The Fifth Season: A Daughter-in-Law’s Memoir of Caregiving
By Lisa Ohlen Harris
Texas Tech University Press, September 2013, 200 pp.
In this second article in our July series on caregiving (read more about the series), Lisa Ohlen Harris shares an excerpted and abridged chapter from her book, The Fifth Season: A Daughter-in-Law’s Memoir of Caregiving. As Lisa and her mother-in-law (Jeanne) navigate the healthcare system in Jeanne’s final months, they realize that an advance directive is not as clear and straightforward as it once seemed.
The first time it happened was in October. And then again—twice—in November. What better season for falling? The leaves lose their grasp and come floating down, brittle as an old woman’s hipbone.
After she fell for the second time I bought her a cobalt blue walker with hand brakes, shiny as a new bicycle, but two days later when we left for a doctor’s appointment, she abandoned the walker inside the front door and reached for me. I took her hand as she lurched down the porch step, lost her balance, then steadied herself against me. My thoughts immediately raced to Don’t fall, please don’t fall. At the doctor’s office I took her hand as we walked into the waiting room and then down the hall to an exam room. I understood, without asking her, why the walker had to remain at home. She was not yet ready to admit she needed an old-lady contraption, shiny blue or not.
“One of my medications must be off,” Jeanne told her doctor. “I just can’t figure out why I keep falling.”
“We’re all getting older,” he said. “Do you think you blacked out? Did you feel dizzy before you fell?”
“Oh, no. Nothing like that. My feet just got tangled up.”
“Well, let’s draw some blood for labs and see if there’s anything. Definitely use a walker. Silver sulfonamide on the leg wounds and moist-heat soaks three times a day to increase blood flow and promote healing.” We filled the prescription for the special ointment on the way home.
I picked up her lab results the following day, and the nurse sat with me in the waiting room for a few minutes, chatting. The report showed Jeanne’s complete blood count and her thyroid hormone levels as normal.
“It’s the steroids,” the nurse said. “They destroy the protective fatty layer under the skin and make it fragile. That’s why it tears so easily and takes forever to heal.”
“But that doesn’t explain the falling, does it?” I asked.
“Oh, it’s just so hard to get old,” she said.
My mother-in-law is 74 and has severe emphysema. Every morning, while I’m pouring milk on cereal and packing lunches and brushing hair to get four kids out the door by 7:15, Jeanne pushes her walker down the hall from her bedroom to the TV room, where she sits in her favorite wingback chair and twists open two tubes of liquid steroids. She squeezes the medications into the bowl of her nebulizer and turns up the volume on the TV so she can hear it over the machine’s hum.
Once the kids are off to school, I pour myself a cup of coffee and join her. Jeanne smiles at me through the fog of vaporized medication. As long as the nebulizer is running, we do not talk. She needs to breathe every bit of the medicine deep into her lungs.
When the nebulizer’s reservoir is empty, Jeanne turns the machine off. I set my coffee aside and kneel down next to her footstool to peel back the bandage on her leg. She winces as I pull up the gauze pad.
The open wound looks mushy, with a layer of yellowy white over the exposed flesh. It reminds me of chicken fat. The nurses use terms like exudate, metabolic waste, slough. Every time I remove the bandage I cringe and taste bile. At the kitchen sink I drag a towel through steaming water and wring it out like a washermaid.
“Oh, that feels good,” Jeanne says as I place the soaking towel directly on the wound. I cover it with a layer of plastic sheeting and lay the heating pad on top. I set the timer for twenty minutes and leave her to the rest of the morning news. Cloud cover today, the weatherman says. Calm early this morning then breezy and cool, with highs in the mid-fifties.
After talking to the nurse the other day, I came home and looked up prednisone, side effects on the Internet. This drug, among the many Jeanne takes, creates a host of problems: cataracts, osteoporosis, thin skin. Prednisone also causes muscle weakness that in turn may lead to falling. The steroid decreases bone density, making the tendency to fall even more alarming. Daily doses puff up her feet and legs with fluid that also pools around her heart and lungs, resulting in even more difficulty breathing. So the doctor prescribes a diuretic, which makes Jeanne lightheaded and likely to fall again. Along with the diuretic he tells her to take potassium, since frequent urination leaches important minerals and may throw her electrolytes out of balance.
There is no way to reverse the prednisone’s damage. We keep adding more treatments and more medications for each side effect, as if it’s an independent ailment. I guess we should have read the tissue-thin scroll of fine print that came with the pills that very first time. But what would we have done, even if we’d read the list? She was so short of breath. Prednisone helped.
Each time we come home from the doctor’s office with a new prescription in hand, Jeanne is hopeful. She feels as though something’s getting fixed, as though a problem has been solved. In a month or two, the new medication will need its own companion med to treat some new symptom. Still, there is no question that these medications have extended her life. Despite signing an advance directive years ago, she has gradually been put on various forms of life support—oxygen, heart medications, plus steroids in powder, liquid, tablet, and aerosol form. Prednisone has made her veins so fine and delicate that nurses can’t draw blood without collapsing a vein. Each failed probe of the needle leaves a dark bruise on her arm.
