“My civil rights are being invaded.” His words.
His custodian, duty demands I, his wife and caregiver, keep him off society’s scrap heap. Fight on his behalf. Protect. Defend.
I learned how at age six in the land of my birth, India. My loving Ayah disappeared. My mother and half-sister too. No explanation. There one day, gone the next. The British Courts dragged me and my baby brother away and into the care of strangers. Months later my father appeared. With my arms wrapped around my brother, we were shipped to England, and dumped abandoned in a children’s home until I was almost eleven. Walnut hard mantling a vulnerable interior nobody, but nobody saw inside my shell. I made sure of that. I am that tough-nut person once again. Have to be.
“En guard, messieurs,” I prepare for battle, brandish my foil.
I pinched my arm. Proved I was ready to fend the missiles aimed at David, me, our space. When I played Lacrosse at boarding school in Goalie position, just the same. Thwack. In terror of injury, I lobbed back the hail of balls before they ever struck my face and padded body-armor. Now, as David’s advocate, the same. Thwack. Thwack.
For two agonized days after a fall, David allowed no EMT near.
Be prepared caregivers, its our loved ones right to refuse resuscitation and may seize the opportunity to exit earth.
“What if your hip is broken, I find you unconscious, have pneumonia, a heart attack… what shall I tell the EMTs? Make you comfortable and leave, or take you to hospital?” I pressed. No answer.
Pain, the clincher, forced his choice.
“Call 911. I need to go to the ER,” David pleaded. Saved his life as it turned out.
Apart from a fractured vertebrae, tests revealed bi-lateral pulmonary embolisms caused from hours of sitting on our recent Trans Atlantic flight—another task for us caregivers: nag your loved one to pump those legs and stamp those feet every hour you’re in the air.
I could work just as well on my laptop in his hospital room as well as anywhere, I convinced myself. And for the next week hunkered down beside his bed for six, seven hours. Just as well. One morning arriving at ten, I found him defeated, slumped forgotten, unwashed, un-unfed in a grubby, un-made bed. New temporary nurses shrugged when I complained.
“He’s supposed to be dressed and sitting in a chair. Doctor’s orders,” I admonished.
“It’s good to have an advocate,” the on-call neurologist approved when I complained. Yeah. But what if I hadn’t been there? The light was already out in David’s eyes.
There’s a battle yet to come.
David’s discharge looming, three-weeks in-patient rehab was arranged—not to the hospital’s in-house unit as I requested, but to a facility for the desperate.
“David failed to meet the necessary requirements,”
The physio therapist squirmed. Tall and blonde, he forced a smile. “He’ll be transferred to a residential home. Yesterday your husband only walked ten paces, and to qualify he must show improvement every day. That’s the protocol.”
“Protocol be damned…. And do you know why he only took ten steps?” I sneered. “Maintenance taped his door to keep him in his room because the hallway was being waxed. I insist he be re-assessed.” One look at me, and they agreed.
With four hours of therapy daily, I watched him claim back his functions over the next week until…
…one afternoon visit ten days into his stay, David’s eyes swiveled upwards, to the window sill, and from wall to wall, “Look — white cats. See them? There’s another and another. What am I doing here in a cattery?”
I froze, frantic. One back-slip and he’d be expelled from the program.
I dashed home, and with a psyc-nurse friend checked his patient portal. Yesterday’s urine tests: abnormal, abnormal—every one. An infection — oh Praise the Lord. He wasn’t bonkers. I exploded in tears.
“You’re mistaken. His tests were normal,” Dr. White-Coat in charge contradicted. “No sign of infection.”
Wrong. Wrong. Did I have to fight every inch to prove it? “See — it’s written—yesterday.” I jabbed my finger at the date.
White-coat disappeared. Returned with his head hung low having double-checked the lab’s report. I’ll give him that.
“I owe you a big apology.”
Granted a reprieve, David stayed. But what about computer-illiterates, those without computers wrongly diagnosed with no-one to speak for them, those unfortunates carted off to end-of-life homes where they should never be?
So toughen up, sharpen your swords caregivers, it’s up to us to fight.
The 20 days in rehab allowed by Medicare was up.
“We want him admitted into a residential home for four weeks. He is not ready to go home.” Not a question, a pronouncement.
“Further therapy…” they said.
“Further therapy?” I snorted, for I knew therapy in the facility they suggested happened maybe ten minutes a couple of times a week if that. And worse as a “fall risk,” tied down to his bed attached to an alarm forbidden to visit even the toilet un-escorted, he’d lose his strength to walk.
