Editor’s note: In the months since I last wrote to you at Joyous Paradox, I have begun a novel. Four women meet and bond in a healing garden, a cancer support center modeled after the Virginia Thurston Healing Garden in the town of Harvard, MA. GrubStreet Creative Writing Center has given me a scholarship to the Novel Generator, a nine-month program for writers working on their first draft. In the following excerpt, Clemency Weems, a Boston widow in her mid-sixties, has begun chemotherapy for metastatic breast cancer. In this scene, she is imagining what she will talk about in a support group at the garden. — MAB
First you enter the cave, then the poisons are pumped into your body, and then you go home to await the symptoms, which could be fatigue, nausea, vomiting, chills, fever, diarrhea, itching, weakness, mouth sores, dizziness, tingling and numbness in your feet, or a profoundly convincing sense that you’re better off dead. Or that you’re dying. Or that you’ve abandoned your Life, like abandoning a small child in the middle of a crowded street fair.
You float above the crowd at the fair, watching your Life scan the strangers’ legs and call out for her mom.
“Mommy, where are you?” she screams. She cries, her face pinched tight around her eyes/nose/open-and-astonished mouth.
Someone comforts her, arm around her shoulders, and rubs her back, the flowered cotton dress soaked with sweat between her young shoulder-blades. She buries her face in the Comforter’s broad shoulder.
Then, Kleenex administered, trip to Porta-Potty completed, your Life stands hand in hand with the Comforter at the fried-dough stand. Powdered sugar or maple syrup? Both? Both.
Where is your Life when your body reaches the nadir? More precisely, the nadir is the point at which the chemo drugs have killed their maximum number of white blood cells for this cycle, as well as their maximum number of cancer cells and red blood cells, and swift-dividing cells in your mouth, digestive tract, and hair follicles. Fewer white blood cells mean that your immune system is at its weakest.
For these few days of nadir, you stay home, avoiding crowds, imploring your family and friends not to come if they have colds or other infections.
Do you have to worry that your daughter-in-law Rhonda, who makes no secret of her frequent yeast infections, will use your toilet and leave little yeast organisms behind to attack you from within?
Is your use of disinfectant wipes compulsive yet? Or do you pray before grasping the glass knob on your bathroom door that everyone has washed their hands thoroughly before leaving the facilities? Is your Life in isolation, that young creature in flowered cotton, cared for by masked and gowned attendants?
Finally, the hoped-for recovery. Symptoms recede. One morning you wake from restful sleep. You and your Life, joined in one shaky body. Unutterably weary. Unutterably relieved. Yet the ground is no longer the ground, the stone no longer the stone. You float in the knowledge that true North is no longer true.
– Mary Ann Barton, 9/24/2016
Another Friday morning. Mim showers in Opal’s salmon-pink bathroom. The smell of Cameo brand soap, wet in her hand, reminds her of kissing her mother-in-law’s fragrant cheek.
Already, though Opal has only been gone for a week, Mim craves her sturdy kindness, her laugh billowing out over the dining table like oceans of acceptance. When Opal opens her side door — nobody but the mail carrier uses her front door — she greets you with the heedless energy of a rough-coated dog who has waited all afternoon for your return. A short, wide woman, her hands wet or floured, a drift of her gray hair falling out of its bun, her sensible shoes polished black and sprinkled with flour. She waves you into her kitchen and bends down to open the oven, where baked cinnamon apples burst out of their skins.
How could a woman like this have died? How could she have faded away? Opal, a woman as lavish in her affection as anyone you’ve met. Shrewd, mind you: an eye for a sound bargain. Mim can see where her husband, Opal’s son, got his head for business.
Mim shuts off the water. She steps out of the shower onto Opal’s plush bath mat. She dries her sad self with a striped beach towel, blows her nose, and shimmies into a set of underwear. Black pants, black top; salmon-pink socks, in honor of Opal, the lover of all warm colors: orange, marigold, cerise.
Then, at the breakfast table: “Sweetheart,” Mim says to Arnold, “shouldn’t I bring the Madonna to the funeral home? I want your mother to feel comforted. Those parlors at McMurphy’s are so impersonal.”
Opal had brought the Madonna home from Austria after the war, along with other treasures she’d found in antique shops in Salzburg. Her husband, Arnold’s father, was stationed there with the U.S. Army of Occupation after the German Reich surrendered. In the chaos of war, so many families had sold their treasures. The Madonna and Child, a devotional figure twelve inches high, was probably German, the antique dealer said, perhaps 18th century, polychrome on walnut.
