Category Archives: Sandwich generation

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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Filed under care giving, Caregiver, Elder Care, Family, Griff, Life, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, True Life, Writing

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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Filed under care giving, Caregiver, Elder Care, Griff, Humor, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Stories, Story Telling, True Life, Writing

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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Mothers Day

February 2002

I didn’t see her at first. I turned and stepped down into the room, and couldn’t see her beneath the huge mountain of blankets and pillows on the bed. She was tiny, with size five feet, and fingers, and she hated the way the steroids made her slight frame swell. It was common knowledge that my mother limited and self regulated her own medication to hinder that most undesirable effect, looking fat. It would not be a stretch to say my mother was a slightly vain creature.

My sister had called me and asked if I was ready. She the nurse, the caretaker, the one we all turned to in times of medical crisis called, had called me, of course I was ready. I am coming, I heard myself say.

Yes, full time college student and mother of three, but I heard myself say, I am coming. Now maybe other husbands are more modern, more hands on, but mine, well he is the ” where does the silverware go?” questioning type on his rare empty the dishwasher trek to the kitchen made twice annually on both Mothers Day and my birthday. But I didn’t think, I knew I had to go. He could handle it. The family could handle it. And they did.

But I could not stay away. That is what I have come to realize. My motivation for going really had more to do with me not knowing, not seeing first hand than with anything else.

I drove to school and withdrew, not knowing when I would return. At the registrar’s office I filled out the forms…where it asked for reason I simply scrawled, my mother is dying. And as I write this I remember being worried if I had spelled dying correctly, one very rarely writes that word, and it looks just wrong.

The nurse sister, Dawn had two small children at the time, a newborn, and a two year old and I flew from Texas to Connecticut to help her fly back with the boys. We were numb. She had been there already but needed her children, so I flew to her, and we flew back together. Mostly quiet on the flight, and were searched thoroughly, including dumping of breast milk and taking off of baby diapers, as we had purchased one way tickets to Phoenix, a cardinal sin, we didn’t know how long we would be.  Two,  grieving,  five foot two inch woman terrorists with their extra mini me’s age two and newborn, are after all an obvious threat to national security.

My father was not sitting not next to mom, who was still a mass under the pile of blankets, but on the sofa, in their garage conversion apartment.  They came full circle, was my first thought. When first married, my parents lived in cold water flat in Springburn Scotland, with a shared bath down the hall. All the women who lived on each floor took turns sweeping the floor and stairs my mother told me. And cleaning the bathroom, which was only a toilet and a sink. For a shower or bath they ventured down the street to the Baths. Everyone they know lived like this.  They lived in a tenement, a one room apartment.  Here they are again, living in a one room place with a shared bath down the hall, my brothers converted garage.

Dad clutched a paper in his hand, which had been folded in half length wise. He moved the paper from his hand to his back pocket, but never put it down. Much later he did put it down, and I was able to read it.  

It was the signs of death, a sheet that a hospice worker had given him, and next to each of the signs or stages, were numbers written in his angular slanted print. It took me a moment, but I finally realized that the numbers weren’t numbers.
They were times. Dad had been keeping track of the moments, the times when each stage started and completed. He wrote the time each symptom or stage had appeared neatly in the margin, some were underlined once some twice.   At the bottom of the page was neatly written,

1 egg,
½  a cup of oat meal,
1 pound of ground chuck
Salt
Pepper
350 for 45 minutes

It was Mom’s recipe for meatloaf. 

He was doing what he could do, which was watch and tally, and try to not think or feel, it was all he could do to survive. She died a month shy of their 45th wedding anniversary. Mom may have been dying but Dad was not going to be without her meatloaf. 

Dawn and I went to Moms beside, where my dad not knowing what else to do had heaped and tucked every blanket they ever owned on top of her seemingly sleeping form. She was medicated with liquid morphine, a little dropper vile was bedside, Dawn examined it with a knowledgeable eye and said, “ Jesus Christ Dad,  Moms  sweating to death here…”

And then Dawn put me to work. We were doing what we could do which was to wash and clean, and care, and try not to think or feel, try not to fall apart like a poorly basted dress…that could come later. Now was the time for ushering, for helping her teach us our final lesson.

We took the blankets off, one at a time, pealed them away and with every layer, her form became smaller and smaller, until at last she was there, a slight childlike form, her night gown soaked through. Mom needed to be washed. So we washed her. We filled a basin and got her favorite rain bath and started to wash and dry each part of her as she had done for us.  Our cheeks and chins ran with tears as we acknowledged her body before us, her tiny feet which once danced and wore beautiful shoes, her legs that ran and chased us, her arms, that held us, her breast which fed us, we went slowly and carefully with great care, and when at last she was clean, Dawn schooled me in changing a bed sheet with the patient still in it.  My sister and I moved as one as we stripped the bed, carefully holding mom and rolling her ever so slightly to first move the old sheet, placed on a new one. Each movement was slow care-full, full of thought and purpose.

 We watched and listened to her breath between every motion. We got her new nightgown, and cut it up the back as to more easily dress her and to not disturb her peace. We stopped and looked at each other then, just before redressing her. It was then Dawn left the room and returned with the Jean Nate. We then proceeded to cover our mother in Jean Nate lemon fresh fragrance. We giggled a bit, slipped her arms in her fresh gown, propped her pillows to help with her breathing, covered her with a fresh soft sheet, and then with mom clean and seemingly more at ease, we sat beside her and had a cup of tea.