“He’ll turn up his toes and die in there. I’m taking him home. Medicare covers twenty home visits — a nurse, physio, O.T., and speech therapy. He’ll get all the help he needs.”
Buttoning my ears, I hinted at the patient’s right to self discharge. Reluctently Big-Chief-White-Coat agreed I could take him home. “On condition you have round the clock help for him, and the caregiver completes an hour’s safety training with the unit’s Physiotherapist.”
Problem. Excepting me — no caregiver. I wracked my brains, remembered a friend. He’d looked after an elderly man for years till relatives hauled the poor chap off to end his days in residential care. No way would I let that happen to David.
“Can you help me?” I begged my friend. “Pretend you are David’s caregiver.”
A perfect actor, he donned a white coat and trained with the physio. Freed from the ward’s clutches stiffling our giggles, we whisked David up, up, up and away. I slipped a couple of tens into my friend’s pocket at the curbside, hugged, and fled.
Home-alone, now what to do? I stared at the box of shots given me by the hospital. “Twice a day for ten days…nothing to it,” they waved me away.
Miraculous fluke: my GP brother-in-law and sister from Oaklahoma happened by unexpectedly en-route to California. Demonstating how to pinch David’s belly flesh and stab, I winced and plunged the needle.
Having him back home was a gift. David had no need to say it, gladness, relief, happiness sparkled in his eyes. I crawled into bed beside him burrowing beneath the duvet. How lucky we were.
“Night, night darling. Sleep well.” We both did.
I look forward to your comments.
I don’t recall when Parkinsons shape-shifted husband to patient, wife to caregiver. Was it the day he held up his underpants, asked, “What do I do with these…?” The day I re-taught him how to stand from sitting, use the TV remote, or the day I first wiped dignity from his backside and flushed it away?
In the mirror two heads held my gaze. I peered closer. In one face I saw me, his Liz-darling. The other, a crone I didn’t know.
“Can’t hear a word. Speak up,” crone shouts craning to hear his whisper. “Use your voice…aaah, ooo.” Crone models an intonation exercise.
“Hey, David your mouth,” she insists tapping her chin, a reminder to close his.
“Sit up,” I hear her mutter when he keels sideways in his chair.
“Use your fork… Open your eyes…”
The orders familiar, we all know how they go. Momma-dictator ordering not a child, but a grown man, my David whom I vowed to honor and obey, to love for the rest of our lives? I cower beneath the verbiage — the same words with which I tamed my children sixty+ years ago, when… a single mother with a nursing baby and deaf toddler whose frustrated screeches stripped my brain. I owned a piano then, banged Rachmaninoff’s Funeral March from its ivory piano keys, sedated myself with Valium and a glass of red-too-many. Bad times. No dark night I want to visit again.
My piano long gone, art studio devoid of clay, the New Mexican soil too hard to dig, activity-till-exhaustion is what sedates — and our strict one cocktail happy hour, the hour we socialize. Well that’s the idea.
“It’six. What will it be tonight, my love? G’n’T? Tequila?”
The newscaster interrupts, babbles on. No matter, “Cheers.” Our glasses salute.
Next minute his glass tilts, drenches his shirt, pants, the chair.
“Not again. How many times…? I’ve told you, put your glass down on the table between sips…” My yack-yack strikes up again. I flip-down the footrest, drag from my chair, stomp off for a mop, wipe him down, say sorry darling, it’s not you I’m shouting at,
“I JUST WANT ONE MOMENT’S PEACE.”
Sign me up for a school for caregivers. Hey bloggers, how come one doesn’t exist? Are you, like I am in desperate need of tuition on conflict resolution, the delicate balance between gentle helper: versus bully, custodian: wife? Bound, trapped in a body in sh*t working order, reliant on me to lift cup to lips, fork to mouth, punch buttons on the TV remote, bossed and manhandled, how does David stand it? Well, he has to poor bugger, doesn’t he? No choice. That’s on bad days and not every day is bad…
Not BAD/GOOD I correct myself, a DOWN day, an UP day. His changing states at a flip of some invisible switch floors me. Add that how-to lesson to the syllabus, please.
…and when he was up he was up, and when he was down he was down, and when he was neither up nor down, I hum. How will I find him today?
Crises willing, me-with-me-alone-time is a few minutes each morning before breakfast. The second I inhale my incense stick, light a puja candle, tap three rings to reverberate my singing bowl, tranquility settles. My meditation cushion placed just so, I watch dawn strike Santa Fe Baldy’s distant mountain peak. Birds like the chants I play, it seems, for I see them still on the bush outside the window, heads cocked. Twittering. Perhaps, like me, they gather their intention for the day and summon strength enough to follow through.
