Alzheimer’s has been described by many as a disease where affected loved ones deteriorate and “slip away” over time.  In my own family, I’ve watched my Maternal Unit follow the only man she’s ever loved, as he drifts from our sight and she pulls further and further away.

Especially over the last 39 days.

Today marks day #39 at the hospital.  The parking lot crew smiles when they see me drive up now, because they know me.  The staff of the internationally recognized coffee stand (located on the plaza level) happily recite my coffee and tea choices to me when I approach the cash register, because they know me.  The chair that I occupy next to my Maternal Unit, where I try to talk to her about life outside of the hospital and the end-of-life issues before us, might as well be empty, because she does not know me.

It’s not that she has been diagnosed with Alzheimer’s disease, too – but she is suffering from the effects, nonetheless.  The shrapnel of Alzheimer’s has wounded everyone in proximity of this particular patient, especially the one closest to him: his wife of nearly 53 years.

When the diagnosis was first delivered, the information was kept secret from everyone, including the inner circle of my family.  I knew, but only because I ran across a couple of receipts for prescriptions like Aricept; articles about vitamin supplements for memory; and the benefits of coenzyme Q10 oil.  You can call me a lot of things, but ‘curious’ and ‘voracious researcher’ better show up in the top five.  I’m an observer with access to the internet.  I will suss you out.

Over time, it was decided that a handful of people needed to be “in the know” to protect slips of the lip in conversation or the inability to recall people’s names (it is still amazing to me that nobody complains if you call them “Duchess” or “Champ” instead of their given name).  For a long time, the subterfuge methods were successful and no one was the wiser.

Then, Alzheimer’s made incoming information and outside stimuli too painful for the brain and the Great Patriarch would shut his eyes, locking everyone and everything out, for over a year now.  People went to tremendous lengths to get a response, but time eventually made all efforts futile.  The beautiful blue windows to his soul were closed.

I don’t know about you, but I love the brain.  The brain is an interesting and complex computer that has more switches than just memory, personality and speech – it also supplies the information that tells the body to swallow, eliminate waste and breathe.  The sticky, noxious material that accompanies Alzheimer’s eventually blankets everything, turning off all critical data centers and the body can no longer function without it.  It is an amazing bit of machinery, but when it starts to break down there are no mechanics (no disrespect to those in the field of neurology) who can fix it.

My Maternal Unit, despite being a brilliant woman with a fabulously analytical mind (perhaps too much so, hence my lifelong torturing of every little thing that I said or did) – cannot process the information of what a disease like Alzheimer’s does to the brain and body and just believes that everything can be fixed.  Lungs not working?  That’s what a ventilator is for.  Bladder needs assistance?  Bring on the Foley Catheter.  Inability to swallow?  Install the PEG/abdominal feeding tube.  Three pints of water building up in the thoracic area?  Well, that is why the good people at CareFusion created the PleurX catheter.  No longer able to locate veins to relocate the IV hydration/medication needles?  Ptth: I’ll take a Picc line for $1500, Alex!  And failing kidneys are just going to need dialysis, don’t you know.

I understand that there are many people who are going to side with my Maternal Unit in all of this and know that I love and respect her wishes and stand by to support her as best I can, choosing not to fight or argue (my lips are bruised from biting and pursing to maintain silence).  But my own analytical brain (that’s right, the apple lies close to the tree, whether it grew there or not) is greatly troubled by the decisions being made daily.

Since no Advanced Directive was created, that wonderful document that spells out a person’s exact wishes for their medical care, people are left to stand around and speculate.  Man.  I hate that.

Even though the man lying in the hospital bed no longer knows us, I knew him:

A man who devoured life and refused to eat any meal if it was sub-par, seeking out the freshest and best of all foods.

A man whose every day was filled with a desire for all that the mind could hold, whether creative or cerebral, to be held up for discussion and debate.

A man who could not face a day without extensive time in a gym, pushing his body to limits ordinary men would be fearful of.

A man who spent his entire life, seeking relief from any kind of pain or chaos.

A man who said he wanted to “die at his desk” with a pencil in his hand.  The businessman’s version of the cowboy’s dying with his “boots on.”

The doctor in charge told my Maternal Unit that the Great Patriarch was a fighter and that they had many conversations over the years about aggressive intervention, in regards to the body, and therefore he believes the man would have wanted this.  I believe the man who spoke of aggressive intervention was the man we all knew, a pillar of strength and positive thinking – a man who believed in hope, against hope.  By the same token, were he to have been educated with all that I know in my tireless research of Alzheimer’s and the effects on the body — I don’t know that the answer would be what everyone assumes.

But, what do I know?

“I know three people who have got better after a brain tumour. I haven’t heard of anyone who’s got better from Alzheimer’s.” ~ Terry Pratchett

“In Alzheimer’s [disease] the mind dies first: Names, dates, places – the interior scrapbook of an entire life fades into mists of non-recognition.” ~ Matt Clark