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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

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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.

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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.

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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.

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“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

“NanaNana, Hey Jude”

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A story of long haul caregiving.

I finished reading Mother Lode this week amid a hail storm of memories. My mother is 96 and living with Alzheimer’s. I have been her part-time caregiver for about fifteen years. Like so many mothers of the Greatest Generation, she is a survivor. Having fought life-threatening cancer three times, starting at age seventeen, it is a miracle she is here at all. Her last battle with cancer, including CyberKnife therapy, left her frail and dying. Her oncologist said to call hospice and that she had four to six months to live. That was almost twenty years ago.

My mom’s memory loss had such slow progression we could almost believe it wasn’t happening. When paranoia and confusion started popping up, I took her to a neurologist. I was with mom each time she was given a memory test so I was able to note the changes along with her doctors. I was with her in the difficult times when she thought someone stole her purse (lost and found at Safeway), stole $50 (found hidden in a tissue at the bottom of her tool box), stole her false tooth (who steals a tooth?), stole her hearing aid (only the right one), etc, etc, etc. . .  I was there when she wandered off at night and was found sitting on a bench outside, lost and cold, in the dark. I was there for hundreds of hilarious and completely maddening “who’s on first” conversations similar to those related in Mother Lode. I was there when she when was taken to the hospital multiple times because she thought the cancer had come back. I was there and made the difficult decision to move her to memory care.

Although I didn’t live with mom, I have been on call day and night for years. Now that she is in a 24-hour memory care center, the chaos has leveled out. We both have some breathing space. Sometimes I worry about my parents’ savings being eaten up to pay for her care, but I believe that’s the best use of the money, and I feel fortunate that she can afford it. If she’s still here when the money runs out, we will figure out what to do. It can’t be harder than what we’ve already been through.

My mother calls this time she is living in now her “grace period.” I think of a grace period like a coda in a musical piece that finishes a song. “Hey Jude,” the Beatles song, has a coda that repeats “nana na na” for four minutes. Mom’s coda happened to come with Alzheimer’s and coincide with my retirement, my buying a new house, moving myself and my mom, and Covid. The last two years have been like a record stuck on “nana na na.” And just when I think I’m going totally crazy, I start singing along.

—Jane W.

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)