Category Archives: Shy Drager Syndrome

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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Just Be Present

He sits shotgun,  all quiet,  even through the massive highway construction towering high above us and stretching as far as the eye can see.  He says nothing about the huge earth movers scrapping and scouring and shifting the soil to conform the landscape to their man-made plans.  He ignores the trucks and hard hats and “mens’ work”.

Something is seriously wrong with this picture. 

For a man whose life was filled with outside work, climbing poles, driving huge drilling trucks, his silence is suspicious. 

I know this silence.

It is the sound of children sitting in the back seat in a panic going to the pediatricians office pondering the unknowns; specifically, shots or no shots.  As a young mom I never told my children they were going to the Dr.’s until the last second. Too early and one was driven nuts with questions, worried glances, and tears.  

What they didn’t know then was not telling them really had nothing to do with their whining and fear, it had to do with my own.

Ask any parent they’ll tell you, it is always harder on us, we who watch.

There is something slightly sadistic about taking a babbling little six month old to get their shots. We wash them, and dress them up, brush their fuzzy heads, all to take them into a room and allow a stranger to jab a needle in their fat leg, usually not just once either.

But you have to do it. There are things we don’t like, things we don’t want to do but gotta, and this is one of them.

Then nurse comes in with the tray.

The little plastic or metal tray that hold the syringes, needles other wise known as the business end of this office visits. 

Then just as the parent reaches an all time high of  jumbled frayed nerves, stomach is doing somersaults, the unforgivable is asked of them. 

“You ready?” This is when they usually lay out their plan of attack on your unknowing, unsuspecting childs little  limb.

Then it comes.

“Could you hold their leg still?”

This is where the sadism enters the picture…we have to hold them down.

I told you it’s always worse for the watchers.

So I know the silence, been there, done that.

This time it is my father-in-law, Griff is on his way to a new Dr. appointment, and that old silence is back, the kind that hangs in the air, a foggy fear,  still with apprehension, and just like with my children, I feel it swell in me too. 

“So what do you think about all this mess?” I try to engage him with his usual favorite topic.

“.. lots going on.”  Not biting.

I ponder my choices, I need to do something to reassure without demeaning, belittling and getting all mommie on him. He is my father-in-law after all, he may be 74 and have a debilitating chronic terrible illness, but he is still a man, and he doesn’t need a mommie.

“So… Griffy,” I offer. “Ya think this new guy will have a clue about your MSA?”.  I bait.

Demeaning the white coats always seems to work, he likes pick on college grads, his favorite topic after construction jobs and real work, the kind men do outside.

“Probably not, they’re stupid arse holes,  all of them…”  came his quick grumpy but comic  Liverpudlian reply.

Now we are getting somewhere.

I just have to be present.

Be here in the moment with him.

That is all he needs.

It is all anyone really needs.

To know they aren’t alone.

He went on to do well, and liked the new Dr.. He joked and laughed, and thankfully this time there were no shots, and I wasn’t asked to hold his leg.

But its worse for those of us who are the watchers, the caretakers, the ones standing bedside,  holding the hands, and wiping  the tears. We are the ones who watch, and worry and stand and witness until the real silence comes, after the beeping alarms all fall quiet.

We wait until then,  we are present until then, the moment we are left behind.

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This I can Do

“Morning”.  Always, every time,  his first word.

Then the stumble, the squat, the reaching for a chair.  Half dressed he appears now, no belt or socks, there are in hand, shirt untucked, pants open. He sits for a moment, “Boy… I’m dizzy this morning”, always comes next.

The trip to the bathroom when he has recovered, then coffee and meds, and porridge and TV news, and news paper, and crossword,  always in pen.

“Going to look around the estate.”  His walk around the house and yard, wide-brimmed Panama Jack straw hat on. He squats, every few feet,  then looks to see if I am watching.  Like a mother of a toddler, I try not to be alarmed at the stumbling steps. I wave and move on with the morning.

It takes a few seconds for my eyes to adjust when I enter.  

Always the same, drapes and blinds closed. Allow nothing in!  No air,  no light,  no life. 

