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Siblings Caring for Parents—or Not

Three caregivers sent their stories via the website recently, each touching on help (or not) from siblings. What is your sibling story? Do they participate or not? If so, what role do they take? Have you done anything to bring reluctant ones around? How do you cope? Send your story on the contact page here.

 

My sister gifted me your book, Mother Lode, this Christmas! When our house was finally quiet, Christmas “packed away,” I picked your book up, and could hardly put it down. I cried and laughed, hurt and rejoiced in your journey with your mother as it mirrors so much the struggles we are having with our mother (and father to some extent). I retired over 2 years ago and moved closer to my sister to help care for our “old-old” parents. They lived with me in our home across the street from my sister, until last April, when it was time for Assisted Living (our mother’s decision). They are 92 and 94, both with increasing dementia.

Your story gives me hope.
Sarah R.

 

A friend gave me your book as I have been taking care of my 94 year old mother for years. The stories about your mother are so familiar. Sadly I don’t have a “Rebecca” as my three siblings do not participate. It is endless and exhausting. Your book gives me comfort, knowing I’m not the only one. Thanks for all you did for your mother and for sharing the experience to connect to the rest of us.

Very best, Susannah H.

 

The decision to make sure Dad lived in his own home until the end was an easy decision for my siblings as none of them intended to take care of him. One sister lived four hours away and far from retirement in a job she had held for almost 30 years. Second sister lived in Florida. Brother lived across the field from my parents but was not emotionally mature enough or financially able to provide any help (and offered none). I stepped up because I was retired and financially secure. Dad’s home would had to have been sold in order for him to afford living in any type of memory care (with Alzheimer’s). He also had prostate cancer and was being treated for both that condition and dementia, high blood pressure. The home was not ready for sale and my dad was cognizant and able to take care of his personal needs in the beginning. It would have been heartbreaking and met with considerable resistance to sell the place and place him in care. My siblings were very willing to let me take charge and live with dad as long as their inheritance was not touched. It became clear it was an important factor as I asked them about paid care for dad. None of them were willing (or able) to bear those costs, but didn’t want to give up their “stake” in the estate. It was easier for me to live with him full-time.

S.S.

Conversations with Dementia: The Leaky Kitchen Sink

The sink is leaking. I stopped Michelle from pointing it out to Mama this morning just as she opened her mouth to repeat what Mama, thank God, didn’t hear the first time. After dinner, Rebecca and I notice there is water puddling in the cupboard under the sink. While Mama gets ready for bed, Rebecca and I clean up it up and take the linoleum liner out to the deck so the cupboard can dry. Mama comes in, and we hustle to get it back together so she won’t notice, knowing she will obsess over it and she has already had an upsetting day. But we inadvertently leave a basket of cleaning supplies in the sink and it’s too late to move it without being obvious. We aren’t worried, she is just heating her rice bags in the microwave and has no reason to walk over to the sink. She walks over to the sink. “Damn it,” I breathe. Rebecca tells her it is leaking a little, but we are taking care of it.

“You don’t know what needs to be done,” Mama snaps, “turn off the dishwasher!”

It is clearly the sink faucet that is leaking, but Rebecca obliges.

Rebecca says she will call her plumber. She tells Mama he will probably call in the morning. She goes home and I go downstairs.

I return upstairs when I hear Mama in the kitchen. Wearing her nightgown and walking shoes, she has her head under the sink peering around with a flashlight.

“You didn’t put the bucket in the right place,” she says.

“We put it the only place it could go and still catch the drip, which it is doing,” I say.

“And the pipe is wet,” she says.

“Yes, that’s why there is a bucket.”

“We should turn off the water,” she says.

“It’s just a slow drip,” I say. “It will be fine.”

“And the bottom of the cabinet needs to dry.”

“That’s why the linoleum is outside and the cupboard doors are open.” I tell her the plumber called and will come on Monday. “He said we did everything right. It’s not an emergency, the bucket will catch the drip until he comes.”

“I thought he was going to call tomorrow,” she says.

Tomorrow I’m going hiking.

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.

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)

Alchemy of a Memoir, Pt. 4: Choosing a Cover

If it’s possible to identify a “hardest thing” about publishing a book—and there are many things that were harder than actually writing the book—I might choose picking the cover. It’s the first thing potential readers see, whether on a screen, in a bookstore, or in the library. It  conveys the genre, the writing style, the book’s personality, and the story  to be discovered. We do choose a book by its cover. No pressure here. This is how it went down.