Our mother’s death bed became our playground then. We lay next to her, sat next to her, and ate our meals next to her. We even had the babies on the bed, right there next to mom. Dawn was braver than I, she was the voice then, I was not. I was the watcher, helper but she was the one who spoke to Mom.

I remembered music then, and ran for the CD I had brought from home. I thought that Mom should have something to listen to.

She had not regained consciousness, not since a few days before our arrival. But I felt on some level she was still here, smelling the Jean Nate. So I put on the Enya CD. It was soothing and Scottish after all.  And those words usually can’t be used in the same sentence.  For the next few hours we watched our mother breathe, and listened to her breath, and listened to Enya sing our mother into death.

Her breathing was labored, and had a strange pitch a whining wheeze that is referred to the death rattle. Each breath was different, no timing or rhythm, no flow. It was awkward and uneven. Time was stopped for us, was it only a matter of hours ago we entered and found her beneath the mountain of blankets? It seemed like days. We watched as her chest rose ever so slightly. It would fall, and we would look, and place our hands on her chest to feel the rise come again, wait, wait to see if it she was going to take a breath.

And then while Enya sang the song, The Wild Child , she took her last breath. We waited for another but it never came.   Gone with the last breath was the strain the tension and the pain from her face. She looked younger after death, she looked better after death, she really did. 

The Harvey’s Bristol Cream Sherry was brought out soon after, and we sat upon our mother’s bed and drank a dram of her favorite drink and touched her and Dawn told me the story of her last uttered word.

For Valentine’s Day, Mom received a box of chocolates. She was a chocolate hound….She loved British Chocolate, like Black Magic, Flakey bars, Mars bars and Cadbury Fruit and Nut. Rose’s chocolates were also a favorite. Soon after receiving candy for Valentines, Mom lost consciousness. The hospice worker was convinced she would never come out of it, and it was then I got the call from my sister. But Mom was not through yet. A few hours later, she regained consciousness, yelled “Chocolate!” and without opening her eyes, reached into the box on her bed and stuffed it into her mouth.

Her last word was CHOCOLATE!

Mom stayed with us for a few hours before we called the number the hospice worker had provided. We were comfortable there, talking and drinking and telling stories. But we had another task before we rested that night. Soon the time came and we had to pick out something for Mom to be cremated in. It didn’t seem fitting after all that she be cremated naked.

Dawn and I thought a while, and then it hit us. The purple dress she had worn for her 25 year anniversary party. It was sparkly and silky and she had loved it.

We placed her favorite animal head slippers on her feet, and gave the attendant her purple dress, and that’s the way she went out into eternity.

I hope she liked what we picked.

Like the forgetfulness we can have after having a child, looking down into that new face, our memories of  the hours of hard labor fade. Soon some of us are even lulled into a false memory… it wasn’t really that bad, wouldn’t it be wonderful to have a baby in the house again?

Nature has a way of protecting us. If we really remembered every agonizing detail the human race would end afterall.

It the same with death.

 The first time I waited for death it was my own mothers, in February 2002.

The second  was my husbands, in February 2010.

Happy Mothers Day,  Helen and Hilda. 

Love,

Sha

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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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The Torn Lands

Purse, photo id, wallet, cash, boarding passes for me and Meg, check. 

Suit cases standing guard on the car port, the super shuttle scheduled for a 10am pick-up, the circular nature of my coming and going to Sky Harbor Village isn’t totally lost on me. I am leaving. 

Griff has had his porridge, I have stripped the bed, thrown the sheets in the washer, walked through the entire coach checked and double checked, closed windows, packed the snacks for Griff and Gary for their moving truck adventure, ensured the meds and Hilda’s cremated remains are in the cab and not the back of the truck, placing her next to the authentic Amish remote-controlled fireplace, tartan shot glasses and boxes of paint roller sleeves was just not a civilized option.

Standing at the sink washing,  what as god is my witness is my last sink full of dishes by hand, when it happens.

“It’s all over,” the husband whispers as he hugs me goodbye, “it’s all over…”.

The room went totally silent,  one of those moments of absolute clarity that pulls you inward, time stops, the moment freezes in your mind and you say to yourself, this is important, this is the beginning, or even,  this is the end. It is a fork, a turn,  a moment,  a change and I knew it was happening while it happened, and I knew he was absolutely dead wrong.  

all over? it is only beginning, nothing is ever going to be the same again…can’t you see it can’t you feel it?  not wanting to start, to cause, to feel,  to speak….any words which can not be retrieved… I remain silent. 

Griff  is moving in. Griff will be living with us until the end,   if we are lucky. 

If we are lucky … he will die in his sleep in our home.

If we are unlucky,  he will have to be placed somewhere only barely tolerable when his needs exceed either our physical or mental abilities  or both.  

No more moments alone, no quiet  coffee and  cardinal serenades on the patio when the youngest is off to school, no more blasting the radio all the way fill me up loud, no more singing  off-key whogivesashit while scrubbing, no more alone.

Alone time. A gift. As a young mother I remember seeking solace in a closed bathroom door, opening a tampax wrapper only to hear little mouths pressed against crack of the door, “Mom? Are you eating candy in there?” Quickly followed by twenty little fingers wiggling under the door.

