21. CAN THIS BE HAPPENING?

Whether it was tiredness traveling back from Mexico that affected David, or just a Parkinson’s muddle-brain, that caused him to double dose his pills yesterday, who knows, but double dose he did.

“Why David, why?” I yelled, aghast. “You never take two lots of pills at the same time. You know that.”

But it was too late. He had. Gone and gobbled up his afternoon and evening pills in one swift swoop. Now I understood why he was GONE keeled lopsided in his chair, eyes closed. Thankfully what he’d swallowed wasn’t dangerous. Meant he’d stay semi comatose the rest of the afternoon and evening. Maddening.

As one small way of David having charge over his own life, I’ve left pill-taking up to him. until now that is. I keep tabs of course, counting out and separating each dose into bright colored plastic lids saved from mayonnaise, peanut and other jars. Made it EASY, or so I thought.

Wrong. Hate demeaning him this way, but from now on I’m taking over. Sideways watch him pop each pill. Hide the containers even. I cannot risk him doubling his seizure medication again.

“And just when he was doing so well,” I muttered more disappointed than worried. “And now this, damn it. Hours of him being a complete goner.”

Incapable as a drunk, at bedtime I had to help David stand, get to his room and undress, and lift his legs up onto the bed. Felt ill hooking out the partials from his mouth.

“Oh well,” was my thinking, “he’ll be fine in the morning after sleeping them off.”

Not so lucky.

One am: I heard him moving. Found him fully dressed, shoes on, wallet and keys in his pocket, flashlight in hand.

“Going somewhere? It’s the middle of the night, darling. Get undressed and back to Bed.”

“The man, the Leader…” David fumbled for a name, “…said to throw things in a bag and get the hell out.”

It took ten, fifteen minutes smooth talking to get him to compromise and let me remove his shoes. Not his clothes though. Those he refused to let me touch.

“I am tired,” I said, “Need to sit down…thirsty, need water.”

“Here,” he said calming down and handing me a glass, then agreeing to lie down beside me. Fully dressed he fell asleep gripping the flashlight tight to his chest.

“Sleep well? He asked next morning remembering nothing of the incident.

Nor did he recall interacting — more accurately, NOT interacting with the Immigration Officer.

At Dallas airport on our return journey, the Immigration officer alarmed by the grimaces playing on David’s face, his lopsided, immobile slouch in the wheelchair, the man kept pushing me. He wanted different answers. Clearly I was covering up the real reason.

“What’s the matter with him. Is he in pain? Why is he making such a face? Why are his eyes shut? Why isn’t he sitting upright? Why isn’t he speaking?”

“No. He’s not in pain,” I answered. “My husband’s just tired from travel. He has Parkinson’s and cannot control his facial expressions. It’s a symptom called Parkinson’s mask.”

For one scary moment I feared he would deny David entry. I smiled attempting to calm him. Must have worked. But note the RED FLAG people. Carry a Doctor’s note certifying SAFE TO TRAVEL. I know I will next time we fly.

It was thanks in part to our friend Miss Sleeps-a-lot sharing space with us down in Mexico that the miracle began.

“I hope you don’t mind me saying, but I’ve noticed a pattern,” she ventured. “David conks out within half an hour of taking his pills.”

Actually the pill — switch-off connection was something I had wondered about before but not fully taken in — the same phenomenon our son and daughter-in-law had remarked on over a year ago during a visit. I suppose I needed to hear the same thing more than once for it to sink in.

“If you hear it twice — listen,” goes a friend’s dictum.

Nothing drastic, nothing dangerous, next day David put off taking his morning dose till his tremors started up and bothered him. After all, I reasoned, David is still a doctor, even if the last time he’d worked was twenty plus years ago. He is qualified to make an informed choice. He knows his facial dyskinesia could increase. Joint stiffness, tremor and other symptoms too. Trade-off is something only David can decide. Anyway, no way to know without trying.

Naturally I’m not talking monkeying about with life and death medications, those essential ones that must be taken religiously as prescribed. No. No. No. I’m talking of lessening the frequency and dosage of those tremor-controlling pills that were possibly knocking David flat.

I recorded the time: One o’clock, three hours later than prescribed.

True to pattern, half-an hour later he slumped sideways eyes shut. It took an hour before he was up and about and open-eyed enough to walk with us to the beach, swim beside us in the sea. Anyone remember the film AWAKENING? Well his “return” was something like that.

