Category Archives: care giving

Clean

The game we play, my father-in-law and I, has no written rules, no tiny hour glasses filled with sand,  buzzers, or points to be counted.   Well,  that’s not exactly true, there is a type of score. 

This time the score is 7 days, 4 hours and 27 minutes.

That’s 7 days, 4 hours and approximately 27 minutes since Griffy’s last shower.

The first move is always his.

“Sharon, I think I’ll go for a shower.”  …although he has started calling me Karen…

“Ok Griffy,” my reply.

Let the game begin.

The announcement comes mid-afternoon,  never in the morning, never at night. He declares his intent, shuffles off down the hall, slippers buffing, scuffing all the way. One does not need to watch, you can hear his progress, down the hall fainter and fainter until he reaches his room, opens the door and goes inside.

The shower isn’t in there.

There is nothing he needs to retrieve; supplies and towels are ever ready in the master bath. Do not ask me what he is doing, there are  some things I just don’t care to know.   A few minutes later, the door opens, he comes out empty-handed, and heads for the master bath.

The next move is mine.

I sit and count to 100, not too slow, not too fast, 1 -1000, 2-1000,  3-1000; like a game of hide and go seek only now there is no seeking,  just me hiding out of sight.  

I take my cell phone and into the master bedroom I go, taking my place just outside the bathroom door and wait.

Well,  not just wait exactly. I listen.

I listen for the sound of the water being turned on, and when it starts, I look down at my cell phone  and start the stopwatch.

It started out just listening, listening for trouble. The plastic shower seat, hand rails, and hand-held shower were there to assist, make it easier, but  the mommie mind  raced, never at ease waiting on the other side of the house for his return. He can barely keep upright walking on a solid dry surface, never mind on a wet soapy one. So instead of waiting out of ear shot heart racing thinking every noise is a sign of distress, heart pounding call the paramedics!  I started sitting in the bedroom listening for trouble just outside the bath room door. 

The proximity eased my worry.

I don’t know why that is, why being closer  seems to alleviate the fear. It just does. It’s the same with  all my children, as long as they are near, as long as they are close,  as long as they are under my roof, in my house, they can come to no harm.

The simple nearness is a strange comfort, but it works.  So I sit, just outside the bathroom door assuring that no harm will befall the tottering 75 year-old man just  beyond the door, nothing can happen, because I am near.

That’s when I first noticed it. I noticed that despite the fact that the water takes a while to warm up to even body temperature, it never seemed to run for very long.  

So I started timing it. The water did shut off almost as soon as it was turned on.

How soon?  

Less than two minutes. As in you have got to be kidding  there is no way  you are soaping up and rinsing off  anything in that amount of time, soon.

That’s how the game began.

It started off with me just listening, making sure he didn’t fall in the shower, and evolved into me playing  some sort of hygiene monitor.  I now arrange the soap, shampoo and even his tooth-brush and when I check them after his almost weekly attempts at personal hygiene they have not been moved.

His tooth-brush is never wet.

That’s the game we play, Griffy and I. 

He pretends that he washed.

And I pretend not to notice he was in the shower for less than 120 seconds.

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Filed under care giving, Caregiver, Griff, Life, Multiple System Atrophy, Shy Drager Syndrome, Story Telling, True Life, Writing

Tell Tale Heart

The Cardiologist carefully  lifted and replaced the stethoscope onto each quadrant, front and back, before listening again to the front with eyes squeezed shut. The “lets give it a listen” full eye contact, and  comforting smile disappear instantly.

The words pulse silently in my head, heart murmur, heart murmur,  heart murmur a terrible triplet.  A new symptom to add to the list.  I watch the professional eyes open and then avoid; they never do meet my gaze again.

Fucking whimp.

I want to scream at him.  Go ahead asshole tell me. What you hear I see.

It is Poe printed in black bold on thick white cotton bond, this heart tells tales; See him sitting all day long, not moving, watching TV, waiting, see him dizzy, grabbing hold, holding on, see him on the floor, see his lips mumble his not quite conscious first words,

“I don’t want to live like this.”

Cardiologist looks down and away, at his chart, at the wall, says, “his EKG is abnormal,”  holds it up,  the paper with the squiggly lines held aloft.

…do I look like I can read electronic scrawl?

I silently dare him to look at me, he doesn’t.