First step: Input

The She Writes Press cover design team asked for a detailed synopsis of the story from beginning to end  (with spoilers), ten adjectives that describe the book, the main characters and what they look like, the story’s emotional mood, an object or place that captures the themes and tone, the book’s message and how you would like the reader to feel when they read the last page page, photos of book covers you admire . . . Oof!

Second step: Narrowing options

Some weeks later, I received ten possible designs. I opened the file eagerly, interested in what they came up with. Too trite, too white-skinned, not this story, not my mother. Then I got to the ninth one: a ripe, red tomato smashed against a white background, its juice and seeds flying. Now that told the story, and most importantly, got my attention.

I picked four others that were not impossibly wrong and sent them to a few trusted friends and family for opinions. (Which, I learned later, the publisher did not recommend doing.) Family liked Smashing Tomatoes. Everyone else rated it last choice. “Too bloody,” one said; “It was bloody,” my sister said. Some liked the lily white hands reaching for each other. “Too white,” one said. “Too ‘hand of God,'” my sister said.  “Wrong hands,” I said. They were mine and my daughter’s hands. Stock photos don’t include 16100-year-old hands, which I think are amazing but no doubt make many  uncomfortable. Some liked the string bag of tomatoes. Food was definitely a theme in my mother’s and my life together, and there is a tomato story in the book. I could have asked them to start over, but I decided to go with the grocery bag idea.

Third step: Revisions

I use cloth grocery bags; I don’t own a string bag. I needed the cover to be recognizable to my reality—one reason I rejected the two covers that included an elderly woman that was not my mother and the hands that were not our hands. I found a stock photo of a cloth bag of groceries (not just tomatoes) with a hand coming from the top edge, the bag straining with the load, and sent it to the publisher. “Something like this?” I asked. “No place to put the words,” they said. Also, the hand was white, and I really did want to steer clear from making my story exclusive. Caregiving does not have racial bounds.

They sent some options, one with a paper bag at the bottom of the page. I wasn’t crazy about it, but I didn’t like the others. As a new author, I didn’t know how much push they would tolerate, and I was loathe to be the difficult client. I wanted them to like me. I had read that traditional publishers don’t necessarily give authors any input at all, so perhaps I was lucky. I suggested adding chocolate and a bottle of wine, a request they didn’t respond to. They don’t, I supposed, employ actual artists.

Fourth step: Making a decision

I said yes . . . to a paper bag with groceries at the bottom of the page, that I didn’t love. I wanted to love my cover. I asked for a different font for the title; the block letters weren’t doing it for me. They complied.

Fifth step: Living with the decision

And that was it. My book was going out into the world, to be seen across the internet, and hopefully on brick and mortar bookstore shelves, with a baby-blue cover, orangey-red title font, and a bag of groceries. It’s like naming a child. Once you sign the birth certificate, that is their name forever, or until they are old enough to change it. There are no do-overs.

Last step: Learning to love it

It’s been five months now, and the cover has grown on me as I consider it symbolically. The vegetable lode is arranged in a careful balance. One slight tilt of the bag, and they will topple, ripe tomatoes smashing on the floor. And is the loaded bag sinking off the bottom of the page, or is it rising from the depths? You’ll have to read the book and decide for yourself.

When my daughter-in-love was creating art for my book trailer (you can view it here, now it I love!), I asked her to add wine and chocolate to the bag, for my personal use, and to make them clearly not look like a photograph. I didn’t want anyone to confuse it with the real cover. It makes it perfect. Just before the book went to the printer, I made one more plea to the publisher to include wine and chocolate. She said no, it couldn’t be done to match the rest of the image. Yes, it could have, with artist skill and an amazing computer program, it could look indistinguishable. I let it go.

The Beginning

A book is born, with a cover! Coming October 18 (officially)  and available now for preorder wherever books are sold. (See special offer and links here.)

For posterity, here is my working cover (and title) for years, and the cover with wine and chocolate (as featured in the trailer opening). You can view the trailer, which I really love, here).

Alchemy of a Memoir, Pt. 3: Choosing a Title

The title of my blog was “Daughter on Duty,” and I laid bare on the screen how difficult both caring for my mother and living in her home were. I wasn’t shining a very good light on myself, but that was not my point. I was on duty, I was trying to stick with it, and I was tired of an adult lifetime of stuffing my feelings. I didn’t care who thought I was a terrible daughter.

