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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

Generational Caregiving

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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

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

I Hear Birds. All the Time.

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Hearing loss is one of the myriad ways I’m beginning to align with my mother.

For years, my mother had life-disrupting tinnitus, until she became completely deaf in one ear and critically impaired in the other. (Or maybe she became deaf and thus the tinnitus.) She avoided places where there was noise, it made her head roar. Noise was everywhere. She wore noise canceling headphones—the kind airport employees wear on the tarmac—in the shower, out in public, in the kitchen. She stopped listening to music. I always wondered if the headphones were counterproductive, trapping the sound in her head, like putting a conch shell to your ear. I never asked, I just trusted she was doing what helped mitigate it for her. I lived far away then, and was less tempted to try to “fix her.”

By the time I came to live with her, deaf in her right ear and without the hearing aid in her left ear, she heard nearly nothing, neither external nor internal. At least she no longer talked about the internal if she did, and she would have.

I marked the last year of my sixties with my own set of hearing aids. I had been asking certain people to repeat what they said to me often enough that it annoyed them. I put it off for a long time. I’m not sure why, really; mostly inertia. The expense. Then Covid. There is stigma attached to hearing aids, though it didn’t bother me what other people thought. I’ve worn glasses since my early twenties, why are hearing aids different? Except they are. People start losing vision at any age, but hearing loss seems mostly relegated to the aging. Maybe I didn’t want to acknowledge to myself that I was moving from middle age to late age.

I finally took the plunge and went for a test. My doctor referred me to the same Ear, Nose, Throat practice thirty miles from home that I had taken my mother to so many times; I felt myself starting down her path. “Do you hear ringing or roaring?” both the audiologist and the doctor asked. “Not really,” I said. “Maybe a little when it’s really quiet,”—giving credence to my doubt that my mother’s response to tinnitus was to do everything in her power to cancel all noise.

The good news is, the hearing loss is mild, and—unlike my mother’s—equal between ears, consistent with normal aging. As I suspected, I have lost the upper pitches, which is pretty much how typical hearing loss happens. The bad news is, I still can’t hear the people I couldn’t hear before. I’m beginning to have more sympathy for my mother. Don’t mumble, don’t talk to me with your back turned, it’s not volume so much as enunciation, adjust to what you know I need. Care.

The other bad news is, I hate them. I can’t tuck my hair behind my ears, the space is already occupied. The helix of my ears are working hard for me. (I had to look that part of the ear up.) I can’t figure out which fashion accessory to attach first: glasses, aids, or mask. I have to be careful when I remove my mask that the aid doesn’t fall out. In yoga, the first time I wore them, my mask kept falling off. I spent more time putting it back over my ear, and putting the hearing aid back, than I did in downward facing dog. Which was no great loss.

And the battery dies at inopportune times. The audiologist failed to mention that the cool app on my phone, where I can change the volume and check the battery life, is not reliable for replaceable battery aids, only for the rechargeable ones. And the little doodad that picks up the sound fills with wax, and I can’t hear until I replace it, regardless of battery life. It fills with wax because I hardly ever go out, and I don’t wear them at home. My ears continue to recognize them as foreign objects and protect themselves with wax. As soon as I’m home on the rare outing, I take them out—like taking off a certain female undergarment. It’s all super annoying.

But back to the tinnitus. I’ve started hearing birds twittering. Birds, I thought, how nice! And then I realized I was hearing birds all, the, time. Inside the house, with the windows closed. Uh oh, I thought, I bet it’s tinnitus. I checked WebMD, my favorite go-to for health questions. Symptoms include hearing ringing, buzzing, roaring, hissing, or whistling. Nothing about twittering. I guess one could do worse than hear birds. It’s starting to get really irritating though, mostly because how do I know when it really is birds?

I read of something that might help temporarily diminish the noise: Place the palms of your hands over your ears with fingers resting gently on the back of your head. Your middle fingers should point toward one another just above the base of your skull. Place your index fingers on top of your middle fingers and snap them (the index fingers) onto the skull making a loud, drumming noise. Repeat 40-50 times. Repeat several times a day for as long as necessary to reduce tinnitus.

A test drive of the technique might have helped. Or maybe it was just that the headache it gave me was distracting.

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I’ve had the darn things for almost a year now. I still hate them. I’m not ready to stop wearing my mask (and perhaps I should have gotten around the head ones, rather than ear loops), but when I am, maybe that will help. There’s still the hair behind the ears thing though. Someday I will cut it short; the aids are here to stay. Meanwhile, hears [sic] to the birds. Or is it spring peepers I hear now?