“I’ll find you a box to put her in, Mim,” Arnold says, shoving his chair back from the table. His mother’s cardboard box collection, like other repositories of useful items, is in the basement.
As Mim lifts the Madonna down from the bureau in Opal’s bedroom, she sees that the Virgin Mary could be any young mother. Her watchful gaze; the mild gesture of her baby’s hand reaching out toward the visitor.
Underneath the statue Mim sees a deep gouge in the base that shows charred wood inside. Has the Madonna come through fire, or been treated roughly for an invasion of wood-boring insects? The unpainted surface on the bottom has darkened, over the centuries, to the color of roasted chestnuts. On the Virgin’s neck, where paint has flaked off more recently, the raw wood glows a soft umber.
Who else, Mim wonders, has prayed before this figure of the Virgin and her son? Who else, praying or reminiscing, has wept for kinfolk lost to old age, war, or execution in the street?
“I am not myself a believer,” Mim says now to the Madonna, “but Opal believed. She loved you; she loved your son. Give her peace.”
Spoken out loud in the quiet room, the words bring Mim a sense of relief so vivid as to be almost tangible. It’s as though nothing else matters. Only this moment. Only one woman, breathing and remembering love.
— Mary Ann Barton
We’ve only been sleeping in separate beds since last Thursday, but already I feel as though my body has detached itself from our marriage like an unhitched railway car left stranded on the track, as the rest of the train clatters away to the next station.
“Wait, wait!” I want to say, hoisting my bag out of the rack and stumbling down the corridor as my husband disappears. Our landscapes aren’t the same anymore. His body isn’t the same anymore. Plus, he’s lost pieces of his body. Oh, just little segments of the arteries that supply oxygen to the heart muscle, just the bits they cut out in the surgical procedure familiarly known as “cabbage.” Coronary Artery Bypass Graft, the CABG without the second b and the second a and the e, so something devised by medical researchers, not chefs.
Come to think of it, my family loves cabbage. Stuffed, with homemade tomato sauce, or New England boiled dinner, the cabbage wedge sliding onto the plate next to the beets and potatoes and corned beef, with two kinds of mustard on the table.
“You want yellow or brown, dear?” I always ask Arnold, my spoon poised to dip up a glob of blazing turmeric or briny brown mustard grains.
“Both, Mim,” he always says, “one on each side of the beef. Did you remember the Irish Red Ale?”
But back to my problem with separate beds. Technically, I sleep better alone than I do next to Arnold, what with his snoring that I’ve taught myself, over the years as we’ve grown older, to accept and let float away into the night. If I practice my alternate-nostril-breathing faithfully, I know I’ll sink down into slumber. And It’s not as if we sleep cuddled up; I don’t like anybody touching me while I’m trying to sleep.
No, it’s just that when we live under the same blanket every night, my body has a chance to meld with my husband’s in a way that just doesn’t happen in daylight. Maybe I need the exchange of molecules that happens when his exhaled breath travels in through my nostrils, and my breath wafts over into his.
“Wear consistent with age and use.” That’s how dealers describe antique furniture in catalogs and web sites. Arnold used to look as if he were wearing his years well, despite the weight problem and the intermittently controlled high blood pressure. I should never have taken up baking when I reached my fifties. I’m afraid ten years of my custard cream pie has done us both in.
Editor’s note: Mim and Arnold Davies are characters in a series of stories that I’m writing. — MAB
Guest Post by Vee Cecil
Caring for a loved one with Alzheimer’s disease or a related dementia is stressful for even the strongest, most resilient individuals. When you know what resources are available to lend you a helping hand, caregiving can become more manageable.
Where Alzheimer’s Caregivers Can Turn for Help
If you’re a caregiver looking for help in the United States, check out these valuable resources. Share them with family members, too. Editor’s note: Elsewhere, you can find a host of resources in Britain at the Alzheimer’s and Dementia Caregiver Center and NHS Choices. In Australia, consult Alzheimer’s Australia.
- For immediate help, contact a hotline for Alzheimer’s caregivers. There are several organizations that offer hotline services, including the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the VA Caregiver Support Line for caregivers of United States veterans.
