There are a hundred reasons why not to holiday abroad with David freezing and lurching as he does. An unwelcome stowaway, Parkinsons finds a way to show up wherever we travel. Guaranteed.
So he’s not reported INBBRIATED. Unfit to travel, a constant fear of mine I carry, I’ve slipped a yellow medi-alert bracelet around his wrist, and stuffed a card with his name and flight inside his shirt pocket.
I did lose him once. There one minute beside me at the gate, gone the next.
“He’s wearing a navy cap with a large D emblazoned on the front,” I explained wild eyed.
A security guy discovered him wandering, brought him back in the nick of time to board.
“Why do you do that to yourself? Are you nuts?” an acquaintance bugs me in an effort to put me off. It’s not a question.
“What are a few hiccups and couple of hair-raising scrapes compared to the plusses — the pleasure we get from our travels?” I counter. “No telephone to bug me, no set routine, nothing like getting away to lift my spirit and make me human again. Great break for both of us.”
Know it’s true.
I think back to the month in Mexico: David and I lazing in a hammock strung high in the bamboo forest canopy swinging eye level with wild green and red parrots; our pre dawn swims in velvet-black sea as the first rays of daylight skimmed the water’s surface. Least said the better about the inaccessible palapa accommodation we’d rented sight-unseen. Turned out it perched beside a disused Yelapa graveyard in the jungle…and that was just one holiday, one country.
My mind rambled to the Holy Man seated cross-legged beside the Ganges, the sacred ash he manifested for us to ingest. Next moment I saw David and me in Chile soaking in volcanic water piped directly into a sunken pool in our bedroom…then us treading on strewn gladioli blossoms carpeting the steps to a Guatemalan chapel… then there we were floating on a lake one early sunset to watch flocks of Scarlet Ibis flying home to roost in Trinidad and…and…
“Your husband needs your help,” the BA flight steward roused me midway across the Atlantic. “He’s stuck in the lavatory.”
Hobson’s choice in a case of EITHER/OR. Trapped. Poor David. Horribly humiliated, I found him with his pants around his ankles unable to hitch, zip and belt them up as well as being able to stand and open the door. Don’t want that happening again.
Lesson learned: David wears elastic-waisted jogging pants while crisscrossing the skies. Wears an extra layer of protective underwear too.
“What about the actual travel, dealing with airports and such?” nagging friend persists. “Surely that’s too hard?”
“David rides to and from the gates in a wheelchair cutting lines like royalty. The assistant pusher just zips through.” Annoyed I felt so defensive I didn’t bother telling her that we have TSA pre-check, Global Entry and the like. I feel like royalty too. Pre-boarding getting to sit buckled in our seats before the scrum hits the aisle.
“I say if you can sit at home for hours staring at the TV, then why not in a plane? What’s better than sitting tucked up in a reclining chair being attended to in the manner to which we wish, but were not born?” I snap at Miss kill-joy.
I don’t say its easy traveling with David disabled as he is, but neither of us are ready to be stay-at-homes. I’m grateful we can still pick up our bags and head out.
Yes, my care as caregiver, and David’s needs, remain the same…spooning food mouth-ward, counting pills, aiming and lifting limbs to arm and leg openings, moping urine spills etc., the grind of those twenty-four round the clock duties we Caregivers know only too well, will never, can never, change holiday, but using a trick or two we keep on rolling, rolling
I pull out my check-list.
1) Travel insurance: YES — don’t forget this tip to add to your list, if you are planning a trip, Caregivers. I discovered buying coverage at the same time as our tickets guaranteed acceptance–no questions asked. Confessing to pre-existing conditions, not required. But for that clause David might have waited months, a year even waiting to be cleared fit enough to fly home from France that year he was hospitalized for twenty days and so nearly died. Travel policy saved our butts. Paid a medical escort to deliver him to a New Mexico hospital bed.
2) Seat assignment 6a and 6d: good. Up front just behind Business Class. David should be able to walk that far safely on his own. And back out. Though once waiting to deplane, reaching into the overhead for his Carry-on bag, he teetered backwards taking down the line of passengers behind him like so many ninepins.