Sheets and bed covers pulled up straight, over the pillows up, cover it all up, no room for play, he has made the soft white feather down duvet look ridged with his stern bed making.

There is no comfort here. The air is still, and the odor unpalatable, clean-up  a must. 

I take the dirty clothes to the laundry room, strip the bed, open the drapes and blinds,  let in light and air and life; it rushes in and fills the dark places.

Lemon pledge happy spray, wipe and wax clean. Vacuum away the tracks and stillness,  spray and wipe the baseboards, Mrs. Meyer’s lavender  all-purpose meets lemon and light, exhale.  Better.

Sheets fresh bed made, clothes hung, whites away in drawers.

 This I can do.

Melon and berries, half a ham and cheese with tomato and mustard, apple juice and something to crunch,  call him in,  for a simple lunch.

This I can do.

Find the channel, watch him sink into the chair,  feet up, water and medicine down, sometimes he naps, sometimes not. Sometimes  he just sits, waiting.

I know his favorite part of a chicken,  the wings.

He says he doesn’t like sugar in his coffee, but if it is easier he says, “go ahead and put one tiny sugar in mine too,  just like yours.”

He doesn’t like to ask for help.  He will sit and watch nothing rather than ask for help in changing the channel.

He does not want a wheel chair, although he is house bound without one, he will not even talk about it, yet. 

His vision is worse when he awakens in the morning and better as the day goes on. 

He loves history, and the History Channel, and programmes which show men working,  “a good days work”.

He forgets things, sometimes right after I tell him, he loves to putter in the yard, pulling wayward blades and weeds, and I know one other thing. 

I know he is just waiting to die.

This I can not do.

Just waiting and watching,  along with just shutting up,  are not really my strong suits.

Griff  started working at 14 on the British Rail, worked there for 19 years before coming to the United States and becoming a pole climbing,  gaff wearing GTE lineman, then a cable line trench digging crewman, and finally hotel maintainance man; has always been an active guy.  

A mans man, a stick- the- desk- job- up- your -ass,  kinda fella.

He even went as far as turning down promotions that had  even a slight odor of management, he preferred the crew, and camaraderie, the thrill of plain hard work.

While still in Florida, Griff and I were reading the paper on the patio, an article announced the rail system routes for a new proposed electric rail from Tampa to Orlando. Griff reads the article, lowers the paper, looks at me and says,

“I could get a job on this new rail, they will need men with rail experience…”

I nod. Silent.

Multiple System Atrophy, autonomic hypertension, parkinsonism symptoms, dementia, and age 73, but damn it,  he could do it.

Have to admire his work ethic. 

He is nothing if not a man who after working for almost 60 years, is still defined by the hard work he loves.

He is also defined by the things he doesn’t  like, paperwork, writing, and generally doing anything with the finances, or educating himself about his illness and general physical decline. This  other stuff was left to Hilda.

With her loss, he is left  really non-functioning in these areas of his life. He is a man who doesn’t understand anything about what is happening to him on the most basic level, and so he sits, and tells me, 

“This waiting to die,  really sucks.”

He leaves the room.

This I can not do.

I think of the line from The Shawshank Redemption, but leave it alone. 

After a while I knock on his door.

“Are you going to bed or what?”

“I was reading about my disease, my neck was sore and I wondered if it was because of my crouching tiger syndrome.”

He comes back into the living room.

“You shouldn’t look at a medical book that is 25 years old and produced my Readers Digest Griff, we have a computer ….I have a whole bunch of information on your illness printed out, do you want to see it?”

I get it and hand it to him.

The conversation is started, I ask him what he knows about his illness, which turns out is nothing other than the names, and the fact that the Doctors told him,

“There is nothing we can do for you”.

The web sites are few, the support groups sorely lacking in support, but a DVD is available I find on my search for information.

He watched the 30 minute infomercial about MSA, turned to me and said,

“I could relate to a lot of that”.

“Did you know I read that Johnny Cash had MSA?”

Then came the question…

“Did he die of it?”

I know he isn’t really asking me if Johnny Cash died of MSA. I know what he is really asking is Am I going to die of MSA?