 Alone time. It is a treasure that I hold dear.  I have almost made it through the gauntlet of three children. Waited through cross-country moves, leaving family, carpool and soccer, baseball, riding lessons, puberty raised to the third power, cooking and cleaning and washing and whew, almost there,  I can see the light….WHAM! gotcha. Griff can not be left alone.  

Instead  I am making porridge every morning, his tv now a constant obnoxious companion, his shows, his familiar friends. Always lunch at noon, pills  to be dispensed,  always watching, always mindful of his needs both physical and mental, I am again as a mother to a small child, carefull of tone, and sound and query,   Griff  do you need juice today?  Griff you need a shower, have you brushed your teeth? Did you use soap?   And the very important question and not even the slightest exaggeration,  Did you put on deodorant?

Call that “all over” ?  silly rabbit tricks are for kids…..we are simply changing locations.

 I am torn between saying and not.   I live there, the in-between, the torn lands,  it is  my home now…I say nothing, close my eyes. 

Like  heroine in a wuxia tale,  all this in a moment,  seconds stilled,  I draw my sword and soar. I fly away on tree tops, wild hair and silk robes floating, wind through my soul, red-cheeked fresh sea breeze clean …  freedom ……then …falling. 

The honking  grounds me instantly, my blue super shuttle chariot awaits.

I was fine until  I saw here coming in her pj’s from across the street, the neighbor, the life line, my friend, my new Canadian soul sister, Karen. She,  like I,  a daughter-in-law who stayed, watched and buried, was coming to say good-bye.  Like only those who know the journey her hug huge and heartfelt tight, she whispers, “Forget  the counting to ten, just drink the wine”.

The runny nose sniffles and tears didn’t stop until we arrived at the airport, where my daughter Meg my companion for the flight home  just smiled at me and said, “I knew you were going to cry the second I saw her coming.” My Meg is always watching.

The problems with planning is sometimes things don’t quiet go according to the plan.

My plans were to have the weekend to ready and recover, before father and son arrived, so naturally, it didn’t happen. I had a shower seat to purchase, and hand-held shower to install, a  room to ready, and my expectations were they would arrive at noon on Sunday. So when the call came at 6pm  Saturday that they were nearly here they had driven straight through because of the weather, I was stunned. Numb really. I didn’t even get a full day without dispensing medications, preparing  porridge or watching his tv programs.

Six inches of snow in March were all it took to send me completely over the edge.

The truck empty, house cluttered, piles and boxes everywhere, I seek a small space of my own.

My bathroom once my personal refuge, now has a grey plastic medical supply shower seat in it,  the big walk in shower he can use safely, his belongings moved to the top drawer by my sink, the master bedroom now his path to this the safest shower. There is no  more peace there.

The office where I write is gone, his bed and wall unit occupy the room I daydreamed in.  There is no more peace there.

In the end I roamed the house, and found a space, it has a seat and a light and most importantly a door. Oh and it has plenty of food.          I escape to the pantry, my refuge now, where I sit on the rolling stool I got at a garage sale. The old stool has wheels and can be easily pushed with a foot, but stand upon it and the wheels disappear, and it squat sturdy strong. It holds my physical and mental weight without complaint.

 Awaking to find the Amish fireplace with remote in the living room was actually the tipping point.

I escape to my secret refuge place, I sit and weep into the dish towel  that always seems to be across my shoulder.

The torn lands are so unsteady a place to live. 

When I do speak I am afraid, I hear the words, feel them spill out upon the ground and anchor my feet with their weight.

“I can not do this”

He looks pained, I can’t look directly at him. I am in the torn lands. There is pain in every direction, no answer a clear solution.

” You have to do it,  what else can we do?  I made a promise…”

I weep and kneel head bowed, a moment of surrender head buried in a flowery dish towel. I am on the floor, in the torn place, where there are no clean edges, no clear paths, I hear myself  say, “what do you want of me?”

” I want you to hold it together, you have to hold it together”

So I stand and find the rough edges, and hold them, piece them together for how long I can not say.

I am living in the torn lands, between saying, and knowing and wanting and doing, The Torn Lands.  

I am afraid because it is becoming familiar territory.

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Another Moving Day

In the end it took five adults a little over seven hours to pack seven boxes,  one chair , one authentic Amish built remote-controlled fire place-space heater that is on wheels, and one wall unit,  into the moving truck.

Seven hours.  Seven long hours. Seven long hours like giving birth hours, or SAT or LSAT or GMAT  hours.

Not to be confused with seven  Napa hours, seven beach hours,  seven brunch hours,  or seven,  watching all three The Lord of The Rings Movies in one day, hours. 

After seven such  hours with one,  well-meaning but silent husband,  and three retirees,  two of which were men who always knew with unshakable certainty  the one and only correct way to pack every single item, and all this taking place in a trailer of less than 1000 square feet, its only natural, isn’t it, to have lost it?  Anyone would have, right?

They arrived an hour early, fresh,  fed, rested and ready to go.  The in-laws best friends an ancient force of nature complete with rope, string, paper for wrapping, and an absurdly positive attitude.

I am exhausted just looking at them, still in pj’s and coffee cold again in my hand. I have zapped said coffee three times already in the micro, I retreat to dress, give up on a hot cup of coffee, pour it down the sink, and ask for patience for the day… patience and kindness that’s all I need.  Ok,  maybe patience, kindness,  and a smile would be helpful…..but I would really settle for patience, that should cover all the bases, right?