3) Wheelchair assistance: yup, all arranged. + have a wad of single, fives and tens stashed within easy access in a front pocket for handing out as tips. Often students, those wheelchair pusher guys are fun to talk to.
4) Pills counted and ready for fourteen days in their original pharmacy containers. Done. I used to decant David’s pills into smaller space saving containers. Big MISTAKE. Seeing is believing apparently. Doctors just won’t take my word for it. THEY have to verify which formula of medication, what dosage etc. for themselves.
I’m not one to fuss normally, but this upcoming trip to Puerto Vallarta has me nervous. Maybe I’m just old. Maybe the time has come for the vegetative slippers and fireside slumber. Perhaps I should have listened to the taxi man at Heathrow last summer. Been discouraged by the contracted thinking of that one friend.
“I must give advice Mummy, let Daddy stay at home,” the elderly Indian taxi driver from Delhi at London’s Heathrow shook his head watching me unclip David’s seatbelt, and manhandle him from the cab.
“You’re wrong,” I replied, “It’s kind of you to be so concerned but disabled as he is, my husband still gets pleasure from our travels.”
“Misery-guts,” I cursed.
Projection? The start of our holiday was not a good beginning.
An adverse reaction to one of his medications, travel anxiety, not sure of the trigger, but something turned my normally gentle David paranoid.
Convinced I was trying to deny him his medication, he grabbed the phial of pills determined to take a double dose. Cajoling, fury, even threatening to call 911–nothing persuaded him to relax his grip. It took two hours of what little night was left before I managed to trick him into giving them up. Sleep deprived and emotionally wacked out it was a miracle we made the pre-dawn flight.
David looked blank when I quizzed him next day. Had no inkling what I was talking about. How different our lives. His. Mine. I liken him as a kite flying aloft and free, and me as the controller who yanks the string struggling to keep him earthbound.
Memories of the suicidally, gawd-awful night at the airport hotel, and the bruise ringing my wrist from his fingers, fading, the warm lassitude of being on holiday is finally creeping over me. Sweaters and coats exchanged for shorts and shirts, and with sand between our toes, we flop recovering, massaged by the sound of the waves.
Question is, are two winter weeks at the beach worth the effort, worth the horrors it’s taken to get to Mexico, I ponder. Yes, so far, yes I say–two weeks at the ocean does justify the means. Mind you, this might be it–the very last time I travel with him alone. Sleep deprived, and emotionally floundering, I came this close to packing David back into the car and driving home before we’d even started. Perhaps I should have listened to the taxi man at Heathrow last summer. Been discouraged by the contracted thinking of that one friend.
“I must give advice Mummy, let Daddy stay at home,” the elderly Indian taxi driver from Delhi at London’s Heathrow shook his head watching me unclip David’s seatbelt, and manhandle him from the cab.
“You’re wrong,” I replied, “It’s kind of you to be so concerned but disabled as he is, my husband still gets great pleasure from our travels.”
“Misery-guts,” I cursed.
Here on the beach in Puerto Vallarta, I watch him. See David’s face upturned to the sun; David drinking in the blaze of color as the red orb dips into the sea; David floating on his back lifted by the waves; David plunging into the sea. Our skin tinged toast colored by the breeze off the sea, sitting on the sand together, David, our friend Jennifer from Colorado and me, a margarita in hand nibbling totopos and guacamole, Happy Hour is a happy hour indeed.
Each day a new day, I thank God for the gift of being alive.
Moan, moan, moan. YOU’RE NOT ALONE, friends soothe. It doesn’t help, you know — telling me. I know friends mean well offering pop-in help and I am grateful, truly, but fact is David and I are adrift alone in a sea of day to day survival.
Try a caregiver’s life for twenty-four hours and then tell me. Try coping on three or four hours sleep. “Go to bed earlier.” I imagine you advising. But that’s impossible don’t you see. I can’t till David’s safely tucked up.
“Ready? Ready YET David? Teeth? Clothes off? Slippers? Washed? Please hurry, I’m dropping.”
Familiar isn’t it Caregivers, functioning asleep on our feet?