I remember while in Florida before Hilda died, Jackie arrived and Griff grabbed my arm and said,

“Don’t tell her that her mother is dying.”

“The hospital bed is in the family room, hospice is in the picture, I have called her to come and you really don’t think she knows her mother is dying?” I asked.

Lets just say this side of the family is a little emotionally constipated at times. Over protective stick your head in the sand when it comes to emotional issues kinda constipated.

“Griff you know you have a debilitating progressive illness that will not stop. We don’t know what tomorrow will bring, but you have to decide what you want to do with today, just today, ok? ”

He nods.

“He died of breathing complications I think,  which can be a leading cause of fatality to those with your illness.”

“Oh” came his reply.

“But it also says most folks have issues with incontinence, and you don’t …”

“True, that’s true…I read that too!”

I look outside, see the wilt on the hydrangea bush.

“So do you think you think those plants in the pots need a drink or what?”

“I”ll get on that.”

“I’ll get the beers.”

I watch him shuffle off , and I get the beers knowing,  at least today,

this I can do.

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Circle of Life

She teeters with joy and glee, full speed ahead, unbalanced,  side to side almost tipping,  arms out, learning to walk.  The hardest part is changing directions. She falls, resorts to her familiar and quite efficient mode of transport, the Mowgli walk, as in Mowgli from the Jungle Book. She is on all fours, back legs straight, bottom up, she scurries away,  bored with us, her captive audience.

He is almost upright for a moment, then stoops over, holds his thighs with straight arms, becomes a human carpenters square, bending over more, then finally squats to the ground hands steady in front of him, keep him from tipping all the way over and going ass over tea cups.  He neither likes nor appreciates an audience, and one politely asks if he is ok, to which he always replies, “just a little dizzy”. 

She walks and toddles to our clapping smiles and laughs. Looks for cheers to continue.

He stoops to silence make no fuss, he is after all, “just a little dizzy”.  The protocol then is to look away after making sure he isn’t going all the way,  unconscious fall on the ground down better get him to the ER for stitches, down. It hasn’t happened yet, he feels it coming he says, a strange vertigo sensation, floor rising, and falling away, the extra special effect played out in real life,  I wonder if it feels  anything like  Hitchcock made it look like in Vertigo…

She is taking first steps, soon running off  into the world,  ambulatory and free at last,  building up speed,  hard to catch.

He is taking some of his last, refuses assistance, wheel chair or scooter.  He will soon slow and will  maybe cease refusing. His illness is unrelenting, progressive and terminal. I think when he is reduced to doing the duck walk  to the bathroom, he will allow  some assistance.

She is weighed and patted and checked for progress, milestones marked cause for celebration.
 
He is weighed, and patted the progress of his disease is noted and  is always cause for concern. 
 
He suffers from Multiple System Atrophy,  a slow degenerative disease different from Parkinson’s, although it shares some of the same delightful characteristics.  
MSA is also called Shy-Dragers Syndrome, that’s what Griff calls his disease, or rather what he used to call it.

He started by calling it Shy-Dragon, which then morphed into Crouching Dragon since he spends the majority of his days crouched in a squat, a literal squat as in,  this is how a woman pees when camping,  squat.

The squat is his go to position for trying not to pass out. I have decided to count how many times a day he squats it must be at least two or three an hour, I’m betting 30 for the entire day. I am counting them, starting tomorrow for he never reports these almost passes out “spells” to the Dr. because he tells me, “Almost doesn’t count”.

Bullshit. I am counting.

The humor of squatting to remain erect isn’t lost on me.

Shy-Dragers became, Shy Dragon, then Crouching Dragon, and finally can you guess?

He now refers to his illness as Crouching Tiger Syndrome. 

I have long stopped correcting him,  whats the difference, Shy Dragon, Shy Dragers, Crouching Tiger,  MSA,  it is all the same and all terminal.

So yes Mr. Shakespeare a rose by any other name would still suck, totally.

I find myself circling around, returning to the ever vigilant newborn mother days, constant state of worry,  concern and caring because of his illness.
 
