Lost in Allemagne

Whatever it may be, it is what it is.  I no longer have a mind, or semilogical thought set.

Where is the guy who can spin off cantankerous cacophonies of kaka like it’s nobody’s business?

A new list of names to add to the list of names of people to thank for being people.

Can I be too tired right now to name them?

Where is the amateur professional amateur when I need him to stand in my stead and mount the steed like an Android tablet that suddenly displays a need to find the mount drive named something like /mnt/, which amounts to mountains of rubble and gibberish rubbish to the noncomputersavvy.  Savvy?

Of course not.

My father is dying, dying, dying and I’m past the point of pain, pretending to pretend my father is there in some form of his old capacity while pretending in pretense, past tense, tension (the hyper kind), that he’s like a newborn child all over again, like adopting an autistic child with no clue which clues to the child’s nonclues indicates the child’s needs without pretending.

Is my father clueless or stubborn?  Is he ignoring or is he tired?

He never liked dwelling on discussions about his health, his PRIVATE health, with strangers.

But he loved talking.

Now he grunts, coughing out sounds we interpret as “yes” or “no” to the best of our ability until he indicates we were wrong.

He is weak, getting weaker, never the weakest this week.  Weebles wobble but they don’t fall down.

To have these moments with him in his time of indiscernable thought patterns.

To read much, little or nothing in his eyes, from when he chooses to look back with a blank stare.

Not even a smile.

Is it worth writing about the shriveled hands, the sunken cheeks and hollowed-out eye sockets?

When the family chooses to put in the feeding tube, the PEG line, these are the consequences we get to face.

It is up to me to serve as a warning to the rest of you — resist the temptation.

I don’t want the last memories of my father to be these moments of diminished capacity, well beyond the twilight zone of believability.

I believe I have no choice.

Suffer the insufferable.

Go with the flow.  It’s all relative — many have suffered worst fates with friends and family.

And yet, not so.

Time to revise my living will — there will be no PEG line for me, no stretching my life into wide-eyed stares with no productive, contributory communication to give back.

Let me die in strength.

Let me fight the good fight while I have the capacity to say no.

While I have the fingers to type or, at the very least, the ability to dictate via brain probes.

Something…anything but this.

I am beyond crying.

I am tired of being tired of being tired.

If my thoughts aren’t worth reading, plop me in a wheelchair and push me into the woods.

That’s the joy of having no children.

Let me feed wildlife with my set of states of energy in entropic flux.

Where labels have no meaning to an ecosystem designed to eat the weak and the dying in an effort to convert energy into the ebb and flow of species sets of states of energy in regenerative reproductive mode.

Auf wiedersehen, Vati!

More People to Thank…

Thanks to Judy, Robin, Shawn, Amy, Lisa W, Marla, Carol, Ethan, Heather, Courtney (did I already thank Jeff Gulley and Andy of Ambulance Service of Bristol?); Food City, Marie; Miss Bea’s; Pal’s; Amis Mill Eatery, Tanima; El Paraiso, Lucy; Big Lots, Juanita, Lana, Tori; Advance Auto, Aryonna; Healing Grounds coffee shop, Brandy (barista); Zoomerz 69; Cupboard/BP; VA/CLC, Heidi; Col. Heights Presbyterian church staff and parishioners, neighbours providing food/emotional support; MassMutual, Christine; more to follow…

Chemistry… “Live it. Love it. Wear it.”

While the world stares blankly at the U.S. arguments about national “universal” healthcare, I delve into the healthcare provided to one person: my father.

I observe and listen.

I take the advice of medical pros like Dr. Little and delve more deeply into the mixture of medications poured down my father’s throat on the advice and scripts of his doctors.

Drugs like pyridostigmine, prednisone, and paroxetine given all at once.

What if the medications are causing side effects that doctors are treating as symptoms, prescribing more medication to treat the symptomlike side effects that causes more side effects which look like new symptoms, etc.?  A vitreous cycle, wouldn’t you say?

You see where I’m going with, don’t you?

For the sake of keeping this civil, let’s call it “human nature.”

What is that phrase I tend to forget in moments like this…?

To err on the side of caution is good human medicine, to forgive Divine for bad acting is unnatural?

Something like that.

More like to wade Kendrick Creek during one’s spring break is fun, to build a bridge on Gibson Mill Road in summerlike heat is exhausting.

I just hope we can get Dad back before it’s too late.

If any of him is still there…sigh…kinda like USA soccer/futbol, here the next moment, gone in an Olympian tie the next…

“Customer Care – Incident Created”

In this day and age of multiple personality disorder — that is, our combination of official government identifications (driver’s licence, voter ID card, medical ID card, etc.) and online personalities (email address, social media identities (real and/or imagined)), etc.) — do we know who we are when we no longer know who we are?