My sleep cycle now broken by activity, I lie in bed for hours counting….sheep? — forget those wooly bundles jumping gates — tomorrow’s to-dos are what I’m counting. I try stars next, get caught up wandering the universe, and following moving lights across the heavens — could one be a UFO?
One A.M. “Blast,” I swear, “it’s now nearly two.” I’m clock-watching.
Sleep aids? No luck with teas or pills. CBD, high-free cannabis oil? Tomorrow I must sign on and get some. I imagine driving the twisting road to Colorado…snooze deeply. Morning comes two seconds after my eyelids close it seems.
“What time is it?” David asks mid dream before first light, before I’m ready to be a giver of care.
“Too early, David.” I roll away. Remembering he needs me, I roll back to see David standing by my pillow. A pair of scissors dangles in his hand. Chore number one of the day: snip off wet security underwear. Change him into dry ones.
“Too early David,” I growl after I’ve made him comfortable. “Go back to bed.”
Within a second snoring rattles from his room. “Lucky bugger,” I fume. Try reading. Try sips of hot tea. Give up. Get up.
“Terrible night. Just couldn’t fall asleep,” I glower over breakfast. “Watch out I’ll be a crabby bitch all day.”
Complaining won’t change a thing I realize. I’m venting that’s all. And I know my life isn’t ALL toil and grind and we still have heaps of fun. Take today’s swim class peddling our exercise noodles. Legs pumping, arms waving, laughing, being silly, David and I narrowly missing one another — circus performers on unicycles. Take the lecture we attended, the film that held us spellbound, or the birthday party of a friend — the warm snuggle we share if I’ve hopped into his bed. Bed, now there’s a word to make me grateful.
BED. I’m pulled back to the night drive through Mumbai from the airport over a dozen years ago. Rows of crates line the pavement. Four-tiered accommodation for the homeless: on top of the crate, inside the crate, a sheet of cardboard on the sidewalk, then the least desirable and by far the worst — children even — curled on the hard pavement, legs sticking into the traffic. Yes, life could be WORSE. David and I have no idea how much worse… Parkinsons or no, with more blessings than fingers to count them, we are so very lucky. Today David surprised me — got almost dressed without my help. Small achievement, you may judge, but I saw it as a gift.
Our home’s paid for, we have each other, and a mountain view whose white peaks sing the horizon. We have enough money to choose what and when we want to eat, what clothes to wear, and what to do with our time — luxury enough to balance the Parkinsons horribles. If a handful of earth and sky hold no emptiness as Hafiz declares, I have more riches than I can count.
“What’s more,” I scold myself. “I have the freedom of choice,”
Location, job, socio-economic status, life has swung me up, down and turned direction often. Making the switch from speech therapy to sculpture, sculpture to writing came easy. Working in a calm office with music playing, beat pounding heavy bags of clay. Giving up time to devote to David’s care — not so easy. Words, thoughts pile heaped unwritten in my mind. The computer keys stand lifeless, beckon me to sneak away and get tapping. But hey…
After all what’s more important — my beloved husband’s wellbeing or chasing some elusive fame by finishing my book about Spain, or the sequel to POET UNDER A SOLDIER’S HAT (the book I wrote illustrating one hundred years of Colonial rule in India through the personal stories of one family — mine as it happens.) The answer:
David. No question. He, me, us, our karma together — we’re what matters.
Parkinsons, my caregiver role, life’s circumstance — are what has been dished to us this lifetime round.
“Better get used to it baby, this is what’s is,” I counsel myself.
Nice concept. No quite so easy to carry out. I am still struggling deciding what part of me to chop. Forget should. Forget duty. Forget if only…
“This is the life you’ve been given by God. Live it fully.” Reads one of two quotes I keep on my puja. The second reads, “Whatever you do let it come from a place of love.”
I stand back up, my direction clear. Shared joys. Simple pleasures — those I’ll dwell on. Mini hikes, desert drives and bird watching from our living room. Yes, I have to pack and load David’s heavy walker into the car for expeditions. Yes, I have to help him on with his shoes, coat, scarf and hat. Remember pills, drinking water, sunglasses and hiking poles, but oh the exhilaration of getting out freed from our grotty world of daily coffee spills and trampled macaroni beneath his chair, to walk a leaf-strewn mountain path of brilliant yellow. One example.