When I dreamed that my story could be a book (read that story here), Christina Baldwin, creator and facilitator of the writing retreat I signed up for my first winter, gave me the title: Mother Lode. I loved the double meaning, the play on words. The load of caregiving brought me to tears on a daily basis, and turning the experience into a vein of gold was the carrot dangling in front of me, compelling me to see it through.

As I worked on the book over the next ten years, including at four alumni writing retreats with Christina and the new and old friends I met there, along with a magical week at Hedgebrook, another women’s writing retreat center on Washington’s Whidbey Island, I kept the title in the header of every page, reminding me of my goal, both the experiential one and the writing one.

As the manuscript took form, moving beyond strung together blog posts, the narrative arc revealed itself. I added the subtitle: Finding Myself in My Mother’s House, and a second subtitle so potential readers would know what the story was: A memoir of caregiving. It was a little unwieldy, and I knew I was getting way ahead of myself, but I needed to envision that this really could happen, that it wasn’t just another of my pipe dreams let go of mid-development. I began writing toward the idea of finding my Self.

She Writes Press accepted the book for publication (read that story here), and I learned they had just started changing titles of their authors’ books. Another case of “killing your darlings,” I supposed, a well-known editing trope, “If you love it too much, it probably needs to go.” I held my breath, waiting to hear from them.

“We like the title,” the publisher wrote, “but we don’t think the subtitle says enough.” The team sent several possibilities.

I really hadn’t wanted to let go of Mother Lode; I was relieved. I supposed it could use a catchier subtitle, but none of the suggestions they sent felt right. I made a list of the themes in the story. I talked to my writing group who threw out ideas. She Writes sent another idea or two, which I rejected. I finally came up with “memoir of a reluctant caregiver” and they accepted it, maybe to get rid of me. I didn’t love it, but it would do.

A day later, “confessions” popped into my head. The publisher liked it a lot, and so did I. We had a title. Mother Lode: Confessions of a Reluctant Caregiver.

 

Next up: Choosing a Cover

 

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.

The Typewriter and the Blog

My mother’s Remington Rand manual typewriter sits on a cabinet near my desk. She made her living with a typewriter as a young woman, and then as she waited out WWII for her husband of six weeks to return from Europe. The old typewriter represents a connection to my mother that the electric one I learned on did not, and the laptop I use now can’t begin to. I picture her typing dictation at her desk on Air Force bases during World War II, waiting for the war to end and her new husband to return. She tried an electric typewriter in later years, and a word processor that my father learned to use, but the touch on both was too sensitive. And so she stuck with an enormous manual machine that replaced the small one (and is also still in the house). I still hear the clickity clacking as she typed her own letters to the newspaper editor and complaints of grammatical errors to Time magazine for my father. The Remington Rand is the header on my Facebook writer page and is the photo behind the blog link on this website’s home page. It grounds me. It brings her back to me.

I learned to type in a six-week summer course in high school—missing two weeks to go to a Girl Scout event. I typed college papers on an electric Smith Corona with an erase ribbon and, a few years later, my husband’s master’s thesis (twice) on a rented IBM Selectric. When it came time, in the early 1980s, to type his doctoral dissertation, I entered the first draft on a keyboard on campus where it went to a room-sized “computer” in another building. When my family finally got a home computer around 1986, I fell in love with typing for the first time.

The turning point in my writing life was the first writing class I took, in mid-life. It was a six-session adult learning course at a local college. Near the end of the course, the teacher casually mentioned blogging. It was 2010; I had never read anyone’s blog, nor considered that I might have something to say in one. But the comment changed my life. I didn’t have to have a tower room, write books, or aspire to finding a publisher to be a public writer. I almost immediately stopped keeping a hand-written private journal and switched to—hopefully—more inspired writing. When I moved “home,” across the country to care for my mother in my childhood home, I switched from writing about the garden to writing about being a family caregiver. When my mother died, I started another new blog about my adventures in the Pacific Northwest; and I turned my Daughter on Duty blog into a book, Mother Lode: Confessions of a Reluctant Caregiver, typed on a MacBook Air.

A casual mention of blogging. It changed everything.

You can read my very first blog post here.