Party of the First Part

According to the calendar, we are two weeks into spring.  However, winter does not seem to be paying attention.  The cold continues, as does the occasional snow.  Several more inches are forecast for tomorrow.

It is approaching midnight, and since I have to be up fairly early tomorrow to accept the delivery of the repaired window blind, I don’t want to stay up too much longer.  Still, an idea wants to out itself onto the page.

My neighbor Wendy, who kept her husband home as he withered under the relentless attack of dementia, came to stay with Carol so I could go into town for my fasting blood test ahead of my annual checkup tomorrow.

On the way into town I wa reminded of the last time Carol accompanied me into the lab for one of these occasions, which occur every four months.  My memory blurs a little as I try to pin down which exact ride into town I am recalling, but I am guessing it was about a year and a half ago, before her disease had manifested itself so forcefully.

We had secured the handicapped placard for the car, and Carol was still fairly mobile.  Otherwise, she would not have been accompanying me to the lab.

However, this time we never did get there.  As we drove, Carol became increasingly uncomfortable in the car.  I did not know then, nor can I say for certain now, what exactly was distressing her.  But distressed she was.  Perhaps it was the motion as the car followed the up and down and winding road, the same road she had been traveling much of her life except for those years when she was not living on this peninsula.

As we neared town, her discomfort was so intense that I decided I could not contemplate taking her into the lab with me.  I turned around and drove us back home.  Once in the garage, I found, I could not manage to get her out of the car.  She was in a state of panic, or maybe, it was anger, but whatever it was, she was not going to co-operate.  Finally, as I had done on other occasions when her behavior had gone beyond what I could handle, I called her brother Ward who always seemed able to soothe and calm her.

Not this time.  He could do no more than I and urged me to call 911.

I did.  An ambulance came and she was taken, not happily, into the vehicle and I followed it into the hospital.  There, predictably, we spent hours while tests were run and the emergency room doctor consulted with both Carol’s primary care physician and the neurologist she was also seeing.  The result of the conferencing was the hypothesis that her behavior resulted from a new medication, I believe it was Namenda, that we had recently started.  Since none of the tests indicated any other likely cause, this was a reasonable guess.

All during this time, she was very upset, and disoriented.  She insisted she wanted her husband and rejected the idea that I was in fact there.  Eventually, she calmed down enough to be released, and I was able to take her home, pretty much without incident although she still was not comfortable sitting in the car.

I took her off that medication, and her behavior returned to its usual patterns.

Looking back with the clarity of hindsight attributing this entire incident to the medication is perhaps overstated.

As in so many other ways, now clear to me but hiding their true identity at the time, this event was just dementia flexing its muscles.

Perhaps as a warning.

Or maybe a boast.

Saturday afternoon, an unusual writing time for me.  But a couple of ideas are swirling around in my head and I want to snatch them, lay them out on the table, and see where they want to go. I am familiar with this kind of experience, of ideas seeming to rise up from some hidden factory deep in my brain whenever I am heavily involved in a writing project.

It will be lunch time soon, so I will just get started dealing with this idea effusion, planning to pick it up later, perhaps even this afternoon, for what else am I going to do on another day when winter refuses to leave, offering temperatures going down into the teens, accompanied by occasional snow showers.

I don’t know whether I am the party of the first part, or party of the second part in this blog.  Apparently, my readers share my confusion.  Some see this blog as Carol centric, others as Steve centric while still others seek the middle between those extremes.

Comments on my recent post include one instructing me to “reinvent” myself and just move on, while others express empathy for my situation.  Still another wishes Carol were able to read my words, and yet another sees her own experience in some of the details about Carol that I present.

My conclusion is, first, that the comments, as is always the case, tell a great deal about the commenters, and second, that there is truth in all of them.  This blog is about both of us.  Sometimes the focus will swing one way, sometimes the other, but always it is about the bond between the two, that bond in the past, the present, and the future.

Tuesday night, squeezing in a little writing instead of watching a television documentary about how Hannibal crossed the Alps on elephants.  I’ve heard that story, of course, but somehow it never registered in my mind as real.  It was too spectacular, too long ago, seeming to exist in its own time and space, not the one I inhabit. 

I’ve got that show set to be recorded along with the one following it on public television, that one about the famous Leopold and Loeb thrill killers in the 1920s.  I have read about that case, and I recall Clarence Darrow tried to save the two young men from execution.  I can’t remember if he succeeded.

