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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)

Hail to the Kale Salad

The Story

There was much Mama could not eat, due to her digestive issues, but she was long devoted to dark green leafy vegetables for eye health. I don’t know that it mattered, in the end, her vision all but completely gone. But maybe it put off the inevitable for a while. At one visit to her long-time macular degeneration specialist, he curtly dismissed her fears of going blind, saying, “You will never be blind.” I raised my eyebrows, and Mama didn’t buy it for a minute. Perhaps he would have been right had she not lived so many more years.

I was not a fan of kale, but I learned to cook it for her. (Goat cheese makes all things edible.) She couldn’t eat it raw, of course, and I had no interest either. Until, my first road trip after her death, a friend and I went to the Redwoods. On the way back, in Bend, Oregon, we discovered Hail to the Kale salad. It’s a summer staple now.

There isn’t really a recipe, just the ingredients from the menu. I alter it as I please, adding and deleting ingredients, and you can too. (P.S. There are many Hail to the Kale recipes online. Google is your friend, though I haven’t explored them.)

The Recipe

Curly kale, massaged (Google it)
Brussels sprouts, sliced thin
Cabbage, sliced thin
Carrots, julienned
Green apples
Quinoa
Candied walnuts
Cranberries
Balsamic dressing

Additions: goat cheese or feta; avocado; mango; salmon, pan-seared tuna, or chicken

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.

Mug Brownie

The Story:

Sometimes you Just. Need. Chocolate. And you need it NOW. But you really don’t need a whole pan full. When I lived with my mother, my little suite in the basement didn’t have an oven or a stove, just a microwave. I used the kitchen of course, but sometimes I just wanted to stay in my own space. I tried lots of microwave mug brownie recipes, this is my favorite because it makes its own sauce . . . if you don’t overcook it. Be sure to use a really big mug, or you will have a microwave mess. More importantly, you won’t have a chocolate fix.

The Recipe:

Ingredients:
3 tablespoons flour
3 tablespoons sugar (2 T is enough, in my opinion)
1-1/2 tablespoons cocoa powder
1/2 teaspoon baking powder
3 tablespoons milk
2-1/2 tablespoons oil (or melted butter)
1/4 teaspoon vanilla. Or rum. Or Kahlua
1-1/2 tablespoons brown sugar
1 teaspoon cocoa powder
4 tablespoons hot water

Instructions:
In a small bowl add the flour, sugar, 1st measure of cocoa powder and baking powder and stir well.
Add to this the milk, oil and vanilla essence and and mix until fully combined.
Pour into a microwave proof oversized mug or dessert bowl (it will rise during baking).
Sprinkle over the brown sugar and second measure of cocoa powder.
Carefully pour over the hot water. (Do not stir.)
Cook in the microwave for 1 and a 1/2 minutes (or less), remove carefully, it’s hot!
Serve warm with whipped cream—or ice cream or chocolate sauce!