The ever listening, did you hear that? What is that noise, check the door, crack it open watch the falling chest, breath breathing, exhale, safe.
 
The ever watchful days of new gains,  the firsts,  breast or bottle, cereal, solid, watch the Cheerios fall in fistfuls to the floor,  days.
 
The exhausting constance of new motherhood that was balanced by the joy of watching them grow, tempered by the nine months of  wait to hold them…
 
How easy my return, how simple it is to slip on like an old pair of slippers our old roles and duties, my return to days exhausting constant caring.
 
Again the constant  listening,  what was that noise? Did you hear that? Is he ok? Did he fall out of bed?  The first open eyes wish of too-early mornings, please just a few more moments of sleep, the bargaining for added moments time to sleep, please please please don’t let him be awake just yet.
 
Again the ever watchful eye notes the water marks, not gains but losses, the confusion, he started to take the wrong pills, forgot the day, the time, the outing. He didn’t wash his hands, he didn’t brush his teeth, he didn’t shower.
 
Constant caretaking that is again unbalanced, full of watching and worrying, these not the first events of life they are instead the last, the burden of knowing it consuming.
 
It could be his last…fill in the blank.

She my granddaughter.

He my father-in-law.

 One is a new arrival, one approaching departure.  

I thought  they were coming and going, passing while going different directions, but now I see it is all giant circle, a giant turning, for everything there is a season turning returning from whence we came turning…a giant circle of life.

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The Mommie Mind

Drinking my third cup of coffee, it’s almost ten, dishes are done, dogs fed, the rabbit has already had his way with my arm while I filled his rabbit chow bowl to the brim, newspaper is ready and waiting, coffee made, porridge all a go…Griff hasn’t made his  first appearance yet. 

Houston we have a problem…

I keep watching the clock, telling myself five minutes, in five minutes if I don’t see him or hear him I will knock on the door, and check. Crap.  I don’t want to do this….shit.

The mommie mind, when ever there is a delay, it is always the worst case scenario.

Tardy teens draw no anger from me,  at least not at first as I have already buried them and visited the gravesite, they are greeted instead with rapturous hugs and tears, quickly followed by, 

 “If you don’t call next time you are going to be even 30 seconds late you had better really be dead or I will kill you…”

 The Mommie Mind herculean in its non sequitur leaps and jumps through  an alternate reality.

A late husband,  and I am an already a widow looking for the Sheriff to come a knocking with his notification of the horrible car accident…delays of any sort  have me checking the life insurance for payout policy…I am mommie  feel me worry.

Tick… tock…. the designated five minutes has past.

I know Griff is dead for sure as I stand and start the long walk from the kitchen to his room. I imagine the phone call I will have to make

” Well officer, he usually did get up earlier than 5pm … but I was afraid  to check you see….I didn’t want to open the door….can I use an Amex for  posting my bail?  …

or

” Sorry,  everyone …I went to check on him and he wasn’t moving” 

…shitcrapfuck .. crap.. crap.. crap.. each slap of a bare foot on tile amplifies my heart beat … Where are we going to put all the relatives when they come for the funeral? We don’t have anymore space to spare, maybe the New Holiday Inn up the road ? It will have to do, will they be insulted, maybe just the older relatives can bunk in here….

The door opens, “morning…” Griff offers as he shuts the door and shuffles toward me. 

Whew!  Houston we have lift off!

“Hey Griffy I am going to do you laundry today..is it all in the hamper?”

“You have already done it.”

 No..?  just to myself…

“I’ve just hung it all up,”  he says.

Later when he is outside in the garden, I enter his room, the dirty hamper empty, and the obviously dirty clothes worn while working in the yard are there, all hung up in the closet. I open the drawers, yup,  dirty too,  back in the drawers. I’ll spare you dear reader the description of Griff’s dirty underwear.  I open the curtains, the windows,  air it all out…then I put all the dirty stuff back in the hamper, poke my head out the door, all clear,  he is still outside.  I make a mad dash for the laundry room and start his laundry hopefully it will be done before he  either forgets or remembers he hung up all the dirties.  I can’t keep it all straight.

I sit down watching him out the  kitchen window.