My husband Gary is here, Mr. Best Friend drives him to pick up the moving truck, I watch them leave already using a portion of my patience pie, calling him a traitor under my breath as this was not the plan, and if ever I needed to stick to a plan it was today. Like a master chess player I realize this opening move has left me vulnerable.  This was something I had wanted to avoid at all costs, being alone with Mrs. Friend. I will need to change my game plan. All I can think of is either an extended mental escape or a feigned instant bout of a mysterious stomach ailment which places me in the bathroom until the moving truck arrives….

Mrs. Friend, a grieving mother in her own right, fragile, one with a burning need to busy her hands, busy her mind busy her heart. I have already had an entire day with them filled with mourning, hand holding, tears and sopping kleenex, lunch and right hand only turn driving. I will not survive another. 

“Whats first?” she asks.

” Well… we don’t really have any room to do much until we have boxes to put it in…until they get back with the truck and boxes….Jackie is coming up this weekend to close up for the season, so….there really isn’t a lot of stuff, he is only taking a few items that will fit in his  bedroom, and that wall unit in the other room”…

Griff appears on cue, with a pile of glass wear from the wall unit. “These are going to Texas.. .” the tartan embossed shot  and whiskey glasses held aloft, I close my eyes unwilling them to look any further. My house is already filled to the brim with crap. I have secret dreams of selling it all and moving to a barn filled with books, a kindle or an iPad, and nothing else.  Ok maybe food,  a kindle or iPad, but absolutely nothing else. Well  maybe a bathtub, food, a kindle or iPad…but nothing else not even a fucking television.

Authentic Tartan embossed glasses are not part of  my imaginary barn decor.

“And you are taking these photos right?” she asks.

Soon the kitchen and dining room table are covered. They stack and retrieve items,  a pair of ceramic clowns, glass sun catchers, Norman Rockwall authentic print plates in two convenient sizes, an incomplete encyclopedia set missing both the L-M-N  and W-X-Y-Z issues, an atlas of the United States from 1973,  countless ancient trip tic road maps from AAA , authentic tribal beaded horn and rain stick from South Africa,  various power cords to god knows what, surge protectors, extension cords and my personal favorite, old tech manuals  and proofs of purchase receipts for electronic items broken and tossed long long ago.

Little boxes,  little boxes made of  ticky tacky …

I close my eyes and take a breath, I don’t need folk tunes rolling around my brain today, thanks…. wait maybe I do. A kindred spirit, Miss Malvina,  even if  she is singing in my head it does seem to quiet the pounding pulse above my left eye, and it stops the twitching too…

I let the tune silently wash over me, 

Little boxes on the hillside,
Little boxes made of ticky tacky,
Little boxes on the hillside,
Little boxes all the same.

Slowly I realize the song is working…I wonder if I could ever hear such moving work live in concert,  wonder if my tears would well on the outside and spill over as the air carried the soft vibrations over me…I know I would interrupt others…kinda like when I eat and moan at the same time.

“Griff do you think you need to look in the shed for those tools you what to take..?”, distraction my first line of defense.

There’s a green one and a pink one
And a blue one and a yellow one,
And they’re all made out of ticky tacky
And they all look just the same.

“Oh yes… I need to do that…”, He happily goes to the car port and starts piling up the patio table full of flotsam and jetsam from the shed.

And the people in the houses
All went to the university,
Where they were put in boxes
And they came out all the same,
And there’s doctors and lawyers,
And business executives,
And they’re all made out of ticky tacky
And they all look just the same.

I bring in a box of newspaper for Mrs. Friend, busy hands my second defensive maneuver, it means the chances of her tears falling are lessened.  She wraps and rolls  the glasses, pictures, and chats.  An hour passes before she pauses, and then whispers,

 “I can’t believe they are both gone”. 

Please let her be talking about our husbands taking fucking forever picking up the truck…I don’t want to look up, but shitcrapfuck I do.

 Tears are falling. She takes her hanky from her pocket and wipes them away, I am empty, I have no words to fill the gap, instead I place my hand on her arm, it’s all I can do. It’s not our husbands, its her daughter and Best Friend  Hilda she is talking about, dying four days apart.…. keep singing, keep singing…

And they all play on the golf course
And drink their martinis dry,
And they all have pretty children
And the children go to school,
And the children go to summer camp
And then to the university,
Where they are put in boxes
And they come out all the same.

“I’m calling them to see whats taking so long….” I offer.

The phone call was short stern and offered no explanation other than, “We are almost done, I’ll tell you about it when I get there..” click…

Oh no he didn’t.

Instantly I am a wound up tin toy, the kind of toy car that pushed backwards, with a series of  click click click almost siren sounds,  revs  up tightly ready for forward motion…  I fear for the husbands  survival upon his return and at the same time silently select the series of colorful adjectives I shall hurl in his direction.

And the boys go into business
And marry and raise a family
In boxes made of ticky tacky
And they all look just the same.
There’s a green one and a pink one
And a blue one and a yellow one,
And they’re all made out of ticky tacky
And they all look just the same.

Thank you Miss  Malvina Reynolds…it helpes …

” you are welcome darling”,  she answers with a smile.

