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…

My Kryptonite

When I was a program manager for a large computer equipment manufacturer, I dealt with the global supply chain on a daily basis.  I worked with people and machines.  We weren’t interested in creating headlines for headlines’ sake.  We just wanted to accomplish the tasks we assigned one another in our give-and-take of getting products and services to our internal and external customers.

Conspiracy theories were for the quacks parading and masquerading as popular newspaper columnists, radio/TV talk show hosts and pulpit pounders.

I never met a spy or an industrial espionage mole.

The flow of information across business borders (which sometimes crossed political borders) was the natural course of action of human endeavour.

In other words, I grew into a member of the global economy.  I was not tied to any one gender, race, creed, religion, country or local/regional ideology.

I don’t have turf to protect or children to instill a particular belief set into.

I am, was, and will be a proponent of Earth-based lifeforms because I was born here first.

However, I look forward to the day when lifeforms can consciously/intellectually say that our solar system (and eons from now, our galaxy) is their natural birthplace.

At least, that is the storyline told in this blog, mixing in realism and tall tales to give us a perspective many of us have envisioned from our foggy toddlerhood.

Keeping in mind that my weak side — my Kryptonite, so to speak — is the medical/emotional details of family life that distract me from telling our story in the view of a visitor 1000 years from now…

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.