“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.