“Let’s drive to Aspen Meadows,” David suggested last fall.
“How beautiful was that?” we sighed back home.
Life lessons are all about me when I’m tuned to reach for my rose-tinted specs — see things differently. Even surveillance cameras, would you believe?
Picture seven people, age range five to seventy-five. Returning home by car after a glorious week on the Mediterranean. We’d just turned onto the Grenoble autoroute from Voiron when the engine died. Panic — we’ll all be killed. No way could David jump the fence to avoid the frantic shoal of speeding holiday traffic. Pulling on the obligatory green breakdown jackets and setting warning triangles back and front, our son and daughter-in-law flapped orange jackets fearful we’d all be mown down. Before we could phone for help an orange rescue vehicle trundled into view, behind it a tow-truck. A surveillance camera spotting the breakdown automatically dispatched a rescue crew — hoisted us away.
“A welcome intrusion,” I now describe those big brother eyes — those invasive spies I’d so derided.
No special dinner, no dozen red roses, February the fourteenth, David opened his card. “Will you be my Valentine?” the words read.
“Yes,” he said. “Will you be mine?”
“Yes,” I answered.
Up. Up and away… not in a balloon, though that would be fun, but in a chair lift scaling a precipitous mountain in the French Alps. Lake Benit lay hidden in a crater out of reach to David and me. We’d called ahead to find out if the chair lift would take somebody so handicapped. “Mais oui. We stop the lift, help him on, stop it again to help him off…et voila.”
I pictured the frenchness of his shrug. Imagined the incredulous are-you-mad-you-didn’t exclamations of our friends back in litigation-fearing States; the disclaimer forms we’d be forced to sign should the lift operators even agree to allow him on. This happened just two summers back when David’s balance often tipped him to the ground and he could no longer hold his body upright. Legs dangling swinging above the pines, clutching the safety bar across holding us in the chair we made it to the summit, our children and grandchildren encouraging. The only person fussing — me. Oooo. I shiver — the clang and judder of the chairlift bumping along the wire.
The scary ride was worth it — the picnic and view — a dream. Leaving David propped happy in a folding chair among the crocus and blue gentian, we scattered to explore. Shame I didn’t have my camera ready when I returned, captured the scene, David hunkered in his chair encircled by curious cows. It seems David attracts them. Once in Costa Rica returning from his walk, I met David, sheepish, behind him a string of maybe eleven cows plodding in his footsteps along the black sand beach.
Memories such as these are what support me when I sink depressed. Uplift me and remind me, Parkinsons or no, we can and still do have fun.
What I am saying, Caregivers, is don’t hold back. Be bold. Defy the damnable disease. I’m surprised how much David is still keen to do with gentle prodding.
If I have anything to offer, caregivers, I’d say jump at every chance to take a flying leap at all the wild things you’ve dreamed of doing while you can. Ride that air balloon, paraglide the air currents beside the ravens riding tandem… Learn a new language? Why ever not. Walk the treadmill? Don’t listen to fuddy-duddies who insist it’s too dangerous, just make sure somebody is with him. Compete in the Senior Olympics? Hell yes. DO IT.
David and I took up ping-pong just a couple of months ago. Fearless, at first David staggered backwards after every ball and sometimes fell, but now? He’s become a tiger. Zip, zip, his improved balance, hand/eye/mind coordination the ball skims the net.
“I’d like to sign up for the Chi Center’s Qigong Course,” David surprised me last week. So we did. Lasted the full eight hours.
“I’d like to try medical marijuana,” he declared a year ago. Helped a little but not enough to renew his card.
Fly? Why not? “If he can sit in a chair watching TV for hours, then why not in a plane?”
We ordered wheelchair assistance at the airports, found people to rent our house and took off.
Up, Up and away we went…a bamboo palapa in the trees above the beach in Mexico; snakes and rain in Belize; the ruins of Tikal in the Guatemalan jungle; hot springs and volcanoes in Chile; summers in Spain, Italy, Scotland, France…ten days in a rubber dingy riding through the Grand Canyon rapids… We crammed our lives.
