Maybe you won’t like me. That’s what I thought when I started my “Daughter on Duty” blog about life with Mama. It was private at first, just my whiny journaling going out to a few friends who wouldn’t judge me. Then I decided what the hell, and I made it public. If my words offend you, don’t read it. I’m not writing for you. Caring for my mother—living with her again, for gawd sake—was the hardest thing I’d ever done, including raising children, and I thought that was hard. I was willing to risk vulnerability to tell the truth of how it was, or my truth anyway. Read more
I became a gardener when I bought a house in Raleigh, on my own, and restored the old garden. Up until then, I merely did yard work. I was fifty-five.
I considered myself a writer when I started my first blog and shared it publicly. Before that I was just a journaler. I was fifty-eight.
I called my self a hiker when I returned to the Pacific Northwest and purchased boots and trekking poles and began being brave: solo hiking on steep and sometimes narrow mountain trails. Before that I was only a walker. I was sixty.
And now, I am growing edible food in raised beds I built inside a deer enclosure I built mostly by myself. I take nearly weekly hikes every spring, summer, and fall. And I’m soon officially to be an author. Next week I turn the page to seventy.
My friend Christina read a report that women are most productive in their sixties. Second in line is the decade of their seventies. Third is the fifties. My mother said her favorite decade was her eighties. I don’t know how “productivity” was defined in the study (I’m pretty damned proud of the two children I raised in my thirties and forties), but personal fulfillment definitely gets a nod to the sixties—including, I can say now that it’s in the rearview mirror, caring for my mother the first half of the decade—and I’m intoxicated by this next gateway. There are good years ahead, Goddess willing and the creeks don’t rise.
As I approach my decade birthday next week, I’ve been planning my celebratory summer, which will culminate with the publication of my memoir in October—and the huge learning curve of promoting it. I set a goal to hike seventy miles, but I’m already at 32, so I’ve changed it to 101—one for each summer of my mother’s amazing life—including at least seven new trails. Now I have a true challenge. (I may even have to hike in the rain, if the PNW doesn’t turn itself around.) And I’ve just completed the reveal of my carefully-guarded Secret Big Thing.
So here it is:
One of my (few) life regrets is that I didn’t spend a college summer working at a national park. Yesterday—serendipitously on the 106th anniversary of my mother’s birth—I did the first training step toward being a volunteer Meadow Rover at Paradise in Mt. Rainier National Park. On-the-trail orientation is July 25—hopefully the snow will be gone by then. I will wear a uniform shirt with a name tag and insignia, and carry a walkie-talkie (!); and, I learned yesterday, a clicker to record visitor contacts! (Laughing.) I will hike the trails, being friendly to the Park’s many visitors from all over the country and the world (did you know MRNP is the fifth oldest national park in the country?), educating them on best practices, answering questions, offering information, preventing emergencies, and calling for help if they happen. It’s a departure from my avoidance of crowded trails and my preference for silent hiking. But hey, I’m seventy! It’s time to stretch.
A long-time Meadow Rover recently retired; she was in her nineties. I’m off on a Big New Adventure. Who knows how far it can go. There’s no expiration date on a dream.
My mother was born the same year the National Park Service was born. Happy birthday, Mama. I hope you are proud. I am.
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?
- Center: focus on breathing, count to ten, go to an alpine meadow in your mind (and in reality whenever possible).
- Take a minute and move: don’t you suddenly need to use the toilet or feed the cat?
- 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.”
- 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.
- 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.
It’s the ultimate spring cleaning, and I’m not talking spiderwebs and dust. I’m cleaning out the overflowing basement room that has been storing the ephemera of my parents lives for the nearly sixty years they lived here.
When my parents migrated across the country in 1946, after the war, they must have brought only what would fit in the boxy Chevy. Camping gear, a few clothes; maybe precious wedding gifts, some hand-me-down kitchen items, my mother’s typewriter. The rest was probably shipped in my uncle’s Army footlocker (which is still in the basement). After thirteen years and three children, when they built the house I am living in now, their collection had grown exponentially. Sixty years after that, well, nearly everything I need I can find in some cupboard, drawer, or box. As children of the Great Depression, and my mother’s family’s hardscrabble existence even before then, they were both keepers. Of everything.
I started in the back corner of the room during the dark days of the second Covid winter. I cremated and scattered the remains of one of my mother’s unrealized crafting dreams: dried flowers and leaves, boxes of them pressed between paper towels and the sheets of newspaper or pages of magazines. I created a memorial craft for my sisters for Christmas with batik trials and tiny beach collectibles, and emptied boxes of more beach stones, shells, and driftwood into the memorial garden I created years ago. I threw out dried up homemade fabric dyes, snapshots of people I didn’t know, old wrapping paper, boxes too small to save. I found homes for fabric and for crocheted doilies and granny square afghans my Granny made. I took ratty blankets—stored in barrels kept from the 1960 move—to the animal shelter. I recycled, donated, and did my part to populate the landfill.
I saved children’s artwork, letters my sisters and I wrote home from camp and college and first homes, old family photos, a box of remembered cookie cutters, our childhood play dress-up clothes, the doll collection, and war memorabilia to explore with my sisters. On task for one day, when the oldest sister came across the country for a visit, we didn’t nearly finish what I had saved for us to do together.
One day this house will be sold, and the prospect of waiting for that time to come and the burden of having to do it at a point in my life that I may not have the energy for it, has weighed physically on my shoulders. Headway has been made. And there is so much more. Stories have been written and photographs taken to store in the Cloud; someday I will make a family book.
My mother said she wanted to get the house cleaned out, but I’m not sure getting it gone was her goal. One can only speculate what going through it meant to her: did she want to put hands on it again and remember? Did she want to tell us stories? Did she want to make sure it was all labeled? Did she want to tell us or leave a note about whom she wanted to have things? What I know is, it was maddening to those of us who tried to do it with her, particularly when she could no longer see. We were impatient. She told few stories (or we never got to the things with stories and now they are lost), and nothing left the house. I wonder if wanting/needing to get it done is why she stayed alive so long. And if not being able to face it is why she stayed in the house, stuck here by stuff.
In hindsight, when she asked over the years if we wanted something, we should have said, “Yes! Thank you for saving it for me.” Then taken it from her hands—off her hands. It would have made her feel vital, one last piece of good parenting affirmed: she kept the treasures for us. We were then free to do with it what we wanted. Maybe she labeled so many things for one of us or the grandchildren because she knew we would say no if she asked if we wanted it. Labeling things and returning them to box, barrel, or shelf kept her heart from being broken.
What to say about this process? It’s both blessing and curse, burden and bonanza. It’s a reliving of days past, remembering a heart-full of people gone, physical proof of a mother who loved her children well—and who had a life before and beyond us.
After months of cleansing, I can almost imagine we can save the next generation from the task. The million dollar question: what will be the loss to them?
You can read more words (in ten parts, so far) and view the photographic evidence on my blog at writingdownthestory.com. Search “Excavating a home.”
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.
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?
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.
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.