Friday, June 6, 2008

An excerpt from my in-progress memoir about caregiving

[As I talk about earlier in the memoir, my father had a rare lung disease called bronchiectasis for 25 years. I would often go to my parents' house to help them out. After he died, my mom--who had been his caregiver most of their marriage--was diagnosed with Alzheimer's. The memoir is written in first person, but this section is in second person. Another excerpt of the memoir is here.]

You help him out of bed and into the living room where he inhales a series of medications while watching the morning news, the anchor’s voice blaring. He isn’t hard of hearing, but it’s difficult for him to hear the TV over his coughing.

You get the coffee going and make the bed and pull the slant-board from the closet, unfolding it onto the bedroom floor. You set out the portable suction machine and place a cup of water next to it. In the garage, you fill up a small oxygen tank by hooking it onto the big tank, an awkward maneuver that takes two or three tries. You can be in the garage or anywhere in the house and still hear when the TV switches off and he shouts: “I’m ready.”

He might be able to make his way into the bedroom alone, or he might need to hold onto your arm. When you switch on the suction machine, it roars to life. You help him sink down on his back to the slant-board, his head lowered. He labors for every breath as you pound on his chest with thick rubber cups with knobs you hold in your hands. All the while he coughs and coughs, loud as a shout, each cough a muscular worker carrying up the liquid from his lungs. Soon he grabs the plastic wand from the suction machine and places it in his mouth like a milkshake straw; it sucks up the phlegm through a hose into the body of the machine, like the old pneumatic tubes sending messages from one floor of a department store to the next.

There is a whole routine he insists upon, his magic formula for prolonging his life. You might not be able to tell, but in his head he counts the coughs and the strikes against his body, a metronome keeping track. He knows exactly how many times he has released sputum out of the upper lobe of the left lung, then the lower lobe, and so on. He’ll tell you where to hit, softer or harder. If he’s struggling more than usual, you turn up the oxygen.

When one side is finished, he points to the other, too out of breath to speak. When that side is done, you hold out your arm like a grab bar so he can pull himself up off his back. He sits, gasping, and when he’s ready you help him lower onto his side for the pounding. Next comes his back.

While he pauses in between positions to catch his breath, you see yourself poised over him in the reflection of the mirrored closet doors. You haven’t had a chance to brush your hair. Your eyes seem far away. In his white tee-shirt and gray sweatpants, he looks like he’s dressed for a morning run. You told him once he reminded you of an athlete in training. He seemed to like that analogy. Perhaps it was foolish, but you were grateful you could suggest a way to think of his illness as health.

When finished with the various slant-board positions, he drops to his knees on the carpet where he sits, blowing his nose into a tissue you hand him. He lifts his arm and you help him move up to sit on the edge of the bed. You pound a few more hits to his back, right side then left. He hacks with determination, the final coughs, urging the phlegm up, warding away pneumonia. He needs to evade drowning. He is a relentless swimmer.

And then there’s an exaggerated silence. The machine is off, the coughing has ceased, an aftermath of calm. Sometimes the silence is soothing; other times, if he seems more besieged than usual, you fill up that silence with chatter about the weather or something you heard on the morning news. He can’t respond—not enough breath—but you know in lieu of being able to say what he wants, he likes to listen.

You take the suction machine into the bathroom and dismantle it, tossing into the toilet the gelatinous fluids still warm from his body. You think jellyfish, you think embryonic fluid.

Reassembling the machine, you turn its sucking energy back on, the little engine roaring, and drip two drops of dish soap into a plastic cup, filling it with water that flares up the suds. (Years ago, when he was able, he cleaned the machine himself; he firmly stated two drops of dish soap was the perfect amount.) You dip the wand into the soapy water to clean out the hose and machine, followed by a rinse with clean water. To avoid mold, the hose must be pulled off and hung to drip-dry in the shower. Until tomorrow morning it will hang there like a snake from a tree.

In the bedroom, if it’s a good day, he will have pulled some clothes out of the closet. Otherwise, he’s still sitting on the bed and tells you which pair of pants and which shirt he wants to wear. He reminds you to fold up the slant board and the newspaper that goes underneath the water cup to avoid spillage, and to put them in the closet in the space provided. The suction machine must be plugged in to recharge. You bristle at the reminders. You’ve done this so many times. You know the drill.

Later, though, you realize that his reminders aren’t only about control; he asks you if you’ve done his therapy recently. He doesn’t remember that a few months back you stayed with him for two weeks. Lack of oxygen is diminishing his formerly obsidian-sharp memory.