“Sri Lanka was the best of all,” David said one day thumbing through an album and laughing at the image of himself wielding a machete attempting to hack open a coconut and remembering how his sarong slipped.
Turning a page, topless, I walk again the black sands on the isolated beach beyond the ginger plants and lemon grasses around our shack. Call songs of love to the waves.
Could fourteen years have passed since Kerala?
“Damn weird place to honeymoon,” my son remarked when I told him we were off to an Ayurveda Nursing Home in India for a month’s treatment.”
Our quarters were a sand-floored hut, our bathroom open to the air with a resident scorpion in the basin, and bed with a coconut-coir filled mattress. We were in heaven. David checked in with a fading voice, and head constantly moving. Twenty-eight days later checked out with a strong voice and head no longer jiggling. Exhausted, oiled, pummeled, clear-skinned and healthy, “It took six weeks on a beach recovering,” we jest.
This winter we’re off to Puerto Vallarta for two weeks. Vacation and dental work combined same as every year for the past seven. Cheaper dentist, the savings make our holiday free — well ALMOST. This year I’m nervous managing David on my own so a good friend will share our space. Boost my confidence. Help me.
“Hey, hurry, hurry, David, look, a double rainbow. Let’s sit on the porch and watch,” I cry shuffling him through the door.
It is too easy for the two of us to slump feet up, stare at nothing, and slide into the ether. You too, I suspect caregivers, if you’re tired as I am.
Parkinson’s disease weighs so heavy sometimes. Squashes me flat. David’s shell sits keeled to one side unresponsive. No cajoling hauled him to the present. Would he EVER return? I pretend he isn’t there. Re-focus on Lilies, a British film I’m half watching. Fight back tears, forgetting we were once a regular couple that met and fell in love at our village rodeo 35 years ago…our courtship of eighteen years.
“Remember when…” I coax myself. Drop my caregiver mantle. Revived by memories. HAPPY ones…his joke as we signed the Marriage License, “I don’t know what the hurry is.”
My husband, my David, my best friend floats into a world beyond my reach, I turn my head and see not the wrecked human he now is but the sensitive, gentle being who first introduced me to a moonrise — the heavy yellow orb releasing slowly from the mesa flooding the Galisteo basin so brightly we can see each rock and juniper tree. I’d noticed no such beauty in suburban England. Barely witnessed a sunset through her grey pall.
It came to me then: proportionally speaking these down years are but a small toll to pay for the thirty years of good. I have enough memories tucked into my brain to see me through.
Change the prescription of your glasses, I once heard an Indian Spiritual Master teach. I bought a pair of rose-tinted glasses. Keep them on my puja, altar, as a reminder to see the world in a different way. After all isn’t there a silver lining in everything? Difficult to think WHAT sometimes. Well…his Parkinsons, my caregiver role has brought us closer, that’s certain. Worked my character over too—most likely for the better. Parkinsons? Yes, the disease has taught me to see the less abled in a kinder light, discover what matters in our lives. Educated us in subjects we’d never heard of before P.D.
Without David I’d be rattling alone in an empty nest wanting him back…
“Give us a year together, God,” I prayed before we got married. “Please don’t let Parkinson’s Disease take him from me just yet.”
Now we’ve had fourteen years.
It’s lonely here outside your world. I trace your profile with my gaze, the familiar silhouette on the pillow beside me for more than thirty years.
One room, two chairs we sit together of an evening in the rumble of television’s tunnel journeying ever closer to a mysterious world beyond our own. I would prefer music, scrabble, conversation. Head back, jaw slack I notice his eyes are tight shut.
“Open your eyes darling,” I encourage. “How can you possibly know what in God’s name is going on? ”
I don’t understand why him watching television through closed eyelids should that bother me, but it does.
“Beam in Scotty,” I joke, desperate to bring David back.
On good days the cracked vessel in which David resides releases the smart adolescent and child psychiatrist, the man he was, the man I married, my lover-husband and best friend, and we swap chit-chit before he sank turtle-like beneath the waves.
Has he even heard me, the stories I tell him, my questions?
“David, David, I’m talking to you.” Words roam, no sign of landing in his mind.
