregiving experience is limited to supporting my wife Beth during her bout with breast cancer and her MS (Multiple Sclerosis) diagnosis. Both of my parents wound up in nursing homes. As Beth and I age, and become more dependent on our children, we have a greater appreciation for caregivers. This book provides insight into what we can expect as we age, and hopefully helps us be emotionally prepared for what lies ahead. Please consider reading this book. You will not be disappointed.
Ray Nygren, 86

When I started talking about Mother Lode, my parents both took an interest. Intrigued, they ordered their own copy and started reading as soon as it arrived. They each had a bookmark and took turns during the day, reading. And then something remarkable happened. We started talking.

As they got deeper into the story, we had almost daily conversations about what they were reading. Gretchen’s story became the springboard for a lot of new conversation. We talked about what it was like for them to care for their parents and for each other, but then we started talking about their own experiences this past year when they each encountered a health crisis of their own. [As we navigated their need for more care], reading this book led them to a new appreciation for those of us partnering with them.

Somewhere between Gretchen’s story and their own personal story, we started talking about really important things. We talked about the kinds of care they could receive at home and the possibility that as those needs change, so might the need for a different living situation. We have had talks about downsizing and about help with errands and chores. We’ve reviewed their advanced directive and spoken about other health documents like POLST [Physician Orders for Life Sustaining Treatment] forms. Not easy or fun conversations, but another way to love one another.

The most meaningful thing about all of this is that it has helped bring us all closer together. Mother Lode is much more than a memoir. It is a doorway, a hallway, a window. Or maybe it’s a key that unlocks something beautiful.

Read it. Share it. Talk about it.

—Bonnie Rae Nygren (www.insearchofthevery.com)

My Smiling Daughter

These years here with my mother have not brought the connection I dreamed of when I moved across the country. But today, as the sky lightens, I lie in bed realizing that my love for nature, and even for adventure, is born of my mother. The recognition is a beginning, and time is not up.

I rise and move to the chair in the corner of the living room. My coffee mug on the table beside me, I pick up my journal to write from a prompt to start the day. As it usually does when I follow the pen, the words come around to Mama and wondering why, for so long, we didn’t see each other. The pen travels back in time with a force that transcends conscious thought.

For decades, in cross-country phone calls, Mama greeted me with, “Is that my smiling daughter?” I don’t know why it began to irritate me several years ago, but it did.

I have heard the story of my babyhood many times over the years.

Your crib was in our bedroom. When you woke up—early—you stood motionless in the crib until one of us moved a muscle. Then you jumped up and down, rattling the crib, laughing. She decided my identity back then and she was sticking to it. I didn’t have permission to be in a funk, so I chose not to include her in my life when I didn’t tell her over the phone I was ready to strangle one or the other of my children, that their father was out of town again and I was tired of doing it all, that I was lonely, that my period had started and I felt like shit. I wanted empathy, I wanted compassion. But had I told her how I really felt in that moment, she would have been worried about me, given me unwanted advice, and sent me magazine articles, dragging my bad mood farther into the future than its natural life dictated as she tried to fix it.

One day, a few years ago, I had had enough. I couldn’t live up to her expectations and I angrily asked her to stop calling me her smiling daughter. And she did.

As I write this, I realize with a start that when I walk into her room at the assisted living facility now, and she asks who’s there, she doesn’t know what I look like. Me, her smiling daughter! Her eyes see light and dark against the opposite background, and that’s all. I’ve heard her say countless times to visitors: “I can see your shape, but not your face,” but it hadn’t crossed my mind that she can’t see my face. She doesn’t see that my face is aging, that I’m looking more like her every day. Whatever static picture of me she has in her head is all she has. I don’t know what that picture is. Am I smiling?

She did see you, my pen writes. Of course she knew I had bad days back then; but I am generally a happy person, an optimistic person. That is my identity. She has known you from the womb, watched your ebb and flow, and seen you return to your Self again and again. “Is that my smiling daughter?” was her way of reminding me of who I am. It was her way of telling me she had faith that no matter what was going on in my life that I probably wasn’t telling her, I would reach into my core and find my strength. Just as she does. It was her way of being my cheerleader, the mother I wanted.

“Is that Gretchen?” she says, unsure of her accuracy in distinguishing my voice when I enter her room and greet her. I wish she would ask if it’s her smiling daughter.

 

Three Times a Caregiver

From reader Vicki L.

I was a caregiver for my sister for approximately three years before she passed away in 2000 at the age of 47 from complications of diabetes. My sister lived by herself up until her death, but she was legally blind and on kidney dialysis. My mother and I took turns taking her three times a week thirty miles  from home for dialysis.

Then I was a caregiver for my father, who passed away in 2015 from Parkinson’s. My father wasn’t diagnosed with Parkinson’s until about two years before he passed away. Up until then he had been pretty self-sufficient, but we noticed him going downhill. He also had dementia, which was related to his Parkinson’s. While a lot of Parkinson’s patients get dementia, not all do.

Most recently, I helped my mother, who was quite capable of caring for herself until last fall. She was in and out of the hospital and unfortunately passed away in February of this year. She had gotten Covid while recuperating from surgery in a rehab center. She went back to the hospital where she succeeded in beating Covid, but unfortunately Covid took a huge toll on her body and she passed away.

I lived next-door to my parents from July 2007 until my mom and I moved in July 2021. We lived together until her passing. I took her on all of her errands and doctors appointments so we spent a lot of time together.

Tip: Even though I am happy that I was able to spend so much time with my loved ones, you still have to remember to take a little time for yourself. And don’t feel guilty about 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 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.