If you’re his daughter, you might rub his back or shoulders for a few minutes, just to hear him sigh and say, “You have strong hands.” It strikes you that his morning routine is the closest he comes to sensuality, to eroticism—touched in the act of being helped. Perhaps that was why he was so upset when his wife, the mother of his three daughters, said she couldn’t be part of his morning routine anymore. Every day for more than twenty years she pounded on his body. Every day she touched him, a forced intimacy. It must be years since they’ve made love. For years it’s been impossible for him to exert himself without coughing and coughing and coughing.

Holding his oxygen cord so he won’t trip, you help him stand. He has to remove the oxygen cannula from his nose for his shirt to come off. He does so casually, as though he could do without four or five liters pumped into him each minute. His shirt off, he fits the cannula back in his nostrils with the familiarity of someone sliding on eyeglasses. His chest is brilliant blue-white, the chest of a man who never ventures outside shirtless. At another time, in another life, he used to plant trees and build decks and clean the leaves from the gutters, his summer skin the color of earth.

You help him pull down his sweatpants and his underwear, pretending it’s normal for a man of his age to be naked before his daughter, or a stranger. The scent of human exertion, of medications, of age radiates from his pores like rising bread dough, like a seaweed-strewn beach on a hot day.

He holds your arm as you walk into the hot bathroom—hot because you turned on the space heater in advance, as he expects, and hot from the steamy water that is already running at perfect temperature. You guide him into the shower and he clutches the grab bar, easing down to the chair.

If it’s a good day, he’ll take the extension shower-head that you offer to him and rinse himself off and soap himself up. If it’s a bad day, you’ll do that work. No matter what kind of day it is, though, you are the one to wash his hair because it exhausts him to raise his arms. You work in the shampoo like a tender but competent hairdresser. He loves his scalp massaged, and he melts into it. You don’t linger there too long, though, for fear he will become aroused. For fear of providing a ruthless reminder of what he has lost.

When he’s rinsed, you help him out of the shower. You are sweating and so hot you’re light-headed; he’s shivering. He eases down to a chair, the seat covered with a towel. You wrap another towel around him and lay another across his lap, thinking about the coziness of being a kid just helped out of the bath by your mom.

Then comes the body drying, hair drying, and the slathering of his red, puffy, peeling feet with anti-fungal cream, and the trial of pulling on those impossible support socks that are intended to prevent a wayward clot from rushing up to his heart. If it’s a bad day, you hold up a hand mirror while he waxes his mustache into curled handles. If it’s a good day, you help him stand and he performs the waxing while leaning over the sink. If it’s a bad day, you roll in the unwieldy wheelchair and push him over the stubborn carpeting, through the narrow doorways, into the kitchen. If it’s a good day, he walks, holding your arm, pausing halfway to catch his breath.

But first you need to transfer him from the big oxygen tank he sleeps with at night to a portable oxygen tank. You make the trade: he hands you the tube from the big tank, and you hand him the other. Usually he reminds you, as you take the tube to hang it in the proper place on the big tank, to make sure to turn off the big tank. He reminds you, even though it’s second nature for you to turn it off at this time every day. If he’s in the wheelchair, he holds the small oxygen tank in his lap. If he’s walking, you carry it on its strap over your shoulder. It might bruise you a little as it bumps your hip when you walk.

Next you make him breakfast. By this time, your back might be sore. Maybe a headache is coming on. The aspirin is in the bathroom closet; maybe you’ll go swallow two or three later. The oatmeal must be cooked so the individual oats can’t be seen; otherwise, it’s undercooked. The orange juice must be poured in a short glass, not a tall one, because with his medication-shaky hands, he knocks over the tall ones. The milk for his coffee must be microwaved for 30 seconds before coffee is poured in. You’re hungry but none of his food looks good. Maybe you’ll make something for yourself later.

He eats loudly and swallows his coffee loudly and turns the pages of the paper loudly and breathes loudly. It’s as though you sit inside his body, entrenched in the world of his lungs struggling to perform their noisy and nearly impossible task.

If it’s a good day for you, you will pour yourself some coffee and cereal, and join him on the other side of the table. You will notice his blue eyes, as blue as the deepest sea. You might suggest a game of cards later, and he will always say yes.

If it’s a bad day for you, you will escape into the living room with a book, sitting in a place where he can still see you. He asks you to hand him his plastic medicine container, the blue one. You stand again, return to the kitchen, and pick it up off the counter next to him. You pour him a glass of water, in a short glass. You will go back to the living room, and he will ask you what you are reading. You will tell him, usually adding that it’s research for a writing project, or in preparation for a class you’re teaching, even if that’s not true. You need an excuse not to be in the kitchen with him, and work is the only excuse he accepts. He has never been comfortable with leisure. Even his vacations seemed like work, an array of activities planned out meticulously in advance. That is why he has lived so long. His illness is his vocation.

