A Train to Somewhere/Early Signs of Trouble Ahead

[Two posts here,as the first was rather short]

Just back from walking through a steady, light drizzle across the road to the mailbox where I found nothing much of interest besides the latest Smithsonian, one of the magazines we both enjoyed, I for the history, Carol for the science.

It seems as though the sun has only made token appearances for the past couple of weeks, just enough to remind us of its existence.  Otherwise, we are enduring gloomy, rainy weather, only brightened by the fall colors of the leaves that will before long be brown and on the ground. 

It is hard to be cheery on days such as these.

I feel like I am on a train heading toward an unknown destination and looking back to the station where I can see a figure, a woman, standing on the platform.  It is not clear whether her eyes are directed at the train and if so whether she will wave.  Or just turn away.

She stands, motionless.  Her arm does not come up.

That is Carol.

Or more precisely, that is how I feel.

Until now, for the most part, I have strained to hold on to her as though her disease was taking her away from me.  And, in truth, it is doing just that by loosening her grip on the now while moving more and more into the then of that part of her life still stored in her long-term memory.

But I am just now recognizing my own movement away.  It is not something I willed myself to do.  Quite the contrary.  Yet, just a little while ago, I saw an old film camera on the bookcase in our bedroom.  For some reason, as I picked it up sadness descended on me with an almost physical intensity.  My eyes moistened in response.

The person who used that camera to indulge her love of photography, a manifestation of her highly visual relationship to the world, that person rarely focuses her eyes on anything, and instead responds to the visions her brain manufactures for her from who knows what source, be it memory, or imagination, or some combination of both.

I imagine her disease has put her on that railroad station platform.

It is I who, inevitably, will have to move forward.



I recognize that this down mood will not last.  I will not let it.  I never permit myself to wallow in self-pity for very long.  Writing is something of an antidote.  And then I recall that slight basis for hope prompted by what is probably the overly optimistic assessment of the therapists that they feel some progress has been made, and more is possible.

I permit myself to buy into that proposition.

If the train won’t reverse itself, perhaps I can get off.

Late Thursday evening after a hectic, social day, my weekly lunch, then dinner with brother and sister-in-law, between which a new caregiver relief person, who turned out fine.  The lunch crew now composed of two retired sociology professors, a retired social worker, and an engineer, besides myself.  Conversation some politics—we all lean left—along with local news and personal items.  Supper talk more family centric as it should be.

Had the occasion to go through Carol’s wallet looking for her insurance card.  Some sad reminders in the scraps of paper therein. On those, various notes and reminders written in her beautiful hand, of which she was so rightly proud, and which I wondered at, given my nearly unreadable scrawl.

Too tired last night to continue, so picking it up here.

I am finding as I work on this journal, and in so doing, look more closely at ordinary things that there were clues pointing toward where we are now, but they were seemingly not significant and easily explained away.

Among those papers in her wallet was one that listed the three steps necessary to unlock her mother’s front door.  It has a keyless lock.  To open it, you punch in three numbers in a certain order, and it opens.  The sequence is not that hard to remember, but Carol had written it down.

Innocent enough, perhaps, but it was only one such paper reminder in her wallet.  Another was a list of the telephone numbers of her family.  These are the kinds of numbers it would not be uncommon to have memorized.

Still, nothing that dramatic in these pieces of paper, just a bit of an indicator that she did not rely on her memory in these cases.  But then I found another piece of paper on which was written her own cell phone number.  That’s a little more unusual.

It also reminds me that she never really mastered her phone.

Or the microwave.

Or the computer beyond word processing and emailing.  Never did much on the Internet.

It is hard to explain these difficulties occurring in a woman who was quite at home with  machines, tractors and other farm equipment, cars, and such like.  And a woman who had the manual dexterity to play the piano and type at an impressive rate.

Perhaps her brain is just wired in a certain way, as all brains are.  I’m sure that is part of the answer.  But perhaps these difficulties can also be traced to the very incipient stages of what became her disease.

I see some memory issues in the notes to herself in her wallet.  Those same issues might also explain her replicating filing systems according to which she set up the same files in several different places.  Material relevant to our daughter is located in three or four different filing drawers.

Is that a memory issue?

I don’t know.

If it is, it did not prevent her from being a steady A student through her education career culminating in her law degree.

What I can say is that for the first sixty some odd years of her life whatever these issues were did not prevent her from functioning on a very high level.

Then she got breast cancer.

And chemotherapy.

Thereafter, her disease, which might have been barely discernible, made its presence known with force and effect.  In my mind, I have clear before chemo and after chemo pictures, and they are dramatically different.

I can only conclude, and various medical professionals have agreed, that the chemo accelerated the progress of the disease so that she might not have reached where she is now for another ten or more years.

Whenever I think about this, I have difficulty containing my anger.  The tumor was tiny.  It had not spread.  Only because advances in biochemistry made it possible for an analysis of the tumor to indicate that it was of an aggressive type pointed toward similarly aggressive treatment.  Had we known that the effect of the chemo might accelerate her dementia, we no doubt would have opted for its removal, no chemo, and a wait-and-see approach.

Her medical records must indicate that she had already been sent for neuropsychological testing, which showed minor impairment.  We knew this and thought it was something to be dealt with down the road.

We did not know, nor were we warned, that chemo might accelerate her speed down that road.

The oncologist just followed her usual protocol for such cases.

And there it was, and here we are.


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