- The Alzheimer’s Disease Education and Referral (ADEAR) Center: From information on diagnosis and treatment to meeting the needs of caregivers, the ADEAR Center is a valuable resource. Find out where you can go for help in your local community.
- The Aging Life Care Association: Formerly the National Association of Professional Geriatric Care Managers, the association is a valuable resource for caregivers interested in getting help from a geriatric care manager. Find an Aging Life Care Expert who can assist with care arrangements, legal documents, suggest services that may help you, and assist in arranging for these services. Editor’s note: Especially helpful in situations where there is family conflict.
- The Eldercare Locator: A service of the US Administration on Aging, the Eldercare Locator is an excellent resource for finding information about community resources, such as adult day care options, home care, respite care, or nursing homes.
- Help with meal prep: Preparing nutritious meals is one of the primary responsibilities of caregivers, but it’s not always easy to prepare three hot, nutritious meals every day while also tending to your other caregiving duties and possibly working outside the home, as well. Meals on Wheels America runs local programs delivering meals directly to seniors’ homes. Find out if Meals on Wheels has a program in your area and whether your loved one meets local eligibility criteria. If not, check to see if your local supermarket has a grocery delivery program or see if Instacart serves your area. Also, know that eldercare facilities sometimes offer home-care options. For example, Carleton-Willard Village in Bedford, MA, offers an At Home membership service that allows seniors to stay in their own homes while ordering meals from the dining room or receiving home help with meal prep, chores, transportation, bathing and other home health care tasks, and more.
- The National Adult Day Services Association: NADSA “advances the national development, recognition and use of adult day services,” which “provide a coordinated program of professional and compassionate supervised services for adults in a safe place outside the home during the day.” Find adult day services centers near you, and learn about recent research that shows how utilizing adult day services helps caregivers.
- Family and Friends: Caregivers of people with Alzheimer’s are sometimes reluctant to ask family and friends for help because they don’t want to burden anyone else. But you should absolutely reach out when you need it. Even having a family member go to the grocery store for you, can be a huge help. When you’re able to share the responsibilities of caring for your loved one, you’ll have more opportunities for rest and rejuvenation, which will help you prevent caregiver burnout.
Why Alzheimer’s Caregivers Need Outside Help
You might be spending every waking moment tending to your loved one’s needs, and worry about them even in your sleep. That is, if you manage to actually get a decent night’s rest. Because you’re all-consumed by ensuring that your loved one is safe and comfortable, your own needs often become neglected in the process. Your social life may have slowly dwindled to the point of non-existence. You may have rescheduled your own healthcare appointments several times because you just can’t find the time for something as seemingly insignificant as an annual health checkup.
More than 15 million Americans provided an estimated 18 billion hours of unpaid care to individuals with Alzheimer’s disease and dementia in 2014. While there are a variety of avenues that Alzheimer’s caregivers can take to seek help, unpaid caregivers deserve and need even greater options to help alleviate the tremendous amount of responsibility they take on. While they wait for additional help, I hope they’ll get some relief from the organizations listed here.
Contributor Vee Cecil is passionate about wellness for people of all ages and in every stage of life. She often studies the topic and shares her findings on her recently-launched blog, MyNewWell.com. She is also a Kentucky-based wellness coach, personal trainer, and bootcamp instructor.
Photo Credit: Top image via Pixabay by Antranias.
Editor’s note: “Angels” is an excerpt from a short story about family caregiving that I’m writing for my book, Rest. I began it this fall in Eson Kim‘s Fiction I class at GrubStreet Creative Writing Center in Boston. In this excerpt, we meet Arnold Davies, who is just waking up from surgery, and his wife Mim. — MAB
On a Friday afternoon just before Christmas, Arnold wakes up from cardiac bypass surgery, gasping, in one of those high-tech hospital cribs with pushbutton-this and bellringing-that.
Eyes fluttering open, he’s on the dim edge of freaking out, which God knows is a perfectly reasonable response to waking up on a ventilator with a massive bandage on his chest, a tube down his nose, an IV in his hand, and a raging thirst. The first thing Arnold tries to do is swallow – a gulp of panic – but he can’t do it because of the ventilator tube in his throat.
Aagh, he thinks. Aagh! His mind generates the kind of dazed roar that precedes distinct thought. He’s in pain and he can’t swallow, can’t call out for help, and can’t even turn his head. There’s a whole lot of beeping going on. In his head he thinks something, perhaps Oh God, or Mim? Mim?