While we work with medical professionals in private practice and public hospitals (a thanks to the folks at Holston Valley Medican Center and HealthSouth Rehab Hospital) to get my father on a track where he can have an acceptable, if not good/great, quality of life considering his conditions, my family works in the background to sort out my father’s multiple personalities.

For instance, my father kept Post-It notes of some of the usernames and passwords associated with his online personalities but not all of them, especially the most important ones.

His official government identification cards are up-to-date and don’t need fixin’, as we say around here.

However, working through the bureaucracy of getting help when help is needed most — a medical emergency — is just short of a nightmare for those of us able to sort through the payment options and insurance coverages that are written to accommodate as many diagnoses as are currently available in legible written form by the medical profession.

Woe be to those whose family members have symptoms that can’t readily be grouped into an official syndrome or disease.

I could wax and wane through many a lighted Moon cycle on the current state of the modern medical scientific community but suffice it to say that any view 1000 years hence marks this time, like all looks back into history, as rather barbaric, archaic and borderline misinformed.

Unfortunately, I don’t have a fast-forward button to take my father into a future where his conditions are rather curable by enlightened practitioners.

I have to deal with the training and knowledge at hand, such that it is.

Thank goodness, compassion, care and comfort are rather universal — human touch, in other words, is good for most of us, in one form or another.

My father responds well to communication with fellow members of his gender.  Guy-to-guy gatherings are his thing and he perks up when men ask him to perform manly tasks.

He does not want to be babied or treated weakly by women.

Otherwise, all is well that progresses well.

Me, I don’t mind attention by females in medical professional roles but I’ve noticed my father responds best when treated by men — doctors, nurses, therapists and specialists.

Probably a generational thing as well as social training — I am a child of the 1960s/1970s whereas my father is a child of the pre/during-WWII era, with other subcultural nuances thrown in for good measure.

Something the medical community should take into consideration when vocalising concerns about getting more people involved in seeking certification for jobs/roles in the medical field.

Healing is not just application of chemical treatments — treating people like desired monoculture grass lawns — it’s also understanding where the patient is coming from and wants to be treated.

The online world is no different.  How do we create a system so that when a person’s ability to recall important online identity tags diminishes, family members can step in and help without having to figure out the unique character set combinations the person’s brain created to protect online personalities, especially where bill payment and medical information access is critical to keeping the person healthy and out of financial trouble?

People to thank with more to follow: Benjamin, Amanda, Tina, Martha, Mary, Sue, Jennifer, Joyce, Glenda, Brenda…

Update on Dad

 A bit of harsh reality, or at least reality, in any case.  Anne and I requested an update on Dad and the case manager was gracious enough to show us Dad’s whole chart this morning.

 Basically, considering Dad’s condition (even though there’s not a diagnosis yet), the goal is to get Dad home (or to an assisted living facility) with extended rehab, if available, but he’s always going to need supervision and assistance 24 hours a day at this point.  He can groom himself and sit on the toilet but he needs help getting in/out of bed and going anywhere.  They estimate that Dad’ll need a wheelchair from now on — Dad has taken pretty well to the wheelchair but still wants to pull the feeding tube out and take off his medical wristbands.

Back to the rehab hospital to meet with Mom and the doctor, hopefully.

Also, the person across the hall, who looks like he has no mobility, keeps shouting, “Help!  I want to die and they won’t let me!” which not only depresses Dad but all the rest of us, too.

How often should a nurse tell a patient, “I can be here 24 hours a day”?

Seven billion personalities wandering the space around Earth’s core, all of us with needs, wants, ideas, plans, hopes, sorrows…

In this mortal coil that resembles strands of DNA as much as anything else, meaning — possibly, probably — that life itself is life itself, we are who we are when we are where we are how we are, do we see or hear ourselves making impacts on those around us, changing the course of needs, wants, ideas, plans, hopes, and/or sorrows in the moment?

Our philosophies do not matter.

Life is entropy, order and chaos, sets of states of energy bumping into each other, sometimes self-consciously, seeking reproduction in various disguises, forms, performances, rituals, randomness…

How many days are left before this storyline picks up the tale of the invisible group mockingly, seriously, joyously, sadly called the Committee?

Are you prepared to meet the super genius behind the veiled enclosure where decisions are made in both individual/committee conscious intent and the general flow of the [sub/non/un]conscious crowded moment?

We are constantly influencing the moment, breathing in and out, exchanging atoms and molecules in the space around us, exchanging ideas/memes in the social network between us…

Beliefs, strengths and other words of ancient origin compete, no winners intended or implied.

So it is I am this skin-wrapped self, this temporary visage, passing through this time we share together, gathering ideas like a quilter gathers pieces of cloth, building a layer of warm comfort and pleasing design, traditional and contemporary at the same time.

We have but one moment in which to live, one moment to make a difference, and then the next moment arrives upon which the previous moment’s opportunities, missed or achieved, present options.

Showing my father a future in which he wants to live and improve his bodily conditions.

Working with professional medical workers to increase the strength of Dad’s support network.