The sing-song folk concert in my head successfully distracted me and the husband survived in the end. I simply looked at him and mentioned I didn’t like being left with a grieving mother, and if he ever repeated his… shall we just call it a  supremely brief phone  communication style?  If ever repeated…I would not be held responsible and  I know in my heart a jury of my peers would  never ever convict me…

The one only true loosing of the temper came at the very end, in the shed as father and son were tossing paint rollers into  the last box,

 “just filling it up because there was room”.

I knew intellectually that the more familiar the setting, the easier Griff would adjust. I had packed his breakfast spoons, worn thin with everyday use, thought the wall unit in his room filled with familiar and sentimental objects would lessen the shock of such a drastic move. I understood the reasons for biting my tongue and letting things go, and  all of the mornings painful events, watching friends say a long good-bye. Now…. I didn’t like it, but I understood.

But packages of paint roller sleeves? The fury was fast and fiercely executed.

“You gotta be shitt’n me! ” I exclaimed in unison with my long dead father,  “do you  realize I can’t even get my fucking car in the garage right now… don’t you?! Fucking paint rollers? … are you shitt’n me?!”

Yes,  I sinned. I said fuck many many many times, and to tell the truth it felt good. 

They just blinked at me. Kept the rollers in the box, and simply ignored my exsistance…I left the shed deflated, shoulders slumped, and  sulked off to seek refuge in internal folk concert.

Defeated and deflated I wasn’t able to escape another lunch date,  the return drive using only right turns and parking lots, nor witnessing a  few more tears, but armed with  the actual Malvina singing in my ears and my heart, I survived  another moving day.

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The Razors Edge

You can say no, they simply will ignore the word, and you,  laugh and continue on. 

The best friends of my in-laws are visiting today, a lunch invitation has been issued,  I have  politely declined, and  like most kindly elder grandparent like folks, they refuse to acknowledge my decline. What I want is of  course is of no consequence.  They insist.  No one insists like the kindly friends, all smiles good intentions and nothing but time. They just wear me down. Water boarding has nothing on the kindly good intentioned friends…

SHE has my purse, the large black hobo slouch bag looks ridiculous on her slight frame, she stands by the back door smiling. HE is standing before me laughing arms spread out open wide much like a shepherd herding sheep. Griff is already on the drive way probably in the car, ready to go, in the front seat, boys together, which means I will be in the back. Crap. Once you imagine it, and then see it, it is inevitable.

Shit.

There is no escape, my quiet afternoon alone I had lived and loved in my imagination will never come to be.  I hang my head in  defeat, and turn towards the door, paste on a smile, feel my heart beat morph into a bass line … my internal playlist,  Annie Lennox…Diva …Little Bird, the music now on instant play  without any electronic device necessary.   I have carved out  this safe place,  a refuge where I flee in a second when overwhelmed or defeated, or in this case both. My mental health safety mechanism on automatic….. “…give me the strength to lay this burden down down down…”

The day I arrived in Florida, the best friends had to leave Hilda’s bedside knowing the gravity of  her illness  because they had to rush to the death-bed of their own child, she dying of brain cancer in another state. My empathy swells fills and spills over. I think of what they must have felt,  knowing what we all knew,  knowing that they were leaving  a friend,  knowing they would never see her again.

lay this burden down,  lay  it down… lay it down

They arrived this morning, packed with  photo albums, memories, and grief.  Sitting,  hand holding, gathering wet tissues, keeping dry handy, I listened to them tell their tale, their immense loss, the details of  a death which so closely mirrored my own recent experience save one, Hilda was not my child.  They pause only slightly in the telling, the story starts with one, finishes with the other, they look up from pages wet, and I need only nod, it is enough,  the reassurance passes between us without words. Two deaths,  mere days apart, this was a burden beyond my depths. 

Lay it down, lay it down.. lay this burden down

I sit in the back seat next to the grieving mother, who directs her deaf husband on the finer points of street navigation, right turns to the restaurant, and parking lot navigation to avoid lefts on the way back,  uncomfortable in my position not because it is in the backseat, but because it is Hilda’s seat, her place, and I do not want to take it, I am not Hilda. Especially after… last night.

Last night as I washed dishes, iPod blasting to cover the sounds of the TV… I did not hear him behind me.

I felt his arms encircle mine, pinning them down his scruffy face over my shoulder, his smell of unkept teeth and body close…

I pull the buds out of my ears,

” Oh I love you so much, you take such good care of me…”

I raise my arms, break his trance, break his embrace, and turn around,  to face him.

” You have such lovely skin…” he reaches for my face.

” Whatthefuckever Griff!”,  I laugh it off. Pushing his hand away.

There is nothing more unwanted than the unwanted touch, nothing more offensive, nothing more violating than that of uninvited caress.

My personal boundaries violated, I put distance between us, tell him to go brush his teeth, and busy myself with kitchen trash.   

I do not know if for a moment he thought I was someone other than who I am, or  if he for the first time in 25 years thought it was appropriate to come up behind me and show “affection”, but enough is enough.

Today I had been to lunch, to the restaurant they all went together as couples, sat in her place, listened to their grief and loss and realized I am walking a fine line, needing to provide care, but not garner unwanted intimacy, needing to provide a sympathetic ear, but not take on the burdens of others, I must find a way to walk the line and at all costs  find my path to self-preservation. I know that it starts with reinforcing my physical boundaries, pushed to my limit, I have found where they lay  they will not be crossed again.  Nothing justifies unwanted contact, not memory loss, grief or a misguided sense of gratitude.