“Mr. Davies, I see you’re awake.” A woman with an angelic cloud of hair has appeared at his bedside. “You’re in cardiac surgery intensive care and you are doing just fine,” the angel says. “Your surgery is over.” Arnold blinks. The angel smiles a practiced smile.
“Mr. Davies, can you squeeze my hand?” asks the angel. “Good. Wiggle your toes? Terrific. Ok now, I want you to follow my finger with your eyes. Follow it back again. Good. Now, are you in pain? Nod if you’re in pain.”
Arnold nods. His left hand quivers and tries to raise itself, but it’s tied down. Tears escape Arnold’s eyes and slide down his cheeks; he’s mortified. His nose drips.
“We’re going to give you something for pain,” the angel announces. There’s an indeterminate flurry of activity. Someone wipes his cheeks and blots the drips coming out of his nose. “You’re on a ventilator,” the angel says, “so you won’t be able to talk. You’re doing just fine.” Seconds later, he feels blessed relief steal past his ribs into the core of his being. He slips back into the deep.
In the ICU, time passes. Techs, nurses, docs, visitors, kitchen staff swirl down the hall past Arnold’s room. From time to time, someone disturbs his sleep.
Then: “Arnold, honey, it’s Mim.” Arnold stares up at her face, feels his wife’s hand stroking his hand. Briefly, her hair touches his neck.
Mim, he thinks. Tears slide out of his lids. Mim, I need a drink, he thinks. Her fingers wipe the tears down over the pale surface of his face. Her hand strokes the hair on his head, slides around to touch his cheek.
“Wounds heal from the inside out,” Dr. Binh said to Mim in the waiting room after surgery. “Absolutely at this moment, and at every moment since I made the first incision, your husband’s brain and tissues have been directing billions of cellular procedures aimed at stopping the bleeding and repairing the damage. These cellular repair procedures are programmed in us by DNA. All we need to do is breathe and wait, or, in Arnold’s case, allow the ventilator to breathe. Just be in the moment.”
In this moment, Arnold weighs the pressure of his body on the bed; Mim’s hand on his; electronic sounds; the wedged feeling in his throat. A slow-moving awareness begins to reduce the roar in his head.
New angel: a man with dark hands and fingers, a Caribbean voice.
“Arnold,” the nurse tells him, “we’re going to remove your ventilator tube and give you a try at breathing on your own.” It feels like somebody’s pulling a hose out of his throat, fast.
“Breathe deeply, Arnold,” the nurse says. “That’s right, breathe in and then breathe out again.” The machines change their pattern of beeps. Arnold breathes. His throat burns when he swallows but it feels so good to be able to swallow, even though the thirst consumes him. Someone feeds him ice chips; a blessing.
Now that the breathing tube is out, Mim has been allowed back into Arnold’s room. She sets her carryall bag on the floor and sighs down into the chair, twitching her thin yellow infection control gown over her clothes. Her hands smell of disinfectant gel.
Dear Arnold, Mim thinks, Do you remember that song on the radio when we met? She remembers their wedding ceremony at her grandmother’s church in Chicago, her triumphant smile as she processed down the aisle towards Arnold on a gust of bridal pride.
“Can I have some water?” Arnold has wakened.
“Let’s sit you up,” says the nurse. “Hold this to your chest.” He hands Arnold a heart-shaped cough pillow and presses buttons. The head of the bed raises a tad. Oh, God! Something clotted surges downward in Arnold’s chest.
“You’re ok, Arnold,” the nurse tells him. “It’s ok, your chest tube will get rid of the fluids. You’re safe.” He turns to Mim: “You can give him ice chips, but just a couple at a time.”
“Of course,” says Mim. She finds herself breathing in unison with Arnold, as if they’re engaged in some joint venture that requires the highest levels of corporeal coordination. Hearts and lungs have never felt more precious, nor angels’ voices nearer.
— Mary Ann Barton
Image credits (from the top): Chanson de la plus haute tour (II) by Airair, 2007, via Wikimedia. * Head of the Virgin in Three-Quarter View Facing Right by Leonardo da Vinci, Italian, 1508-1512, via Metropolitan Museum of Art, Harris Brisbane Dick Fund, 1951 (51.90). * Head of a Negro by Peter Paul Rubens, Flemish, ca. 1620, via Wikimedia. * Woman Embroidering by August Macke, German, 1909, via Wikimedia.