Bad girl takes over, refuses to look away; see  high-waisted  khaki pants,  a slight tuck to the left, buttons all done up tight, scrub faced  always wears a white undershirt, tightie whities, faithful deck shoes awaiting a deck, a walking ad for  L.L. Bean.  Safe money says this is an only gets blow jobs on birthdays kinda guy.

Bad girl wants to swear just to see him jump. Big juicy swear words roll around and almost slip out.

He starts asking questions.

“Ever had swelling of your legs?”

“Oh years ago in Rome… I was” Griffy starts,  only stopping to inhale as the story is lengthy an requires frequent oxygen intake to complete. I know the end of the story, but the cardio-boy will never hear it he has moved on to question two.

“Do you have shortness of breath?”

“Oh yes… why just today I was out of breath only walking to the chair and”

“Do you tire easily?”

So close …almost got that second answer fully out before the third was asked. Close  but no cigar.

“Well I think you’ll need some further testing to exclude cardiac reasons for your fainting.”

“I’m sorry, ” I stammer. ” Isn’t Multiple System Atrophy and the related autonomic mal-functions that cause both high and low blood pressure the cause of Griff’s fainting?”

It is as though I wasn’t in the room. He looks right at Griff and says,

“A 70 % blockage would be enough to cause your symptoms, I recommend further tests.”

Cardiologist man then stands,  opens the door, looks down the hall, and says, “you know how to get out of here? They’ll set you up at checkout with the appointments.”

Dr. Oz he isn’t.

“You do know he has MSA a degenerative neurological disorder than is chronic, progressive and fatal?” I add as I get up and start to wheel Griff out.

There was no answer to the query.

First impression note for the field guide he is a silver-haired Tempe Arizona frat boy who thinks waitresses belong beneath him and always put out.

Honey, you are quickly becoming a walking cliché’ … Remember No one can make you feel inferior without your consent.

Thanks Eleanor, but really this place would piss off Gandhi.

“See the blue light? its right, then another right,  down the hall to the blue light, then straight on til you see checkout  Take care.” as he disappeared in the opposite direction.

Strike One.

“Blue light?” I hiss. What the fuck is this a super fucking K-mart? Blue light special on aisle three. Blue Light?” I steam out, pushing Griff at a safe but speedy pace, his hair only gets a little bit tossed, we come to a stop at check out.

There isn’t room for the wheelchair in the checkout cubicle, its three by three, three sides, padded, convenient, with a high counter, and two over stuffed chairs in a blue that screams I’m supposed to make you feel comfortable and right at home !

News flash. Your chairs just piss me off.

Strike two.

I wonder if this place has ever heard of access for disabled persons.

Strike three.

All this is before she speaks.

“The doctor wants him to have a chemical stress test as soon as possible.”

“Excuse me? I thought we were referred for an echo cardiogram?”

She makes a fatal mistake by repeating her exact words in exactly the same manner only a hundred decibels louder.

The exchange continues.

“A stress test for a man who is unable to walk the 20 feet down the hall to the bathroom without passing out?” I ask.

“Can he get out of that chair?”

“Yes”

“Well then he won’t have a problem, can he lie down, lie still? ”

“Yes and yes”

“And did you come here for Dr….. ” here she pauses to look at the computer screen as there are no less than 12 attending cardiologist that frequent this lovely Cardiac Care Center. “yes,  Dr. M, so you came for DOCTOR M’s advice correct? DOCTOR M-wants him to have a chemical stress test, then an echo.”

Griffy sits head a little tilted, face drawn. I have talked over him literally, and lost my cool, again.

He didn’t need this from me.

I take out the green book, my Dedicated Griffy Information Depository and open to write down the appointments.

It slips on the way out,

Mother Fuckers!

Griffy laughs, at least we have this.

If nothing else, I can still make him laugh.

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Assembly Required

At the rehearsal dinner Griffith Lloyd stood and put spoon to a water-glass.

Griff then raised his glass and said, “I have a word of advice for the bride”.

The loud laughter quieted those gathered at the table looked up at the man standing at the head of the table,  and fell silent waiting for him to begin to speak.

“I have a word of advice for the Bride”,   he began again, “it was advice I was given myself many years ago upon the occasion of my marriage,”  He looks toward Hilda, his wife. 

Hilda doesn’t smile, a quiet woman, not prone to toasts or jokes, she is serious and she would have made a perfect poker player  if she approved of poker that is.

“Here we are all gathered to celebrate the upcoming event,  the night before my son marries,” he clears his throat.