Time to talk to the doctor about a port, the nurses say. I want to shake them for giving her one more magic procedure, one more hope. But it’s not my body and these are not my decisions. I keep my mouth shut, make more appointments, do more tests, give more medications. She does whatever the doctors say.
The timer goes off and I return to the TV room to lift the wet towel from her leg and apply a fresh dressing. She asks for an English muffin with cream cheese. I bring it to her along with a glass of orange juice.
“I need to eat something before I take my pills,” she says. “You do so much for me, dear. Thank you.”
On a morning show, one of the hosts has traveled someplace warm and wide, with white beaches slipping out to great swaths of blue.
“Guess I’ll go back in my bed,” Jeanne says, handing me her half-finished plate. “Don’t know why I’m so worn out today.”
Just before she clicks off the TV, the programming cuts to the local weather report. Storms possible tomorrow—
Jeanne pushes her walker down the hall toward her bedroom, and the clear tubing trails and tangles behind her. Her oxygen concentrator hums and gasps.
Jeanne gets a mammogram every October. This year when the postcard came in the mail, I encouraged her to let it slide.
“Mom, before we call and schedule the appointment, think about it. You always say how painful it is, how you dread it.”
“But if I have breast cancer—“
“If there’s a spot, you’ll return for more tests. A biopsy would create another wound that won’t heal. And if you do have breast cancer, what are you going to do—surgery? Radiation and chemo?” This is a woman who scratches an itch on her arm and ends up with a wound that doesn’t heal for weeks.
“You’re right, Lisa. Even if I had cancer I wouldn’t want treatment. But at least I’d know.”
“That’s fair, Mom. But think about it, will you?”
Protocol: mammogram every year after forty. That’s what the brochures say. How likely is it that Jeanne would live long enough to die of breast cancer?
We think one step at a time. Ease the breathing. Take the prednisone. When her skin starts breaking down because of poor circulation, we apply ointment and bandages. Blood samples are taken and corpuscles counted. Radiologists interpret x-rays and ct scans. Jeanne spends more and more time in doctor’s offices, in labs, in the hospital, when she could be watching the hibiscus grow and blossom red in the backyard; she could be reading books to her grandchildren.
After two days she threw the postcard away. I wasn’t the one making the decision, but my influence was clear. Jeanne doesn’t question medical advice enough—I question it too much. I hope I’m not wrong to dissuade her from treatment. I’m relieved to let the yearly mammogram go. If nothing else, there is one less possibility of her falling while getting from wheelchair to car and back again.
When the doctor asked if she’d scheduled her mammogram, I felt a rush of shame. Maybe I was wrong. She explained to him why she decided to forgo it. He nodded, wrote in her chart, said nothing at all.
I dump the uneaten bit of English muffin into the disposal, load the dishwasher, and dry my hands. Now that she’s back in bed I can get things done without feeling like I’m neglecting her. I’ve been meaning to prune the backyard flower garden, where the deep pink blossoms on the low-growing autumn sage have become spindly from lack of care. No reason to put off the task any longer.
The pruning shears I left on the porch last summer have become rusty, but when I open-close them, I find they will still cut. I recently learned that I should have been clipping back the hibiscus all season to maximize blossoms. Now the worn-out stalks stretch in all directions, reaching and bending low, unable to support their own weight.
I cut back a big stem nearly my height. The in-law suite’s bay window looks out to this part of the yard. In the drought of summer, while the rest of the yard went to hay, I hand-watered this section so she could enjoy it. I put up a leaky hummingbird feeder and refilled it with sugar water every few days for the one green-throated fellow who hovered and delighted Jeanne—but I didn’t prune anything. I didn’t know that I should. After Jeanne’s cataract surgery in September, she said the colors of the overgrown hibiscus and autumn sage were brilliant.
A light breeze lifts my hair from my shoulders as I cut every hibiscus plant back to the ground. I’ve read that they’ll rise again in spring, but that’s really hard to believe. What if I’ve misunderstood? But it’s too late now to change my mind. I rake all the clippings and toss them into the fenced side yard where we compost.
The autumn sage bushes look scrappy now that their hibiscus backdrop is gone. The sage, too, should have been trimmed through the growing season—should have been kept close to the ground so the internal growth didn’t become woody. I prune one-third—maybe more—from each bush. What’s left is blossomless and lonely against the bare garden that was moments ago a tangle.
I glance toward the bay window. The shades are up, so I can see Jeanne’s sleeping shape in bed. My scalp prickles and my neck feels suddenly cold. It’s not yet winter, but here I am rushing autumn to an end.
For lunch I make sandwiches—grilled cheese with applesauce on the side, her favorite—and we sit together to eat.
“I see you’ve pruned back for winter,” Jeanne says.
“Oh, Mom, it’s so sad to lose the blossoms and say goodbye to the growth.”
My mother-in-law takes a bite of her sandwich while looking out the window, appraising my work.
“Well,” she says. “It is getting toward winter.”
Outside our kitchen window, clouds cushion the sky in variegated grays.