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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.

 

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

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.

 

It’s the Moments

We do not remember days, we remember moments (Cesare Pavese, Italian writer).

My mother was passionate about her rice bags. Each evening—and afternoon when she began napping in her bed—regardless of the season, she’d microwave-heat one for her feet in spite of wearing socks, one for her knees, and one for her right arm on the window side of the bed. At eighty pounds, she was always cold. At least that’s the reason she gave, or that I assumed.

A few years ago, my daughter-in-law made fancy rice bags for Christmas gifts. The past two winters—Covid winters—I’ve become attached to mine. Yes, the foot of the bed is cold (and I do not wear socks), but it’s warm after about a minute and I move the bag up to hug in my arms. It’s not the cold, it’s the comfort. It’s like my tight-fitting fingerless gloves, the weight of the yoga blanket across my mid-section during savasana, the electric fireplace near my desk in the pre-dawn morning, the heated seat in my car, my hand knit throw across my legs on the sofa in the evening, my cat Lena snuggled close to my legs at night. It’s not about cold. It’s comforting. I don’t think my mother would have articulated that’s what the rice bags were for her, but now I wonder.

How she must have missed my father all those years. Never a pet person, she had nothing after he was gone. I suppose she had gotten used it—alone is not lonely, living with someone who is distant is. And I expect she was more lonely after I arrived on the scene. I find myself wishing I could have laid down beside her in bed, rather than impatiently waiting to get her settled in bed so I could retire to my quarters in the downstairs suite for the evening. I wish I could have provided the intimacy of my presence in a way I had not since I was a child. And now I’m wondering about rice bag comfort.

Notice I say I wish I “could” have, not I wish I “would” have. Subtle difference, but I am not so far removed from the reality of the years with her that I have forgotten what I was and was not capable of. Even had I thought to climb into bed her—had she even wanted me to—I could not have. If I could have, I would have, but we were not emotionally close enough. I did not have enough love. There, I said it.

This is why my memoir does not include the perspective of the look back. It would not be an accurate depiction of the days in the trenches, it would be too easy to change the story. My mother changed the story of the years she cared for her mother . . . but that’s another story. We do the best we can—and even with all the knowing that someday we will look back and grieve, it’s impossible to apply the future to the present. When we are so tired it’s impossible to really understand the surety, even, that some day this parent or this partner will be gone forever.

What we can do, though, is notice the moments: right now I am holding her hand, right now she is saying she loves me, right now I am describing the sunrise to her, right now she is telling me a story of my infancy. Right now there is a moment to cling to. Right now I am her rice bag. When I’m bashing myself for all I did not/could not do, the words I wrote then remind me: there were many moments; I was not a terrible daughter.

Waking up in a Foreign Land without a Map

Reader post by B.R.
Posted: March 12, 2022

I’m not going to sugarcoat any of this. I’m wide awake at 1:30 am after a dinner of Good n Plenty and turkey casserole several hours ago. My hair is matted with dry shampoo and my worry gene just shifted into overdrive.

On Valentine’s Day, I took my Mom to the hospital for a TAVR procedure. A new heart valve with an overnight stay as a precaution. They came out after surgery and said all went well. Relief. Until it wasn’t. An hour and a half later they came out again and said there had been a complication. What? They offered to let me go back to see her . . .

I passed out that day on the floor of a Tacoma hospital’s surgical recovery room. It’s not every day you see your mother being rolled out the door toward ICU after suffering a complication from heart surgery. I was not prepared for what I saw. My own heart raced, I got lightheaded, and down I went. It was my initiation.

Welcome to caregiving.

Since that evening, my Mom has spent 12 days in the ICU/PCU and I was airlifted (figuratively) from the recovery room floor and dropped without supplies into a foreign land. I don’t know the language, I haven’t the right tools, and there is no map. I’ve been blindly wandering along the side of a cliff ever since.

The first hospitalization was three nights. She was discharged home from ICU and it was too soon. Covid made the concern over staying in ICU equal to the concern of coming home.

You don’t know what you don’t know. This isn’t caregiving, it’s firefighting. Every day there are dozens of fires to be put out. Here is my list today after her second homecoming:

Did I brush my teeth?
Take my pills?
Has she had breakfast?
Did I use the gait belt?
Is her BP taken?
Should I worry?
Temperature? Normal?
What drugs get taken in the morning?
What are they?
What are they for?
Should she still take them?
Why the hell is she taking them to begin with?
Have I remembered to measure fluids?
Why are they restricted?
Is she dehydrated?
Should she be this tired?
Is there confusion?
Are there appointments today?
Should I be calling the PT?
Is today the day the nurse comes?
Was I supposed to call OT?
Is the shower safe?
Is there mail?
Is someone looking at bills?
Are the dishes done?
Did I start the laundry?
Do I have enough socks?
Does my dog miss me?
Is there any food to eat?
Do we need shopping help?
Is the diet heart-healthy?
Have we exercised?
Is the sun out?
Have the birds started nesting?
Did the hummingbird feeder freeze?
Is the furnace working?
Is she warm enough?
Did the shows get taped?
Have I forgotten anything?

How does it all get done?
Will it always be like this?

Are there tricks?
Magic?

Fires.
In a foreign land.

Send hoses and help.