The trip back is mercifully short, the huge car door heavy, I hope they stay in the car, but alas, all are exiting.

shitcrapfuck

She starts,”So we want to come over and help you with the packing…”

He continues, “We helped them move in here you know, that wall unit comes apart in two pieces, but it’s still very heavy..”

He is 80 and I must outweigh him by at least 25 pounds, she a frail bird.

Are you shittn me? …. dad,  wondered where you were….

“I’m sure we can manage, I am not exactly a wall flower you know…besides we are packing only a few things, things that will go into his room at our house in Texas.”

“We insist”,  all together. ” When is the truck coming?”

“Gary will be arriving soon and getting the truck on Thursday, the we leave on Friday, I’ll be flying, and Gary and Griff will be driving.”

is it really true? will I actually be leaving?

Addios motherfuckers….dad!  these are nice folks please behave….

They leave at last,  please to have both fed us, and promised to return to help with the move.

“The sharp edge of a razor is difficult to pass over; thus the wise say the path to Salvation is hard.” 

 … ah excuse me Mr.  Maugham,  Dude, who invited you to this party? … not interested or looking for salvation,  only survival…

I was merely suggesting an appropriate title Madam.

Oh thats it a great title,  thanks William…it is William right?

Yes, and you are very welcome…

 I pick up my actual iPod, Annie awaits, she knows a thing or two about survival…

give me the strength to carry on

till I can lay this burden down,

give me the strength to lay it down.

Oh Annie  how did you ever get so clever?

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Everything is About to Change

“So really… you don’t need to get rid of anything, we just need to go through and make sure we take everything you want to… ” 

Its been two weeks, he is eager to get started with the packing to Texas….I know the space he will have, and although I want him to take all he wants, the contents of this trailer will not fit in his 10×12 bedroom. One the one hand, I realize  he will adjust better if he has his cherished belongings with him, but I am also only human; the thought of the authentic Amish built fireplace that plugs into the wall and starts with a simple push of a button being anywhere other than his room just sets my teeth on edge. 

I’m looking at Griff as he finishes his porridge and blueberries, scraping the bowl clean,  until nothing, not even a molecule of oatmeal is left in his bowl. I giggle, prideful,  he really seems to enjoy simple things, it never fails to give me great pause. But he still isn’t putting that piece of crap electric space heater dressed as Amish Furniture anywhere near my family room.

“So..what would you like to start with today?”

I try to direct his actions as much as I can. Yesterday he sorted through bags of clothing he had  filled, placed in the hall the  previous day, had forgotten he  packed and had gone through again, …twice.

Doctor, I wonder about this foggy thought process, is it grief or something else? I think Hilda was covering for him for a while, he does funny things sometimes… Is there a test you can do? Griff completed the computer driven assessment in less than 45 minutes. Came out to the car and said, “That was a complete waste of time.”  

Results in two weeks, actually on my 48th birthday. Happy Birthday!

“I need to go through that closet there,” he points to the small entry closet that holds coats, hats, shoes, and various brooms, both straw and nylon bristle, mops, because one can not have enough brooms or mops or swifter sweepers, or dustpans, or  different brand sponge mop head replacements  that once purchased in error, but heaven forbid can not just throw away…that would be wasteful.

I decide to leave him to it.

I tackle the shed, with its few hundred plastic shopping bags hung from hangers on a pole across the width of the place that has made me duck every single day, every single time I did the laundry. The pole is a closet pole, with not a single centimeter of space to add one more hanger on.

It is crammed full of hundreds of hangers of various manufacture, plastic freebies that come with clothes, dry cleaning wire, but without the cardboard  tube that keeps the pants from creasing, and tubular plastic, which I have learned are the “good” ones.  Even the broken tubulars are good, they are the ones that have been mended with duck tape. I swear this is all true.

From each of these hangers hangs a plastic logo embossed shopping bag, from either Target, Wal-Mart or Albertsons.                

 Inside these  the primary sacks are  the secondary sacks, hundreds of them, they dangle and sway these plastic grocery sacks, they block all light and air  from entering said shed, and every single day I have  had to bend and duck to get through this plastic gauntlet… 

I know I said we were not going to get rid of anything…but liar liar pants on fire…this shit is going to the bin pronto…

I take gleeful arm loads of plastic to the  recycle bin and just let it fly…

Why did they save them you ask?

These were saved  of course as they are the garbage bags.

“Never buy garbage bags, we use these, they are free!” 

 They are also much too small for a days worth of trash…..but thrift supersedes convenience here.

There is even a plastic grocery sack use it as a trash can holder under the kitchen sink MADE for  just such a purpose.  Totally true.

After lunch and closet and shed cleaning comes the scheduled appointment at the Social Security Office.

“Ready?” Griff picks out todays members only jacket, light blue, the man  isn’t dressed  without a jacket, totally old school.

I am ready for right hand turn man. I have taken my crackberry outside, found a good signal and downloaded directions and a map.

“Where are we going?”

“Social Security Office”

“Oh.”

And then, ” All clear, ….no one coming, ….you can go… all clear”

 white knuckle time again…shit just getthefuckoverit already…he is trying to be helpful.