Where is his wife this whole time? The woman he’s been married to for almost fifty years? She will have gone on a walk in the neighborhood or perhaps driven to the gym for step-aerobics. (She’s the rare septuagenarian at the gym; the gym-rats tell her they want to be like her one day. They think she’s engaged with life.) When she comes back into the house, she wears on her skin the energy of daytime, of outside. Maybe she’ll be carrying a little white bag holding a donut or bear claw for him, which he’ll eat after the oatmeal and toast and juice and fruit. He can eat more than any sick person you’ve ever seen, and he remains the same weight, sometimes even loses weight. It’s as though his lungs run a marathon every hour.

He will ask her where she’s been, and what her day looks like. She’ll tell him in a syllable or two, the tone of her voice conveying a deep, complex weariness. As she’s leaving the room, he tells her about something he’s read in the paper. She’ll stop and turn. If it’s a good day, she’ll settle in to listen, pour herself a cup of coffee, and sit at the table across from him. She may add a few of her own thoughts about another attempt by their idiot senator to reinvigorate support for the local dam project even though the land lies on an earthquake fault; or about how one of their friends is mentioned in an article or obituary; or about their disdain for a letter to the editor written in support of the war.

If it’s a bad day, she won’t sit at the table. Instead, she’ll make her escape into her cave of an office. After she leaves, his eyes wander back to the newspaper, scanning the headlines until he nods off. Maybe the phone will ring and jolt him awake; one of his daughters is calling, or a friend, or a neighbor to ask him a Homeowner’s Association question.

She spends hours at her computer, emailing friends, editing a freelance article, checking on her book sales, until it’s time to make lunch for her husband, then dinner. If you’re the paid caregiver, you left before lunch and will return tomorrow morning. If you’re a daughter, you stay to spend the night.

On the couch after dinner, you all eat vanilla ice cream with chocolate sauce while watching an old movie on Turner Classics. You know every evening your parents inhabit that black-and-white movie world of women with plush lips and shoulder pads, of men in hats and ties. A world once theirs. A world replaced by new things. While the man with oiled hair pulls a gun from his desk drawer and the woman with deep dark lipstick stands in the shadows, the woman on the couch puts her feet in her husband’s lap. Lightly, he runs his fingers up and down her soles like there’s a secret between them.


Collin Kelley said...

I can't wait to read the whole thing. You write so eloquently of your father.

Kate Evans said...

Thanks, Collin. ox

appalcart said...

I can't wait to read it too.

Daddy suffered from emphysema for years and it was a loooong road. Mama was deceased, I'm an only child, but [husband] Mike was great throughout a extended, difficult time.

I can totally relate to the repetitive reminders of routine tasks that you've done many, many times. Daddy's whole focus, whole universe, became about his health and tasks related to his care, that's all he could think and talk about.

Kate Evans said...

Wow, Joanna, your experience is so familiar--not only to me but Annie too. She took care of her mom for a number of years, and like your dad, her mom died of emphysema. That story is part of my memoir as well.

Jo A. T.B. said...

We lived through this many years with my father in law. He suffered terriby. Your words brang tears to my eyes remembering how he suffered for every breath. He was a good, stong man like your father, I've never been so sad in my life to see my mother and him die within a year of each other.

All the machines and medicine, and the fight to survive another day. I'll have to post mine sometime, just so sad for me to bring it all back! Love your new photo header, I have a similiar one, I took when my husband and I honeymooned in California. Very beautiful there too! :)

Lisa Nanette Allender said...

You make me feel proud to be a member of the human species, Kate. God Bless You for your caregiving, your ability to speak on this-- and to it-- and your words

"...embryonic fluid.."
"a world once theirs.."
"..he runs his fingers up and there's a secret between them."

Kate Evans said...

Jo--Yes, this is such a universal experience. Thank you for connecting. I'm sorry for your losses. It's such a hard time when the generation in front of us dies one after the other...

Wow, Lisa, your comment goes right to my heart. Thank you.

Anonymous said...

Wow Kathleen... beautiful writing. As long as I can remember (I met you when I was 6 so, 32 years) I remember your mom giving your dad his treatments every night. In later years, your dad would come into my work, oxygen tank in tow, and he would always say hello and chat for awhile. He would tell me about how his illness had progressed and I was always extremely sympathetic with his struggle. He would always shrug his shoulders and smile and say, "its okay, Shauna, this too shall pass." Even with his struggles he always had a smile and and some sage advice. I was always amazed by that. Although I'm sad for his absence, I'm happy that he was here to meet all of his grandbabies and that his struggle has passed. Your writing is beautiful and brought back many memories of your dad (including him outside cleaning the gutters!). I can't express to you what an impression he made on me with those words...almost every time we spoke..."this too shall pass." I think its beautiful how all three of you have supported your parents through their later years. Thank you for sharing your experience It reminds us of what is really important and what it really means to love someone.