He is watering the pool.

I  can see him hose in hand, rain wand extender attached to hose, watering back and forth back and forth, sprinkling the surface of the pool all while seated in a patio chair…mindlessly …I think of my children,  running through a sprinkler on a hot day, the fresh laughing faces discovering cool water, I wonder what he thinks he is doing.

He is actually watering the pool. I ponder the consequences of my inaction…

Ever mindful of my words and thoughts and deeds,  my plan of action when it comes to Griff has been slowly evolving over the past few weeks  into a single mindset,  a single question I ask myself before interjecting,  interrupting,  or stopping his course of action…what is the harm?

So whats the harm…  Ok… other than our water bill will be huge, and I will have guilt about said water usage what is the harm?

I evaluate the consequences of his actions decide that he can water the pool all he wants to, go ahead knock yourself out…a smile builds in my mouth, I am anticipating the conversation that will happen when the water bill arrives, watch him for a few minutes through the window,  it’s not long before he gets up turns off the water, and comes over to sit next to the back door.

He is outside on the patio, sitting down in a chair, which is not normal.

There are only two normal  Griff positions outside of  the standard sitting while watching tv position.

It is either,  a. upright but stooped over shuffling….or  b. squatting down,  hands upon the ground as he is dizzy has had major vertigo and low  blood pressure to the point that he has just almost passed out.

I am on safari now, watching from my blind in the kitchen, absorbed in this totally new behavior…

“He is taking off his shoe,” its Sir David Attenborough…he is my field guide on this mental adventure…. “he has left the left shoe on,  fantastic…”

ok Sir David you keep a look out  and keep up the narration while I get some fresh coffee.

“His sock is now off too, he is trying to raise his foot, as if examining it somehow….looking for something…”

 dittle dittle dumpling my son john…went to bed with his breeches on….one shoe off and one shoe on

No breeches on with Griff  as he has explained numerous times, he sleeps in the buff, or whitey-tighties only…  pj’s bind him…Nightly I lay on one side of the wall listening to him on the other rolling over in  his bed, I need my iPod just to erase the naked old man images from my twisted mind…you were saying Sir David?

“He has one shoe off, and he seems to be looking at his foot,  now he has some sort of tool in his hand….”

Crap. My mommy mind races ahead… is it stitches he needs?  he has cut himself? …… my imagination takes flight… he has  gangrene and needs an amputation.. or worse  he has stood on a rusty nail,  God only knows when was his last tetanus shot was….thats all I need is for him to come down with a case of lock-jaw…on second thought that might be easier than feigning interest in the same story he tells every single day about the beauty of his garden in England totally being dependant upon placing the grass clippings under the rose bushes….

“Griff what are you doing?”

“My foot hurt, so I took off my shoe, and now I am clipping my toenails….”

I have to look, I don’t wanna…but I gotta…mommie mind races.

The blood wasn’t the worst part, it was actually the severity of the sharp edges clipped into a sharp v shape, and the unusual greenish-yellow white hue of his nails that really scared the crap out of me. I had been around Griff for more than three months, but never seen his naked feet,  it’s the small things one learns to appreciate.

” How long have your toes been like that?”

” Just a few days”

Liar liar pants on fire…I am not touching them..no way Jose.

“Lets get your shoe back on, we are going to the e-care ” is what I said, what I thought was, wholly shit how did you get nail clippers…  and you have Parkinson’s and can’t see …whatthefuck are you doing trying to clip your own toes!

It was a toe fungus, no meds too dangerous causes liver failure says the Doc. Get thee to a podiatrist  he will need them filed and taken care of the suggestion.

” I can clip my own toe nails

” Obviously you can’t Griff….did Hilda clip your nails for you?”

“Yes”

I hang my head, kicking myself for not thinking about it sooner.

Mommie Mind races ahead,  and I  know two things with absolute certainty.

The first is,  from now on I am wearing flip-flops in my shower….

The second is,  its pay back time for the lady who always asks me if I want my moustache waxed every time I get a pedicure….she  is going to get a new chatty elderly male customer, cause this chic is not going down.  

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