Though the shows will be available at my convenience, I find I record many more shows than I actually wind up watching.  That is why I’ll keep this writing session a little short, so I will be able to watch the thrill killer one when it actually is on.

I’ve been thinking about my relationship to Carol, using the terms party of the first part or party of the second part.  Something is coming into focus, although I do not yet have a name for it.  Instead, I can think of specifics that lead to some kind of understanding, and then perhaps a word to describe it.

The specific detail that jumps to mind is, admittedly, almost silly sounding when I look at it as others might.  Nonetheless, it is a strong presence in my mind.  It goes this way.  Every day I cross the road twice, once in the morning to retrieve the newspaper, and then in the afternoon, to pick up our mail.

Each time I do so, I make sure I have my phone with me.  Now, here comes the seemingly absurd part.  I want to make sure that if I suddenly fall down from a heart attack, I will be able to dial 911.  The possibility of a heart attack is not the absurd part.  About twenty years ago, while we were still in New York, I had two coronary stents inserted to relieve blockages.  I was asymptomatic at that time, but the stress test revealed the problem, and there certainly is abundant history of heart problems in my family, including my mother, two paternal uncles, one maternal aunt, and my father, although his problem arose when he was eighty-six while the others’ lives were shortened by coronary disease.

Still, all that being true, why do I obsess about having my phone?  Well, for one thing, houses north and south of us are some distance away, and there are none east and west where there is orchard on one side and undeveloped land on the other.  Therefore, conceptually, I could lie on the ground unseen for some time.  On the other hand,  if I had landed on the road a car driver might  see me or  or more likely ride over me, in which case, the phone would do be no good.

Writing this out demonstrates how ridiculous these ideas are.  But what is not ridiculous is the stimulus for these thoughts.

My bed and dementia ridden wife would not know what had happened to me nor would she be able to respond to it if somehow she were made aware of my lying outside somewhere.

It is necessary to point out that my concern is not primarily my own safety.

Rather it is I have to keep myself alive.

For Carol.

Wednesday evening after a quiet day at home.  Spent an inordinate amount of time revisiting family history on my mother’s side, prompted by shortcuts on my desktop to census documents, which in turn reminded me that grandson Peter wanted to know my mother’s maiden name for his own family research project.  I sent links to the documents to him, care of his mother Kerri, but then jotted down what I remembered about that side of the family, and when I could not recall a detail, I dug out a folder that contained the information.

All of which was a useful distraction on a day when not much else was going on.

Tomorrow I have an appointment with the dermatologist to check out precancerous cells on my scalp.

Which leads into what I was writing about last session.

Namely, how my thoughts concerning my own mortality are now inextricably bound up in my self-defined role as Carol’s caregiver.

Ordinarily, I don’t dwell on my demise.  And I wouldn’t be doing so now except for the responsibility I feel for Carol.  I confess I am concerned about how she would fare without me.  Somebody would have to take over.

But who?

Our daughter now lives in Minnesota, and has not yet established herself solidly on her career path as a programmer.  She is getting closer to that goal, but it is not at all certain where she will wind up living.  Probably not here because the job she seeks is likely not going to fortuitously turn up here where the main industries are farming, tourism, and medical care of an aging population.

Of course, there are Carol’s siblings, but frankly I don’t see any of them stepping forward.  At the moment, they are still involved with their mother, now living in a care facility herself, and otherwise they seem to be settled into their own concerns.

Which do not seem to include their sister in any meaningful way.

So, I think my concerns are just realistic.

Which leads to the exaggerated, somewhat comical concern of making sure I have my phone with me so I can call 911 should I find myself disabled on the road on the way back from the mailbox.

Somehow in my imagination, the disabling incident always occurs on my way back.

Perhaps it is my fiction writer’s flair for the melodramatic.

Struck down steps away from his ailing wife.  Mail strewn across the road.

A letter from his publisher in one hand, the other reaching for his phone.

Which he left in the house.

 

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The Insistence of Hope

My old friend the deity I named George decided to pay me a visit today, either to distract me from the serious business of Carol’s seizure or to just pile on, I’m not sure which.  Either, no doubt, would amuse him.

When I saw the message from eBay in my inbox, I recognized George’s hand, for that message informed me that my recent order had to be canceled because of a problem with the shipping address.

Yes there was a problem, but not with the address.