Before we hit the end of the road he asks again, “Where are we going?”

“Social Security Office Griff,  you have an appointment”

“Oh Ok, ….do you have all the paperwork?”

“Yes, …. I have everything we need…. no biggie”

Then again as I go under the 19 north, “Ah we missed the road, need to turn around”…

“No…. the Social Security Office is just ahead on the right Griff…”

“Oh…. I thought we were going to the Doctors office…”

It actually happened six times in the span of less than ten miles, but I didn’t think writing it truthfully would be easy to believe.

In the span of less than 10 miles, less than 20  minutes, Griff  asks me 6 times where we are going. I answered him every time.

shitcrapfuck

I don’t need the results, I know already…another bad word has started to live right at the back of my mouth, dementia. I look up the details via crackberry. He doesn’t bathe as in if I don’t tell him he wont ever go shower, as in wholly crap I am not getting into the car unless he is forced into the shower and that hair better be wet and washed before you get out! The memory loss, can’t write, don’t even think about balancing a check book, the symptomatology is overwheling…I try not to hyperventalate as I am reading.  But I know…  I know… I know what this will mean to me and the way I live my life. Everything is about to change.

The day of the appointment  looms.

“Gary and Megan are coming today,”

“There coming today? I thought they were coming next week?”.

No buddy I have told you every day, three days til they come, two days until they come, one day,  he just doesn’t remember.

So off we go, to hear the news, the results. I know already, he knows everything about every English Monarch King or Queen, World War II, and fifties pop star, but can never tell me what he did the day before, who he just talked to on the phone, what day of the week it is, and if he brushed his teeth…

It’s official at the end of the visit, but  I have to ask for the results, neurology boy can answer his cell phone in an exam room with patient and family, rock back in his chair like he was playing X-Box, but can’t fucking read the chart to see we are waiting on test results…

” So his test results?” Shit bad girl, whatthefuckever. He doesn’t even meet my gaze.

Chicken Shit …Oh not now dad….

As I sit there I realize that its been 7 years to the day that my father died, another wonderful birthday surprise… thanks for that one big guy…

” Oh yes, well you know about his condition, he has Parkinson’s, and Shy Dragger syndrome, MSA,  but the results of the test were not good, he tested extremely poorly in all areas, it shows that he has base line dementia.”

Griff hears. Griff understands, he is quiet all the way to the car…

Tension is building my throat is dry, I have no saliva, I croak anyway…

” Ok assholes, its my birthday, let’s go do some shopping! I need some new shoes, and I think lunch out is on the menu cause I refuse to wash a dish today…..”

Griff laughs, “Oh I forgot its your Birthday!”

All is well,  for the moment.

Later,  much later when the trailer is quiet and we are washing dishes I ask Gary, ” So how do you think he did with the diagnosis?”

“He has forgotten about it all ready”

We get the Drum Stick, an evening ritual for Griff, bring it to the family room and hand it to Griff.

” I tell you,” he says between bites of the cone.” Of all the things wrong with me, that dementia is the worst.”

I look away, Gary says, ‘ By the time it really happens you’ll never know Dad.”

They laugh.

I can’t…. cause I will know, I will know, and I can not believe I will have to watch it happen,  and I know everything is about to change for Griff, and for me as well.

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Sidekick

The morning after, sitting in the hotel lobby, looking at the free breakfast buffet, a few steam trays, one of a yellow substance that holds a an unverified claim to be eggs,  another sausage patties the size of dinner plates, the last a glutenous mass which if my eyes can be believed is the southern charmer, grits.  There is also hot and cold cereal, some actually may be edible, although guaranteed to come complete with extra portions of high fructose corn syrup and artificial food flavoring,  I stick to the weak coffee and YIKES artificial creamer…truly a hardship.

I am in the midst of a complete overload the trailer,  my digs for the last 30 days had been in actuality, a giant mind numbing sensory deprivation tank.

……..free?  Nothings free

Ok Dad!…  Lets just say. the breakfast is …… its included with the room,  ok?  

 … sitting in the lobby looking at the included breakfast…watching.

Families are there, each clan hovered around  a single simple cocktail size table,  piles of plates,  bowls, and glasses jostling for precious tabletop real estate.  Too- small tables no accident, probably  furnished purposefully to insure one is not too comfortable, has to eat in haste and would never think another trip through the buffet line is worth the momentous effort of shifting all this dinnerware . 

Business travelers are there too, complete  and standard issue with coffee cups and blue tooth. Some stand, eating and talking to their invisible party loudly,  important business folks don’t see the need in walking away from crowds while conversing, no privacy needed. I think of peacocks crowing loudly……

The third group are conventioneers each sporting their red stringed  necklaces that display not only their names, but their destination and origination as well.  Tampa 2010….Mary from Idaho!  They too,  jostle for valuable real estate around micro tables.

Conversations clearly heard, it is a three ringed circus, the  family travelers around the edges, the fringes of the room,  the conventioneers taking up the bulk of the room,  the middle and the most as they having been here most of the week and have no polite social etiquette graces left, it is business and important work afterall each man for themselves. Finally the space is peppered throughly with the blue toothed talking,  single always travels alone serious experienced business traveler.

” Well they said we could wear jeans today..”