From a deep space, I feel the spirits of who it is I really am, who David really is, and see our earthly struggles as no more permanent than Hamlet’s at London’s Globe. I ponder the power of words, the tone in which they are uttered. I swear to let my speech pass through three gates before I ever speak. Remind myself, “…gentleness, patience, kindness.”
“David is a perfect soul I have the honor to serve,” I affirm. “… to treat as I would the Dali Lama, the Queen of England, Mohamed Ali or Pope Francis.”
Behind closed eyes, I draw in the beauty of the man I married. The great love we share. I am his. He is mine.
Calm settles for a few hours, a few days, a week or month. Whistled code-talk, singsong-messages, and love-hugs remind of happiness we share as man and wife.
Oh, dear, my finger hesitated over the keypad. SHARED? SHARE? Is happiness now relegated to the past? I am grieving. I am in mourning.
To better get what the hell it is I’m sounding off about, I’ll set the scene from fifteen year’s ago before the Parkinsonian sea engulfed us, before my husband declared himself trapped alive inside a sinking wreck.
I glanced up. Sitting in our living room, the fireplace spluttering pinon sparks, I moved the fireguard against the adobe orifice and settled back. Newsnight, a program my husband loved, glued him to the screen. Words tossed tired leaving the great big world unchanged. Not ours, though. Ours morphed that night, the night I noticed…
My husband David’s cheeks smooth as the TV screen, the corner of his lips devoid of curl, his eyes saucer round, nodding at the key points being argued in the interview, I assumed he was taking it all in.
Charlie Rose leaned forward, bushy eyebrows pulled close and down mantling personal thoughts. A smile disrupted the furrowed lines demarking his cheeks. He pushed his lips forward. It was easy to see Charlie was engaged. But my husband — was he engaged? His expression gave no hint. I picked up a cashew fragment from my lap, cast it with the doctor’s words into the flames. “Swaha,” I sighed. “Here’s to all we have this minute.” The fire-log like our future incinerated leaving only the present.
David looked the same as he did yesterday, the same sweet way he’s looked for the years we’ve been together, the same physically since his ten o’clock doctor’s appointment the previous morning. (Was that only thirty-six hours ago?) David’s face: Charlie Rose on the box. I looked from one to the other. Studied the contrast.
“You have what’s known as a Parkinson’s mask, an early symptom of the disease.”
The doctor’s words un-rumpled a list of symptoms…joint stiffness, tiredness, micrography, tremor, fears we’d scrunched inside. For a couple of months I noticed his voice. Its new sexy huskiness. And teased him. Then not so long ago, speed walking our favorite circuit behind his house, he stopped, waited for me to catch up.
“My left arm won’t swing,” he complained. “I wonder. Could I have I had a mini stroke?”
Next day at the doctor’s office, the doctor clicked his ballpoint pen. On. Off. On. Aligned the missile shape of it parallel between the two top lines of his notepad.
“You have Parkinson’s disease.” The clicking of his ballpoint spiked the silence.
The three syllables “Par-kin-sons” skimmed the surface of reality and sank beyond my conscious thought. The doctor’s words were just sounds, nothing meaningful about them. After all, the sky still shimmered cloudless, and the smudge grazing the horizon too far distant to define. I was too shocked to ask what lay ahead. Stepping from office to sunlight, we held hands, not talking. I closed my eyes felt the warmth of the sun.
Bloody ironic, David a doctor. All those nights slaving in the ER cranking extra dollars to live the poster retirement under a palm tree somewhere. Now just when he was free…
I didn’t burst into tears then. It took a week. Walking one early morning along the arroyo behind our house, I brushed against a cactus. The cruel pain of its barbs gave me reason. Broke my reserve. I wept and wept. If David cried, he cried when I was not about.
Caregivers, did you stiffen your spine like me on hearing your partner’s diagnosis? “Pointless dissolving into a crybaby…pull yourself together, girl,” I admonished myself. “Face what needs facing and bloody well get on with it.”
I didn’t admit to my feelings. I couldn’t. I didn’t recognize the nothing I felt covered emotions I was not strong enough to handle at that time. It’s a British thing. Denial. Our way of coping.
“Let’s take a trip. Go on an exploration.”
So we hiked into the desert silence of White Sands and lay together beneath the Milky Way and swam the waters of Elephant Butte. For two and a half months we toured Sri Lanka, and clocked ourselves into a Kerala nursing home, South India, to undergo a month’s Ayurveda treatment, then took six weeks in a half-built ocean resort recovering. It was a beautiful time, we agreed, riding waves twenty feet high in the Indian Ocean, strolling the Malabar coast hand in hand, eating vegetarian. We never looked or felt so healthy.