Is David—anybody—there? And if there is, is he who he was, or the he who he is now? The question tumbles many times a day. Each time, my answer shifts. All I know is I am lonely and miss him.
“Be thankful you still have him. You will miss him more when he is gone,” I tell myself, the breath of his human form, the endless chores of tending, the opportunity of purpose. I see myself padding the vacuum of this empty house oppressed by unnatural silence. His chair vacant, I eat alone.
I watch the effort of his emerging the crumpled human slumped voiceless on his dining room chair each breakfast, the snail energy it takes to pop back from inside his shell. By increments his head realigns with his neck. He snap-traps the drool sliding from the left corner of his slackened lips, retracts his left arm, always his left, through the armrest and creeps his blood-swollen fingers on the tablemat searching for his fork. His eyes are still shut, you see. He relies on feel.
No warning, without reason, all of a sudden, the David I married is back.
“Coffee please…,” Breakfast carries on as if he never WENT. “I’d like the marmalade, please. Do we have any plans for today?”
“He’s like a sea turtle,” I describe him to friends, “sinking then surfacing to life.”
Anybody home, I wonder of my David, the times he switches off. It could be minutes, half an hour or more, I find him, a statue frozen in mid-action sitting on his bed or chair, a sock dangling from his hand. Sometimes I catch him standing immobile, his face pushed against the wall. Can he hear or see me? There is no way I can get him to respond. Take today, Tuesday.
Breakfast over, well the eating part of breakfast, David flopped over with his face on the plate. I have given up trying to bully him to sit up. It’s best to leave him till he re-surfaces. When he’s that switched off there is nothing I can do. I cleared the table as best I could. Reaching awkwardly into a low cupboard, I lost my balance sending the butcher’s cart flying and me crashing to the floor. I hurt mostly from shock of landing on my back. Did David stir, raise his head? Not a muscle.
What if I really hurt myself, fell unconscious, I worry. How long would the two of us be alone inside our walls? This morning’s minor mishap is a wake-up call, one I’ve not yet thought through.
“Ah, he refuses to wear one of those press-button gizmos round his neck,” I second-guess the unspoken solution you’re offering me.
“If not him, then YOU wear one,” a voice whispers.
It’s a consideration I don’t much like the thought of, but I get the point.
I shudder when I recall Christmas two years ago. Speed-walking to catch the propane truck, I tripped and did a Stephen Hawkin flat face smack into the paving stones. Wham. Blood. Twisted limbs. Agony. Knocked momentarily to another world, my screams blended with the truck’s roar and gas hiss, and I lay there unheard. When the delivery men finally heard my “Help. Help” and carried me inside, David never raised his head.
I push that example away…too painful to face. Could I bleed and DIE, the house go up in flames and still he wouldn’t notice?
That puts me in mind of our holiday in Mexico three year’s ago. David stretched out on the sofa inside, me on the balcony tapping away engrossed in what I was writing. Seeking the perfect word I raised my head. Black clouds of smoke billowed from the French doors obscuring the room beyond.
Inside three-foot flames licked the extraction hood above the stove eight feet from David.
“David. David. Get out the room’s on fire.” And rushing in I yelled, “Get up. Get help. Quickly. Quickly.”
Struggling from the couch he made for the door, while I slammed a saucepan lid over part of the blaze—my bag of teas, spices, punched the phone to summon help.
“Reception. How may I help you?” The hotel operator drawled. “Now? Would you like someone to come up?”
“Yes. Yes. Immediately.” Was the woman nuts? Nobody appeared.
Then the greatest luck, two cleaners and a maintenance man happening by, rushed in and took control. Within half an hour the flames were doused, the smoke stains scrubbed and cinders thrown away along with the blackened toaster, extractor hood and frying pan. Oh the shame. It was me. My fault. I had switched on the burner beneath a bagged stash of precious teas, spices and special treats brought from home.
tomorrow when I lie alone
when I have no shirts of his to wash
when I clear one plate from the table
when the back porch swings empty
I will wish…
I will weep
stare into the laundry basket
seek his pair of shorts to add
search in vain for his missing sock
I’ll not complain
today I swear
promise only kindness
grumbling no more at
his snoring snuffling sleep
happy to still have him
“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