catsaway in Hospital with Parkinson’s (again)

VGH March 24 - April 20, 2016

Well I was… home now, where I am regaining my equilibrium (sort of) after a third-world-tarmac landing: floridly bruised knees, non-concussed wall-banged head. I am resuming my connectedness to the digital world (after the barest of Internet for 19 + 27 days)

The night I was admitted for a second time (March 24, 2016), after the emptying of an agonizing bladder-bursting litre of retained urine, and a second litre from a subsequent catheter ordered by the Doctor (the ER nurse had called me manipulative for having begged for the 2^nd release) lying in frozen sweat, my t-shirt plastered to my body, I instructed* the ER care workers to just cut it off. I insisted it wasn’t worth the effort to do otherwise… it was a plain white cotton t-shirt, 21 of which I would come to own by the end of my 2^nd admittance (having quickly learned to reject the convenience of their tender underarm grating polyester, naked butt exposing hospital gowns, as I had previously learned to reject the seduction of their heated flannel sheets: a few minutes of steamy bliss rapidly descending into hours of clammy sweating in the frozen AC air).

                                                                               

*I would learn, eventually, that even polite and respectful instruction as how best to meet my specific pragmatic, not obviously-medical needs, was more often than not, unwelcome and resented by most hospital staff. For pain I needed warmth and mobility not drugs. And western Hospital treatment excludes (mostly) the Touchy Feely. I would experience one truly extraordinary exception to that rule …

Though the ER care worker cut off the t-shirt with neither argument nor resentment, the Higher-Ups would later discharge me, declaring me “a poor candidate for in-patient care, ill-suited for any Parkinson’s rehab program as I lacked goals and determiniation”! And this for the crime of having made suggestions and asked questions about how my return home would be prepared for – plus, perhaps, a few harmless eccentricities which I’ll get to later…(hint: think overhead-spot-lit in the otherwise-dark-ward topless, floppy-adult-diaper clad middle of the night post pee celebrations of the joy of release from the frozen rigid immobility imposed by the freezing AC – not Parkinson’s “freezing”, as my current super-hero community nurse advised me to distinguish).

catsaway in PurdATORy : My Year of Living Dementedly

''Fu ñëp di say ku sayul yaa dof '': 

Where everyone is in convulsive fits of madness, s/he who remains calm, it is s/he who is the crazy person.

Là où tout le monde est agité de convulsions démentielles, celui qui demeure calme, c'est celui-là le fou.

     - a Senegalese proverb, translated, rather literally, from the Wolof original.

To Mark (usage of the verb “To Celebrate” would be utterly misleading) my approaching One Year “Anniversary” (again, not quite the right designation) of staying alive and staying sane in a Residential Care Facility*, I am posting NOW (however chronologically incorrect: begun in advance of the true date and posted months afterwards), my New Year's Resolution. 

I would otherwise have been obliged to look through a disorderly assortment of my documents and other source materials in order to ascertain the exact date I was:

exiled from my home;

exiled from my home;

made to bid farewell to Taxi Muus (my most faithful furry companion of 17years);

made to bid farewell to Taxi Muus (my most faithful furry companion of 17years);

and permitted to displace only the most necessary personal belongings to my new so-called home, my first Residential Care Facility) for the purpose of making my New Year’s Resolution.

I hereby do Solemnly Declare that:

Should I survive this épreuve (Actually ---  I am struggling to find the most appropriate and evocative WORD with which to label this “______” : this “Divine Punishment”; this “senseless suffering”; this “quest”; this “exercise in character-building”; this “threat” to my return to anything that resembles that which I will recognize as my life)...

                                            

Should I escape PurdATORy**:

                                                         

I will tell my Truth and Nothing but This True Story of 

                                                                
Being Me in the wrong place for a long time…

_______
*

Vancouver Coastal Health - Residential Care: We provide publicly-subsidized residential care through our home and community[A1]  care services. idential care is provided to people who have complex care needs, can no longer remain safely in their own home, and require 24-hour nursing care in a supervised and secure environment. Formerly known as Nursing Homes.

**
The Purdy Residence is situated in the Purdy Pavilion on the beautiful campus of UBC next to the UBC Hospital. The 200 extended care residents live on the first, seco nd, third and fourth floors. We are operated by Vancouver Coastal Health, licensed under the Community Care Facilities Act and accredited by the Canadian Hospital Association. This location offers both residents and visitors a number of amenities unique to its setting, including a wealth of volunteers from the University of British Columbia (UBC) student population.

PurdATORy.... to me

                                          

catsaway ... dancing with Parkinson's

Disclaimer: these videos were made to show my doctors what I can do as a person living with Parkinson’s, not as a dancer or vidéographe… (sound isnt necessary)

As a former media artist, infrequent, malgré moi, blogger, and general perfectionist when it comes to creation, it breaks my heart (add this to my list of recent broken-heartednesses) to put out into the world unedited video with no thought to “set” or “costume” design.