Set me wondering: Had too many pills inadvertently been knocking him out? I cringed thinking of the wasted hours. Wept for the time lost. He. I. We. Intricately bound, be it pain or joy, what one feels so does the other.

I began a medication:reaction journal that very morning noting milligram dosage, per diam-frequency, timing, and onset of any reaction.

Alert/comatose. Eyes-open/closed…Something concrete to show the specialist at his follow-up appointment next month.

Alert. Alert. I scrawled. My mind ran circles. CAN THIS BE HAPPENING? David’s bouts of NORMAL in refutably increased? Wow — a positive effect of taking the new seizure medication? Could it be because we’d reduced his Parkinson’s Dopamine medication? No matter the cause, for the moment we seized on the miracle was happening. David-husband and best friend stared around with eyes so wide I could even see the color of them again.

“Hello there, my blue-eyed husband,” I smiled. “Welcome back.”

So it seems giving input to the specialists re Pill management is yet another way of being PRO-ACTIVE. After all it is I, his caregiver who is his day in day out EYES and EARS. I, and all us Caregivers, should at least be free to make minor medication changes don’t you’d think?

Take warning though. Should anything go wrong, it’s we who’ll be blamed if things turned really bad. Accused of neglect even.

Watch out for State Guardianship. The powers officials can invoke with a stroke of the pen. I heard a scary story last week. A friend of a friend of a friend told of the one she loved, her partner of fifteen years, being snatched from her care — his bank account as well. Terrifying scenario. One wrong word, one false report from one disgruntled relative and this could be David’s and my fate. I picked up the phone, okayed the changes with his neurologist.

I played the whispering game passing on the anecdote to the woman sitting next to me at our Parkinson’s Action group. She’d complained of her husband’s pill-zonked out connection. Same as David’s. She was already juggling dosages. Timings.

“I’m just not giving him all the pills the doctors told me I should any more. All they do is make him sleep. He can’t even speak.” She complained. “I’m sure what he’s taking is too much.”

Was I stupid for not having the insight to experiment years ago? I suppose I took the importance of following the specialist’s instructions literally. A lame excuse? Maybe. Never mind the past. We’re on it now. AND the difference is amazing.

We had a real to and fro conversation yesterday. He carried the salad bowl outside for lunch outside, scanned the local paper and announced,

“I’d like to hear this Mahler concert, would you like to go?”

I was so startled, excited by his volunteering something without prompting, I bought tickets on the spot.

Hope. Ah, there’s a teaser. I’m beginning to believe David can partly re-incarnate as he was before Parkinson’s. Is it so foolish to want back the man I married? Chase after hope.

“Maybe with drug management…?”

Every little glimpse of David as he used to be warms me. A few days ago days he talked so much, a friend stayed visiting for an extra thirty minutes for the shear pleasure of listening. Today David put on his shoes and socks. Carried out the trash and helped unloaded the dishwasher.

This afternoon when he retreated unresponsive for two hours, I was forced to face reality. His amazing comeback cannot, and never will be for all the time and forever. Nor his dementia, physical limitations ever vanish. But each second he open his eyes, each second of lucid conversation is a second I can cherish.

Hope is back. Can this be happening I ask? Know it is. Yes, I see small miracles are happening.

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Next week’s blog: TOOTH FAIRY

Previous blogs: Previous blogs:

1.Wearing a Hat from Hell * 2.Back Story before the Tidal Wave. * 3.There’s a Mouse in the Room. * 4.Shape-shifting — Husband to Patient:Wife to Caregiver. * 5.Think your Home is your Castle? Think again. * 6.Vision Quest beyond the Box. * 7.Cats in the Belfry. * 8.“En Guard Messieurs”…Dare me: cross this Line. * 9.Like it or No — Prepare to Play God. * 10.’Tis the Season to be Jolly — not for me it isn’t. * 11.Hello. Hello? Anyone Home? * 12.The Blue Hole — 90 miles ahead. * 13.Disabled — Daft — Demented? * 14.Up. Up and Away…* 15.Humble Pie. * 16.What do I have to Complain About. * 17. Come Back Tooth Fairy. * 18. Promises Promises. *19. Fly Fly Away. * 20. Refresh. Reboot. *