Asking friends to vocalise their love and fondness of and for my father.

Remembering that every word, every phrase, every expressed thought, makes a world of difference in my father’s intensive therapy sessions and the down times in-between.

Ever the optimist, helping my father, a Life Member of the Optimist Club, recall his oft-cited recital of the Optimist Creed:

Promise Yourself …

  • To be so strong that nothing can disturb your peace of mind.
  • To talk health, happiness and prosperity to every person you meet.
  • To make all your friends feel that there is something in them.
  • To look at the sunny side of everything and make your optimism come true.
  • To think only of the best, to work only for the best, and to expect only the best.
  • To be just as enthusiastic about the success of others as you are about your own.
  • To forget the mistakes of the past and press on to the greater achievements of the future.
  • To wear a cheerful countenance at all times and give every living creature you meet a smile.
  • To give so much time to the improvement of yourself that you have no time to criticize others.
  • To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.

Modal forms of odes on the theme of paterfamilias love

While my sister works with the hospital staff to provide an appropriate level of familiar homestyle comfort and care, including a bath and shave, I work with my mother at home to give her a sense of normalcy.

Raking the yard.  Bagging leaves.  Moving a car from one driveway to the other to make room for out-of-town visitors.

Taking the rubbish and recycling bins to the curb and rolling them back to the house after the sanitation crew swings by.

Reading the newspaper while seated in my father’s captain’s chair. Drinking coffee that Mom brewed.  Eating a sausage biscuit she bought.

Scanning through dozens of paper and web pages on symptoms associated with syndromes like ALS.

Remembering other motorsports venues and events my father and I attended… sitting in turn 4 of the Bristol Motor Speedway, watching Richard Petty’s battered car go around the half-mile track for the last time; watching IndyCars spin around Charlotte Motor Speedway like toy models on a Hot Wheels track; walking around the MidOhio race course, watching a variety of cars race through hairpin turns, admiring TR3s and other cars of Dad’s youth/young adulthood; local dirt/asphalt/concrete tracks from Kingsport to Bulls Gap to SW Virginia to south Florida and points in-between the points where drivers and owners make points.

My sister called.  Dad is getting more and more frustrated in his hospital room, either unable to speak or refusing to, using hand and other body gestures to describe what he wants RIGHT NOW.

Time to walk away from the computer and attend to Dad’s needs.

Family first — the rest of the world can and will wait.

An Attitude of Gratitude

More thanks:

Bonnie and Warren in ER at HVMC; Glenn, registration; Connie, nurse practitioner; Steve, hospital security; Adel, MD; Haley, RN; Sharon, liaison; Gloria, PCT; Amy, RN; Lilli, RN; Elabassi, MD; Nina M, care team; Missy and Luanne; Halie, RN; Sammi Jo, PCT…

I’m shooting for calling my Dad’s symptoms Hill Syndrome, setting a new standard in grouping symptoms under a convenient meme.

= = = = =

New medical term of the day, probably unrelated:

Sjögren’s syndrome

In every life a little reign must fall…

Quality versus quantity of life…how do we qualify the ideas in that statement?

My father has been both the idol and the rival in my life.  I idolised my father — admiring his ability to make strong, manly decisions and not question what might have been.  I competed against him in mental games and intellectual pursuits.

My father has also been my friend, sharing interests such as motorsports (NASCAR, IndyCar, F1), balsa airplane models, classical music and spy novels.

In this stage of our relationship together, we approach the statement “quality versus quantity of life.”

I am not my father’s sole friend and vice versa.

We have age-appropriate relationships with our peers, my father having collected more friends through his life that is 27 years longer.

My father’s level of daily health has exhibited drastic changes in the last few months, indicating a downward trend that, combined with a new diagnosis, implies a decline with less change for improvement.

We approach a state of being labeled the “locked-in syndrome.”

Over the past few days, I’ve slowly approached the completed reading of a book titled “An Optimist’s Tour of the Future” which explains in layperson’s terms the current state of the state-of-the art, including genetic life extension research.

Looking at my father, a professor no longer able to profess or postulate, I wonder, will he accept his new role as a leader in the field of patient-based testing, putting the latest control assistive technology, such as NeuroSwitch, through critical pacing?

How does a locked-in brain use the power of seven, bunching shortterm/temporary memory lists of seven groups [(of seven groups of) of seven groups of…] seven items, to develop its image of the future?

Finally, how does that impact quality versus quantity of life for my father’s relationship with his buddies, his wife, his daughter, his grandchildren and, last but not least, me?

As my father’s reign over the family appears to end, what legacy of hope does my father want to give those whose lives are no longer attached to their heady days of physical activity and demonstrative speaking/arm-waving skills?

Does he have the desire to learn new skills in order to achieve something he never thought or never knew possible, operating electromechanical devices through the tiniest of nerve impulses to add data for improving the next generation of prosthetic devices that may one day lead to a brain of our species residing in a cybernetic/android “suit”?