I hadn’t ordered the item.  When I went to my eBay account, I saw the recent history of items I had checked out.  But, of course, I didn’t recognize them, for I had not trafficked on eBay in quite some time.

Most of my morning was thus spent, all the while keeping one eye on Carol, doing the protect the security of my account dance, the steps for which I am now familiar with from previous experiences with Amazon and my email account.

I finished all that just in time to give Carol lunch before the aide came, releasing me to go to town for my weekly shopping.  So here I am at the end of a very long day, trying to pick up where I left off concerning the seizure.

The nurse practitioner came out within an hour or less from the onset of the seizure.  She checked Carol’s vitals, and looked to see responses to visual and audio stimuli.  She snapped her fingers near Carol’s eyes or asked her to move her head toward the right.  Carol’s responsiveness was limited.  She then, with my help, took a blood sample, which she would drop off at the hospital in town to see if a cause for the seizure would be revealed.  Her best guess is that the seizure was just a product of the progress of the disease, and probably not caused by stress as had been suggested when she had the first seizure in December.

Today, the lab test results reported nothing that would have caused the seizure, and Carol seems mostly recovered.  Last night, she had trouble eating because of her injured tongue, and would tolerate only cottage cheese.  But today, she had her usual breakfast, and half a sandwich for lunch.  The aide reported that Carol resisted a full bath, permitted some washing, and went back to sleep.  She roused for a full supper, including a large cookie for dessert, and then went back to sleep.

I’m assuming that tomorrow, she will be fully back to what I now know as her normal state.

Lost in all of this is the fact that yesterday I had to cancel the first visit of the highly recommended physical therapist. He had scheduled two visits this week, and said that unless I otherwise advised him, he would keep tomorrow’s appointment.

I hope Carol is up to it.

I hope he is as good as advertised.

I know both hopes are fingers in the dyke of Carol’s disease.

We are now three days past the seizure and things seem to have settled back down into our regular patterns.  I had lunch today with two of my usual group, one of the others now in Hawaii visiting his son, and the other off on some domestic errand.  I left Carol in the care of a new aide substituting for the one on vacation this week.  She worked out just fine.  Because Carol slept most of the time after eating lunch this aide looked for things to do, to the extent of cleaning windows inside and out.

Carol would surely have appreciated that.

Yesterday, the new therapist arrived.  He is as advertised.  We agreed on setting both unrealistic and more realistic goals.  The former would be success in getting Carol back on her feet, confident enough perhaps, to again use a walker.  The latter started at enabling her to sit up.  That simple fact would facilitate my dealing with her change of clothes.  More ambitious progress would extend that sitting up to a stand and sit transfer into the transport chair so that I would be able to wheel her to the table, and maybe even outside, although that latter would involve figuring out how to navigate steps.

Besides setting these goals, we also discussed strategy of treatment. I was delighted to discover that he believed in going very slowly.  The implementation of that strategy during this first visit centered on his establishing a level of rapport through a lot of conversation.  He did a little bit of range of motion exercises, but mostly talked.  Every once in a while, I would add a comment to his patter, just to keep it moving along.

All in all a very good start.

I will end this writing session on that happy note, for if I continue I will no doubt feel compelled to state the usual cautions.

They can wait.

Good Friday night and also first night of Passover.  Carol is asleep, and I am snatching a little writing time away from watching the Dodger game streaming on MLB network.  This will be a short session, perhaps developed at greater length over the weekend.

If we were still in New York, or if Carol were still well here in Michigan, I would nod my head toward my holiday by having matzohs and macaroons in the house and perhaps cook up a brisket for us and a couple of friends.  That would be my substitute for a full dress seder, which I haven’t really experienced very often in my adult life.  In New York, I don’t recall us doing much more for Easter than getting some chocolate bunnies.  Here in Michigan, we would usually be invited to a family celebration of the holiday, which when the kids were young on at least one occasion included an Easter egg hunt.  More recently, as Carol’s siblings would sometimes attend holiday activities at spouses’ houses, we might go out with sister Jane and family to a buffet in town.

In short, neither of us were seriously invested in holiday celebrations, and left to our own devices would pay minimum attention to them.

So, I do not mind that we will pretty much ignore both holidays this weekend.

The game calls and will not be denied.

It is Sunday night approaching midnight.  As expected the holiday weekend passed quietly.

And that suits me just fine.