I’m going to attempt to make one asap when I will be in good shape and in the presence of my one private care aide (they are called companions in official parlance, but it doesn’t do justice to their hard work) who can film and transfer the videos to YouTube… (I’m not equipped to do it...).

Dancing

Aug. 21, 2017

Dancing for my Doctors

Sept. 5, 2017
Dancing on 4 hours of sleep before 2 back-to-back doctor's appointments... (that`s a big day for me) I think they might`ve been impressed.

>> More dancing
Sept. 9, 2017
not so tired... better dancing


Upper body exercises (in spite of dyskinesia)
Sept. 20, 2017

Dancing (1st 4 minutes :some of my habitual prepartion exercises before getting up if i have been lying down too long  - more than 30 mins. The 
morning routine begins with baby powder applied to my butt to unstick me from the horrible soaker pad one must have on the sheets on the bed to protect the manditory rubber mattress cover from that which the "pad" - adult diaper - can not)
Sept. 20. 2017

Dancing after even less sleep...
Sept. 28, 2017

Gowns - Meanwhile, Miss M

 catsaway, again: A Different Residential Care Facility

MORNING:

Mrs. Harold B. (“M”): widowed with children, grandchildren, great grandchildren;

Miss “M”; my Alzheimer-afflicted roommate

had, at 8:45 this morning, just flushed her diaper. 

She then exited our bathroom in a fancy "wrap-around” dress. She had fashioned the “dress” out of two snapless hospital gowns tied at rakish angles: her 80+ years’ old flesh exposed down one side

(reminiscent of an Oscar dress that provoked scandal for its sideless cut’s ample dependence on fashion tape)

from arm pit (and barest of dangling side-boob) to ankle.

Her shoes: black patent little girl dress-up pumps adorned with dainty black plastic bows fixed to the exterior of the pumps at the very spot in the interior of which the corns on her This little piggy had none toes (both feet) were abraded by her glossy white polyester ankle socks.

Her jewellery: a diamond and white gold bangle and single strand of pearls (with an overlay of jangling costume gold chains and tropical-tourist-ware carved coconut bracelets).

As I struggled, in vain, just one last time to draw closed and tie Miss M's "gown", I was flashbacked to November 8^th 2009:

The Sunday morning, when my mother got up; baked an apple pie; put a whole chicken in the oven to roast; went into her bedroom to dress for Sunday Mass;

And died: sitting beside me on her bed… Sensing her decreasing strength and stamina the previous few days, a month after her release from the ICU where she had been treated for bi-lateral pneumonia, I, who generally avoided her noisy morning kitchen, 
had been shadowing her movements:

breathing shallowed; rhythmed to her failing respiration…

                                                                                                                                                                                   

In that moment, I cursed my newly diagnosed Parkinson's, as I struggled, in vain, to realign the bodice of my mother’s nightgown

(made of a dusky fleshtone polyester, splattered with floweresque medallions of faux-chiffon wafting across the approaching opaque much-washed gown and lined by a simple sleeveless-shift in the same shade of flesh)

her nightgown (or its kin) had swaddled her widowhood: as with her nightly Waterford crystal vodka dose dangling from her sleeping fist, she had snored, alone, through 16 years of CBC’s nightly newscast, The National.

As I struggled, in vain, to cover her startlingly youthful-looking left breast; to pull the gown up to its proper place, now weighed down by her 95-pound, 83-year old body; I was yelling despairing unheard assurances of the imminent arrival of the ambulance into my mother's deaf dying ears.

       -         

Meanwhile, Miss M continued to fuss over final embellishments to her gown(s).     

       -                                                                                                              

Though reluctant to leave her (a hesitance that shadowed me, as I did her, throughout the morning) my failure to resolve the lapse of her gaping ensemble necessitated the intervention of a Registered Care Aid (no one would answer the call bell, especially at busy breakfast time, especially my call bell during my self-proclaimed hours of independence.)

So I went in search of aid...

and returned:

The bathroom was flooded.

Half the room was flooded.

Miss M’s gown: discarded and soaking up toilet water in the middle of the room.

Miss. M. (disrobed)

hHad, it would seem, just exited our room:

Naked.

catsaway in Hospital with Parkinson’s: VGH Neurology Ward Jan. Xth – Feb. Yth, 2016

My 1^st admittance: Jan 2016. VGH Neurology. 19 days

Admitted due to abdominal cramping with sufficient frequency to interfere with independent living (ie not always being able to get out of bed on my own). 19 days for intermittent constipation!

