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Where is Home at the End of Life

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“Perhaps home is not a place but simply an irrevocable condition.”
― James Baldwin, Giovanni’s Room

__________

The rural house sat at the end of a fork of the south bay of Puget Sound. It was an unremarkable house, but exiting the backdoor, like the closet door into Narnia, my first childhood home was anything but ordinary.

Through the wooden screen door and down the steps, past the lattice-fence that divided the tamed yard from the less-tamed yard—the posts catching falling snow in a pot to be mixed with sugar and vanilla in winter and disappearing under my mother’s trailing roses in summer—beyond the huge homemade swing set and the outdoor brick fireplace my father built, between the log cabin playhouse and the muddy flats of the bay at low tide, lay the woods. I spent long summer days in that strip of trees where make-believe flourished. In the front yard, my sister and I waited for the bookmobile, the borrowed books flaming more imagination. Kids and fathers played softball in the field next door and little girls played restaurant in the neighbor’s abandoned chicken coop.

We left that home when I was eight, the thirty miles of interstate between it and my second home bisecting my life into its first before and after. I lived in the new house on the side of the hill the remainder of my childhood. But the home by the bay remains irrevocably my soul home, the one I will remember when memory eludes me.

__________

My mother lived in fourteen houses with her family of origin, her father following work and running from creditors. She moved, alone, across the country for a civil service job as World War II began and relocated several more times, waiting for her new husband to return. Her dream, she tells me decades later, was to stay in one place.

She got her wish. After the war, she and my father bought the house I was born to and lived there until we moved to our hillside house, where she stayed for fifty-five years.

__________

My own nomad years began in adulthood. I had five brief stays between college and moving across the country as a newlywed. I moved nine more times before returning to my family home to care for my mother, where I’ve lived again for a decade—as long as I lived here the first time, longer than I lived in any house in the forty-two years between.

I was sixty-four, when, after four years of accompanying my mother, I reached the end of my line. I couldn’t care for her in her home any more, a role I had reluctantly taken on in the first place. Would she have to leave the place that, like my first home on the bay, was the one locked in her soul? If we moved her to assisted living, did that make me a disloyal and selfish daughter? Would I be breaking a promise I hadn’t made? I had already stayed three years longer than I committed to. Was there another way? My one hundred year old mother struggled with me living with her, I think; and she battled against the few hours a week paid caregivers were in the house. Was it harder to have someone in her own home—where she had been queen of the castle for more than five decades—than it would be if she moved one more time? Nearly five years after her death, I’m still questioning myself.

When Jacinda Ardern, Prime Minister of New Zealand, resigned unexpectedly in January 2023, she said, “I am human, politicians are human. We give all that we can for as long as we can. And then it’s time. And for me, it’s time.”

Ardern’s resignation made me think about caregivers, the limits of our service. What happens when we realize we no longer have the energy to continue? Can we resign? Are we obligated to continue in the way we had been? For how long do we pressure ourselves not only to physically but emotionally sacrifice our lives in favor of a parent’s or other loved one’s perceived happiness? I knew what I needed. I needed my life back. Did I have the right to reclaim it? I decided I did.

Moving our mother to assisted living seemed like the best of problematic choices. But my sister and I didn’t abandon our mother. Caregiving is a group project and children can continue to be project managers without being responsible for all the tasks that are necessary to provide good care at home. The job became more equal between us. My mother adjusted. I got my life back.

After more than six years of accompanying her towards life’s end, my mother and I finally were approaching the closer relationship that I had hoped for when I moved in with her. But it’s only been recently that I realize all the forward movement, every bit of it, happened after she moved, when I became just her daughter again. If I have regrets, it’s not that we moved her from her forever home, it’s that we didn’t do it sooner. I wish there had been more time.

I have been sad we didn’t bring her back “home” to die as we promised ourselves we would to get us across the decision bridge, but is it practical and how does one time that? In retrospect, I think it would have been disorienting and stressful. The hospice nurse said she was home, the place that had become familiar; and she was in her own bed, the one she had shared with her husband.

Everyone says they want to die at home. What does that mean? I am contemplating the question for myself, to make known my hopes to my own children. And I am considering it now, at seventy, while I am, hopefully, far from the need. I’m considering it in the light of having been the giver of care. I hope not to be in a hospital, with bright lights, beeping machines, an unfamiliar bed; but if that is what happens, I can live with it . . . or die with it. I don’t want my children to sacrifice their living to keep me in any particular place. I want to free them to be my beloved children.

They are my home. Home is inside me in all the places I’ve been and the people I’ve known; playing in the woods, rolling down slopes of grass between beds of pansies and violets, waiting for the bookmobile.

I think my mother was home too. I have made my peace.

__________

“For many patients, ‘home’ isn’t the physical place. It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”
— Dr. Haider Warraich, author, New England Journal of Medicine study

Worrying in a Snowstorm

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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.

Opening the Door to Family Conversation

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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)

All the Time in the World, Part 2

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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

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Summer 2012

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

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

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

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

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

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

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

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

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

The Giraffe in the Back Yard—Arguing with Dementia

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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.