The future, not yet existent, nosing into the past kept us warm and down-coated. Nesting, we called our “do-you-remember-when-we…” stories.
But “Par-kin-sons” was there, three stones lying below the surface. Dark lumps on the pristine sand, one, two, three… I could see them through the water. Behavioral and physical changes like his indecipherable writing, more frequent stumbles, fading memory, curving posture, loomed unavoidable.
What David felt, he kept to himself.
I have never written a blog. Don’t quite know what a blog is. The one blog I have read was part of a novel. As far as I can tell blogs are rants. Mental diarrhea spilled on a page for strangers. So, fellow caregivers wearing a hat from hell, do you talk of ending it all? Use the no-no word — death? Ooops. Aren’t I supposed to love my role, the God-given opportunity of service, the privileged chance to score a heaven-entry ticket like the pre-check and global card we flash to airport security.
Admit it people, you are persona non-fff-ing-grata, a feared social pariah now your partner/spouse is disabled. At least I am. And, if I’m honest, I wouldn’t choose us to take up space at a dinner table for six or eight—deadweights with NEEDs who don’t fan witty dinner conversation.
So-called friends shy from you and your spouse at social gatherings. If they do stop to say hello, ask, “How you doing?” they move along without waiting for your reply. “Better make the rounds,” they murmur.
“Everything good?” an acquaintance purred as she passed. Her eyes popped when I slammed back, “No. Hardly.” I knew she knew of my husband’s crumbling beneath the weight of Parkinson’s — my crumbling too. “We’re crawling back from death,” I spat. “The emergency room docs gave him a couple of hours to live.”
I’m tired of making nice-nice everything’s-fine bullshit noises, tired of keeping people comfortable. I want authentic. A kindly ear to receive our story.
You might wonder why I was there…socializing, I mean. You might say I had no business going. I wonder why too. Pretending it was fun to sip a glass of red while burbling inconsequential rubbish about the damn cottontails having eaten the new tomato plants.
“…and despite the fact their leaves are poisonous…” the woman paused, smiling.
So bunnies why didn’t you roll about and die if the plant was deadly, my thoughts growled, and immediately my mind flew back to the husband I’d left at home.
“Be gone no more than half an hour,” lipstick dragged across my lips, I kissed my dozing beloved’s lips and fled. I craved air… a few minutes flight with my wings unfurled.
Does that make me an abuser leaving him unattended? Because I do. Sometimes two. Even three hours. Propped upright into his chair, a spill-proof drink beside him, the TV switched to a favorite channel, the phone he can hear but isn’t able to dial within reach, I dangle the car keys hesitating.
“I’ll be fine,” he encourages. “Go. I’m OK. Go.”
Three hours tops is OK I rationalize. If he fell, though it wouldn’t be jolly lying unable to move that long, it wouldn’t be fatal.
“You are so strong. I don’t know how you do it.” (Perhaps you know how fellow caregivers?)
“Do you think I know either? Think I chose THIS?” Suddenly I am mad, want to yell. I don’t of course. Instead fluster a coy, alligator smile, thinly veil my bite. You see compliments make me feel bad.
He’s so lucky to have you… I flap my hands in feeble denial. You’re an angel… Perhaps as a baby I had angel wings and IF I ever did, they’ve long been shredded…the patience of a saint… Meant so kindly such comments make me squirm.
Breaking point trips evermore frequently. Have I become an unsuitable caregiver. Someone who might …forbid the thought …tantrum ohh no…p-l-e-a-s-e, not again when…spills and crockery shards splash the carpet for the thousandth time, and the harridan escapes my throat before I can swallow. Yes, it’s easy to fall back into being a mothering nag. Therein lies the dilemma.
I am not his mother. Don’t want to be. Never have been. Nor for that matter his sister. Standing behind him, I slide my arms under his. Encircle him. He turns to hug remembering belly touching belly. I nibble the underside of his neck. He blows a raspberry between my breasts.
“In sickness and in health,” we laugh suddenly in love again. “I’m sorry I yelled, my darling. I just can’t function on three hours sleep.”
“It’s hard being a caregiver, isn’t it?” a grey-haired woman in the car park tossed, as guiding her husband’s shuffle towards their car, he dragged on her hand. Wild wisps, lost hope escape the pins holding her hair. Wrinkles rut her cheeks. Her body hollow from giving calls for comfort. When next I saw her months had passed. She walked alone. The playful blouse she wore, flounced skirt, and lipstick pearling her lips proclaimed freedom reclaimed. Would that be me when…?
by the Perfect Servant