The night of my 1^st admittance -  after the old-hippy Porter, in her faux Zonda Nellis garb, had wheeled my gurney from the ER: through the hospital’s in the dead of night labyrinth; up elevators emptied of urgency; mounting floors of which I lost count as she told me she has been doing this job for 37 years going home after each night shift to raise her 3 kids -  after she had passed me off to two nurses on the Neurological Ward, still prone, I was delivered through a sporadically lit Souk of curtained bed stalls. Our passage wove its way deep into the furthest nook of the irregular polygonal room. As each passed curtain drafted, patients stirred and shivered on railed-in hospital beds, swaddled in steamed Mother Teresa-blue lined on white-sari flannel sheets.

It was 2am by the time the IV saline had dripped me to sleep.

My first neighbour was an elderly British-born, Oak Bay Victoria-residing, retired professor of some obscure high tech specialized domain: something high tech and specialized to do with crystals. Throughout the day we enjoyed a polite discourse on various subjects suitable to our circumstances.

Under night’s covers, his nurse inserted a catheter tube up his urethra. His groans of (one would assume) pain were exactly what one would assume were groans of erotic pleasure.

Unexpectedly aroused by the phlegmish tumescence of an 80+ year old man, I slipped into vivid dreams of erotic highlights of my own…

Next morning, he was gone.

And I was moved.                                                        

                                    

After one night alone in my new semi-private curtain–delimited territory, my new neighbour arrived, after midnight, in a haze of burlesque. Marilyn: who, with her whisky-gravelled voice, tottering high heeled swagger, and dishevelled glam contour (without glasses with which to pierce the ambience of her entrance, my eyes grasped but a few precise details) Marilyn was, I surmised, transgender or in drag.

After a restless raucous night demanding her bottle (apparently lost along with one high-heeled stiletto) she simmered down to kitteny whimpers begging breathlessly for someone’s aid… after a while, I began ringing the nurse call bell for Marilyn (who, I had realized by then, was in fact a woman).

The Acute Neurology Ward was not her place: in the morning she was gone.

After Marilyn, an elderly Asian lady, spoon-cocooned in a Patient Ceiling Lift Sling, was finely draped onto the bed in the other half of our semi—private room.

Draped from her antiquated ivory, crucified-Jesus crossed feet, her archer-bow calves unfurled drawing out her long since sexless entrejambes.

Her pelvis cradle swayed wafted settled;

Her arms: with hands mudra-stilled in the gowned, nearly-bald nest of her lap; parentheses of her supine self.

Until finally her seahorse spine (hinged to the skull encasing her neurologically compromised brain) unfurled to plunk her head on the hard-stuffed vinyl pillow with its coarse fabric, yellow pillow slip…

Her family sat in muted vigil over the mama who would soon depart: Parkinson’s, Dementia, and finally, a Stroke would carry off her venerable being. In their silence, the daughter: gracious, reverent and too damned apologetic; praised my forbearance amidst their soundless cacophony of grief.

We would meet again, that Daughter and I. And her past beauty of spirit would constrain my righteous anger at a mismanaged Hospital Discharge Plan and her role, as a hospital employee, in its maladministration. (I would come to learn that such plans imposed upon me by hospital teams of expert social workers were never what I needed: either the team didn’t allow for my greater knowledge of my own apartment and the particularities and restrictions of its management or else we all failed to recognize my hesitation to return home as fear of returning to what had become a highly unstable, threatening, traumatizing space; refuge from which, for a time, could only be found in hospital. Eventually, inevitably, the hospital would become another site of threat and neglect, abandonment and loss…

"cats so, so far away: (dec 14th 2016)

"cats so, so far away: there, where at night Dr F (retired) coats himself with, then eats, his own poo …"

And then in the morning, _this_ morning, Dr F (retired) attempts to loot my gluten-free oatmeal made with lactose-free milk.

Standing beside the microwave, I look up just as he is cresting the wave of his blue terry towel bib which, in his tsunami-haste, has dropped to his feet on the abruptly vacated Residential Care Facility* dining room floor (the barriers of furniture and people having retreated in the drawback of his determination).

His momentum breaks at my side, his agitated face in profile, Dr F (retired) reaches down to the seat of my wheel chair on which I’d placed my breakfast, and scavenges my oatmeal.

A tug-of-war ensues: each of us clinging with both hands to the plate on which rests the bowl of (one would think) Lifesaving oatmeal.

S., one if the care-aids, intervenes and rescues my cereal just as pink-faced Dr F (retired) was gaining the upper-hand; just as my blue $2-West-Jet-blanket “sarong” was beginning to slip off my waist.

So, so far away …

-----

*how I got here is a traumatic story for later but it is generally a great place… so a traumatic chapter with a happy ending. It could have been so, so much worse.

Parkinson's: Within my dark

Within my dark

Immense is a big word

              especially as an adjective of desire.

Stroked by your magic wand

             

For the first time in months

              you have woken me to WANT

From within my dark

For the first time in months        

I am going to choose life.