Caring for a parent, Death & Dying, mother daughter relationship

Courage—A reprise

The following is a post I published on Martin Luther King, Jr. Day in 2013. I had been living with my mother six months and had just begun this blog. Almost everything has changed for Mama now—and for me. But her courage remains.

Today is Martin Luther King, Jr. Day, a reminder that the Civil Rights movement was written on the backs of the courageous, both individually and en masse. I have no memory of the events of the 1960s, arguably the most important happening of my baby boomer generation. I lived on the other side of the country. There were no people of color in my town, except for the custodian in my father’s office whose family lived in a neighboring town. In high school in the late 1960s, Contemporary World Problems was a required class, but all I remember about the course is memorizing ancient history, which I have forgotten. The day has me thinking about the courage it takes to grow old.

My mother, at 96, still bathes by herself, but needs me to put lotion on her back. I wait in her bedroom, watching through a tiny opening in the pocket door to be sure she’s okay, until she gets out of the shower and sits on the toilet seat to dry herself. She agreed to a grab bar on the side of the tub, but beyond that she fiercely defends her ability to do it by herself. I don’t think about the day when she won’t be able to. I wonder if she does.

I rub lotion on her twisted back, ravaged by scoliosis, moving around the curves and over the knobs, my hands like skis on a mogul trail. Her once 5 feet, 4 inches has shrunken as her backbone permanently bends forward and sideward. Her paper-thin skin is stretched tight, as if it can barely hold her brittle skeleton together.

Her skin is well beyond the changing terrain of my own aging skin. I have freckles that never used to be there and white, pigment-free spots; but hers is a canvas of color, with tiny red blood dots—harmless “cherry angiomas,” I read on the internet—and ever-present bruises in shades of purple and green on her hands, wrists, and shins where she knocks into things. We make an annual visit to the dermatologist to have the crusty, pre-cancerous carcinomas—perhaps the result of growing up in the sunny south—frozen into submission. We choose not to treat the one that tests positive. It won’t be what puts her in the earth.

A topographical road map of red and blue veins and arteries rope through her arms and legs, the backs of her hands, the tops of her feet—a journal of the highways on which she has traveled through life for nearly a century. The skin of her face is soft and wrinkled and hangs loosely; her milky blue eyes gaze quietly out beneath the ever-present visor that shades the permanently dilated left eye, the one that still has a gradually fading pinpoint of vision. “You will never be blind,” her glaucoma doctor tells her, rather impatiently. I take him at his word. Mama doesn’t believe it for a minute.

One of her ears—out of proportion, now, to her wizened head—holds a hearing aide, the other has long been silenced. The lustrous strawberry-blonde hair her two-decades-gone husband was smitten by when they were courting is whiter than white and too thin to hide her pink scalp. “Is my coat covered with hairs?” she asks me when we go out. My own hair is following the same trajectory. This will be me one day, I think.

She weighs just 77 pounds, not an ounce of fat, except for a boggy abdomen—stretched from the three daughters she bore—over which she can’t bear to wear anything tight enough to stay up. Her three-sizes-too-big 100% wool pants, that she will wear until July, are usually unzipped. Rebecca has suggested alterations, or custom-made pants. “They charge too much,” Mama says. She tells people her long boney fingers—slightly crooked from mild arthritis—can overlap around her upper arm; two hands can easily wrap her thigh. She seems proud of the fact. She is always cold when it’s so hot in the house I can barely function. I read that dementia causes the brain to forget to tell the large muscles to be warm, it’s not just that she has no fat.

She is losing ground. But her heart keeps beating steadily behind her sagging flattened breasts; her lungs are still doing their job; her invisible muscles keep moving her around the house, and anywhere else there is a helping arm to steady and guide her; and her mind remembers enough of what it needs to. She walks four laps four times a week around the tiny sad mall in our small town. She does deep knee bends holding onto the oven door handle and, in the warm months, walks on the deck and does arm lifts in the fresh air—if it’s not too sunny.

Her body is wearing out, but it’s not finished with its journey yet. And she isn’t about to let it go as long as she has breath.

I marvel at her lack of inhibition in showing this body to me. It is what she has to offer, and she does so without shame or modesty. It is the same body that ran home from grade school, stopping to pick a bouquet of the neighbor’s flowers for her mother, that hiked the trails in the Smoky Mountains, that she joined with my father’s as they conceived me, that rocked me to sleep, and held my own babies and their babies. And now it is frail. She is not suffering from severe dementia: she would not throw off her clothes and walk out the front door and down the street. In fact, she rarely leaves her bedroom in her nightgown and bathrobe. Yet, she offers her nakedness to my touch without a word or a grimace.

There are many causes that call for courage, to do the best one can day after day for a long time. I wonder if old age might be the gutsiest of all. Although the team is large—elderly friends with whom to commiserate until one-by-one they die, family, caregivers, medical professionals—each old person fights their own fight, alone against their body, on the last leg of the journey. There is no happy ending. No hope that if only you do this right you will be cured and go on to the wonderful rest of your life. What the old look forward to is what horror will be next. Will there be a stroke tomorrow? How much longer until the last bit of vision goes dark? Will the Depends become daily wear, rather than an occasional need? Will next week finally be when home becomes a room in an unfamiliar “assisted living” facility in the company of strangers? Which friend, of the few left, will leave this life next?

Does she wonder if she will die while she’s still able to recognize and say goodbye to her family? Maybe that is the happy ending the elderly hope for. And there is nothing they can do or not do to assure it.

Old age is claustrophobic. My mother still lives in her home, she still moves about freely. But her world is shrinking. She is completely dependent on others to get her away from the house, to choose the groceries she wants, to remind her of things she has forgotten. Books are no longer accessible to her except on tape from the Library for the Blind, played on a special player that can be slowed down and easily backed up so she can listen to a phrase or sentence over and over until she understands the words or gives up. Listening is exhausting, and she does so in small amounts. When she turns the player back on, she has forgotten much of what has gone before.

She reads the newspaper with a magnifying glass, very slowly and a bit at a time. She listens to the TV news, but doesn’t understand most of the words. She doesn’t know what is on her dinner plate until she puts the food in her mouth or I tell her. She says she can’t see to write letters, though she continues to do so beautifully to express in perfectly chosen words sympathy to friends who have lost a spouse. She hates being dependent and resists asking for help—or even accepting it when it’s offered—struggling through doing things herself, even though it exhausts her. She is not open to innovations that might make her life better; she wants her familiar, even if it’s no longer working for her.

My mother is lucky. She is healthy and mostly clear-headed. She has the financial means to provide for herself, and children who are able and willing to help her navigate the fast slide down the mountain. And yet her courage to keep going astounds me.

Like all important causes of justice, the country is slow to come around to rights for the elderly, either socially or through legislation. Historically we have not honored our old. We don’t really care what wisdom they might have to impart. We put them in facilities—some pretty good, some abysmal—because we don’t know what else to do. We shun them because to really see them is to see our own future, and we are afraid. Our laws discriminate against them by failing to grasp their needs, failing to understand the reality of their living, failing to comprehend that the right to die with dignity intact is reverent, not criminal, failing to imagine into being a different future for our elders, for ourselves.

I don’t know how much longer I will be living with my mother. Maybe until I learn to respect her and to be her advocate rather than her antagonist.


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