All within ear shot have stopped what they are doing at the down town Chicago pub, waitresses pause, bartenders stop tending, other diners and drinkers watch waiting. It’s the accent I think,  a standing man with glass raised is a spectacle, but a standing working class man from Liverpool with a rather Beetles like accent tends to draw a crowd. He likes this, and with chest puffed, starts again, even louder this time.

“So this being the night before my son marries, I would like to give a piece of advice to the bride”

“There is something you must do,” he says looking right at me.

“I want you to get a jar,  a big jar, the bigger the better, something like a pickle jar.”

The entire pub is on the edge of their seats, thinking that a worldly  man of wisdom is speaking, and something learned will no doubt follow. I think a few people even put pen to paper.

” SO you have a jar, a big jar,”  He can’t fully  gesture as his Guinness would spill. 

 ” what you do next is very important, are you listening?”

I nod.

“I want you to put a penny in the jar every time you have sex for the first year of your marriage. One penny now, no more. But a single penny goes in the jar every time until your first anniversary.”

“And then after the first anniversary, every time you have sex, I want you to take a penny out….YOU’LL NEVER EMPTY THE JAR!” 

The pub exploded with loud back slapping beer spilling  laughter. 

Laughter and Griffith Lloyd reined that night.

Although I never officially had a jar, or placed pennies in it,  he was absolutely right.

There are no toasts anymore, and Hilda left us first.

He sits now, almost always sits. His breakfast, lunch and dinner are carried to the couch.

Through it all he remains seated, but always says, “Oh this looks tasty!”

He rises only when he has too, bathroom breaks, and when he shuffles off to bed.

The couch back and seat remain in his shape, a placeholder, empty until morning when his physical form fills the space and we begin again.

He is melting before my eyes, each smaller pair of pants eventually begin to gather and sag his limbs lost in the folds of fabric. 

His  undies, are the same. I have not seen undies this small since my son,  long now grown,  was in grade school.

It’s the Multiple System Atrophy, arguably part of Parkinson’s, arguably not.

I really don’t give a shit what you call it. I see what ever you call this,  in action. He is smaller and smaller each and every day, with less movement, shuffling steps, curved hunched over shoulders, and such dizziness upon standing and movement that he passes out.

Autonomic Dysfunction. Things that are supposed to work, breathing bladder, bowels, walking and blood pressure just don’t work anymore.

Friday night he stood in the kitchen drinking a glass of water, and his eyes rolled back into his head, and passed out. He was caught, and the glass taken away, and placed upon the floor, choking.

Yes, one can not swallow in the middle of being passed out.

 He regained consciousness and always embarrassed, never seeks an audience now, always says,  “I’m ok… I’m ok..”  he says.

But He isn’t, and he wont ever be again.

A while ago I noticed his small form  is no longer comfortable on the big downy couch, he folds pillows sticks them behind him, under legs and across his neck.

The box came before Fathers Day. Huge sitting on the front stoop, he sees it and says, “There is a box here for you  Mrs.”

“No…that box is for you.”

“Me!”

I open the double doors, slide the box inside, a picture is on the side, a chair is inside, a leather recliner in a european style that spins on a cherry wood base and has a separate foot rest,  all in wonderful toasted brown butter soft leather.

Assembly required.

“Its your Fathers day.”

I know he wants to put it together, I also know he really doesn’t have the energy anymore, nor the eye sight, or strength.

“Why don’t we wait for Gary?” I suggest.

“No, this is easy I’ve done this kinda chair before,” he replies.

Shit. I worry about his frustration, like giving a child a toy way beyond their ability, but he is not a child, he is a man I remind myself.

I know then my days plans have just been put on the back burner, he will not wait for Gary.

6 hours later the chair is together, we had to stop for breaks, lunch and snacks, and I tried to read the instructions in my best  non bitchy manner, but after the first three hours I took the instructions out of the clear wrapper and read them aloud to him.

“Oh I get it now!” he said.

It was done before Gary came home, and he was happily sitting and spinning, in the soft leather chair that fit him like a glove.

No longer does he need the pillows placed, no longer does he have the hanger pain across his shoulders from muscles worn out holding up his head, no longer, for now.

Like Captain Kirk, he sits front and center, his remote and tools at his right, newspaper crossword, eye glasses; spinning and traveling in his chair that fits like a glove.

For how much longer I can not say.

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