The speaker in a low-cut top, ta ta-s exposed, bulging over a too small bra like an over filled jello bowl.  Her red stringed necklace name badge hangs unmoving the only covering  between the world and her…hum business.  Her badge is still despite the jostling. It seems to be stuck to her breasts.  I watch intently wondering if and when a gesture will dislodge the plastic from her chest….

“I mean they did say we could wear jeans right?” The jello ta tas pleads with her tablemates.

Their silence is deafening.

She finishes, stands, and turns to take her tray to the trash, her high heels a size too small for her extra long toes which seek more real estate of their own off the front of her shoe…I think of raptor claws….

Jesus Christ…. do you call that dressed? 

Dad…. times change.

Is… that… her…. nickers?

The jello ta tas walks out of the lobby,  her black bowed g-string high,  proudly displayed  way above the waist band of her jeans.  The eye rolls commence as every other woman in the room  calls an audible, snorts, then exhales… loudly. Her nickers have become the center ring entertainment for the mornings circus.

Husbands look, wives watch  the husbands, children ever cautious to explosive situations, watch them both.  Blue tooth calls go unanswered. The silence reaches a feverish pitch as Miss Ta Tas her black bow nickers, and extra long toes vanish from sight.

Silence, but only for a nanosecond.

Too loud,  like cocktail party conversation where music is poorly selected, it comes flooding back…. again one  has to scream to be heard.  Overwhelming whining banter,   TV news casters glaring effervescent blue and red HD outfits complete with flag lapel pins, whitened teeth, and complexions,  blast their empty-headed opinions from over head,  and I start to  look for a remote…. please God, somebody …turn this shit off, won’t you all just shut the fuck up!

I see the food wasted, the full plates, cereal bowls, the half drunk orange juice milk and coffee, bagels taken and not eaten, a deluge of images and sounds leave me craving silence, sanity and an alka seztler. It is all way  too much, way too soon. I have a humanity hangover… plop plop fizz fizz.

I know where relief lies; Griffy needs pills, I needed comfortable silence, routine,  Sky Harbor and the trailer hold them both.

Deep breaths upon arrival, and a trip is planned, off to Honey Moon Island.  We walk the sandy shore that afternoon, searching for shells is mindless soothing and a surefire safer route to reenter society. So the day after Hilda’s passing we welcome the sun and long windy shore, walking, bending, searching and finding nothing more than broken shells and peace of mind.

It was then I realized we were no longer confined to the trailer, after all our patient no longer needed us, and by Monday morning all the guests had returned home, and Griffy and I started to think about getting out on our own.

Like out. Like get in the car, drive anywhere,  go anywhere,  out. 

Here where it gets tough though, I have to drive, Griffy can’t anymore.  You understand he will not leave the driving to me however. He will of course be telling me how to drive…..sort of an assistant, a sidekick, an old man Friday for everyday of the week.

Our first joint outing takes us to his already scheduled Dr’s appointment. He walks to the driver’s side ahead of me, I cringe I don’t want to have to say anything, my heart is loud as I watch him open the door, he turns and says,

“After you”,  I need not have worried, he was simply opening the door….collective swallow smile exhale.

The sounds starts emanating from the passenger seat just as I place the car in reverse.

“Oh…wait …Ok all clear now, you can go.. all clear.”

I look over at him,  the streets are  always clear, it’s before 9am, the cars and golf carts haven’t even woken up yet.

My hands grip the wheel a little tightly, I am afraid of getting on the freeway with my trusty sidekick Mr. safety …. but only slighty, he was after all trying to be helpful…

I realize I am depending upon him for directions, I ask,

” Ok are we heading north on 19 Griff?”

” I’ll tell…. you just go right up here…..”

Crap…is he going to narrate the entire trip,  feed me directions by the spoonful, or both?

” Griffy the address is on the 19, right?”

“Yes, just go up here, and take a right..”

” But Griff 19 is left…?”

“Left turns are too dangerous, just go to the light and turn right…”

” Griff I have been driving for over 30 years, left turns included, I am actually great at making a left turn, lets just take a straight route shall we?”

Silence, then,”Ok… whatever you want…”

Crap I can hear the hurt, but shitcrapfuck…. I am not spending the next three hours only making right turns when one left will do.

“Shall we go to lunch afterwards?”

“Oh that would be wonderful..”

Instant happiness.

“So he can have a Guinness then?” I ask the Dr. later.

“Yes he can, won’t hurt him a bit.”

Back in the car I place the car in reverse, he is smiling from the news of his now legal and totally authorized Guinness intake, then,

” Oh…wait …Ok all clear now, you can go.. all clear.”

White knuckles. Followed closly by shame, why does this bug the shit out of me…its insanity…get the fuck over it.

” Where shall we go for lunch Tonto?”

” Just go up here and take a right…..” I have no come back, I have no idea where we are going, I am at the mercy of right hand turn man.

He directs me  to a local shopping center  naturally taking only right turns  and I see the sign for a Pub.

We are silent as we park, no need to talk,  we walk in,  take a booth, waitress she smiles and asks, my reply

” Two Guinness drafts please,  one for me,  and one for my trusty right turn only sidekick here”,   she doesn’t get it, but we do and we laugh.

The Doc was right  it didn’t hurt a bit.

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Filed under Death, Family, Griff, Hilda, Hospice, Life, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Story Telling, True Life, Writing