 I did a little book business, and attended to a broken string on one of the blinds in the living room.  I arranged for it to be picked up today by the woman from whom we bought these blinds years ago and who repairs them when necessary.  She has family on the Peninsula and offered to pick up the blind today after visiting her relatives.

Winter decided to inform us that it was not done yet, offering some snow and wind on Saturday, followed by dropping temperatures today.

As I was thinking about what I could prepare for supper, the doorbell rang, and there stood Brad from next door, accompanied by Marty, two of my lunch companions.  Brad had plastic containers in his hands, which he offered to me, saying that he was aware that it was Passover but Amy had prepared an Easter dinner for us.

Lovely people, dealing with their own problems but thinking of us.  Brought a smile to my face and lifted my spirits.

Tuesday afternoon in the library.  Lots of noisy chatter from some kids.  Although it is again snowing so far the predictions of a serious accumulation have not occurred.  Roads are still clear.  Snow is anticipated through the night.

We shall see.

An April snow is not particularly unusual hereabouts as the Facebook You Have a Memory on this Date reminds me by reposting images from years back showing the property around our house beneath a white blanket.

But this year, perhaps because of my circumstances, and because as well, Easter occurred two days ago on April 1st, and not because income tax returns are due in twelve days, this snow, this year, puts me in mind of the provocative opening of T. S. Eliot’s “The Wasteland,” to wit, “April is the cruellest month….”

The poem is famously difficult, and this is not the place to even begin to suggest what that line leads into.  Rather, I choose to look at it, more or less, out of its context to see what thoughts it leads me to consider.

First  this five word declarative sentence just seems wrong.  In the northern hemisphere where Eliot spent his entire life, April is the doorway to spring, to life returning from the dead cold of winter.  It is no accident that Easter occurs in the beginning of spring.  Its message of overcoming death would not play well in winter, but it fits the warming season.  If vegetation can return from a dead like state, then so can people who have died.

Of course, Eliot is well aware of these associations of religious belief with the annual cycle of seasons.  What he is offering is a paradox, a seemingly contradictory, even absurd, statement, which nonetheless is true.

April can only be seen as cruel if its promise is not realized.  Because we respond so strongly to the promise of revival, to the prospect of life returning with its usual vigor, we are that much more distressed when that doesn’t happen.

The rest of the poem, built on this paradox, explores it with a wealth of erudite details drawing on anthropology and comparative literature, all of which make it the bane of any undergraduate student who is asked to deal with it.

I, though, will simply take that paradox and apply it to our experience with dementia.

First, complete Eliot’s basic point.  As the title of this poem suggests, he does not see the promised revival as arriving.  Therefore, the hopeful expectation is not, and perhaps will not, be realized.

From there, it’s an easy transference of terms.  Just take every instance that seems to promise a positive outcome and equate it to the disappointment April presages.

Library now quiet, kids gone, but I have to get home.

Late at night.  Wind howling.  Forecast still predicting significant snow through the night and into the morning.

OK, let’s make the connection.

During the course of this disease, this dementia, at least as I have been experiencing it, there have been numerous little aprils, the lower case beginning letter being deliberate to indicate the difference with the month, and the quantity, many more than a mere one a year.

But the similarity with the poet’s month remains.  These little aprils raise expectations that are routinely disappointed.  One would think that this repetition would by its very nature diminish the expectation that the promise will be realized.

But it doesn’t any more than the annual arrival of April does not produce the hoped for conquering of death that Eliot has in mind.  True, the weather does warm, nature springs back to life, only to be followed by the inevitable death of winter.  Again, of course, Eliot is probing for deeper meanings beyond seasonal cycles, but it is enough in this context to say that just as the hope of the season of April inevitably gives way to the winter, the hopes raised by the lower case aprils during the course of the disease will yield to the reality of the dementia’s crushing power.

What brings all of this into the present moment is the arrival of the most recent physical therapist who again raises the possibility that as good as he seems to be he will be able to make some progress toward modest goals, such as enabling Carol again to sit up, and perhaps even, with enough assistance, again sit comfortably in the transport chair.

It is not much, and it may not happen.

The lower case april might well emulate its larger sibling.

But if nothing else it is better to live with realistic hopefulness than wallow in despair.

I’m sure Carol, if she were able, would agree.

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Family Roots

Saturday afternoon, St. Patrick’s Day, an unusual time for me to sit down to write, but some ideas began to percolate as I took a late morning shower and I want to at least get started seeing what they have to offer.

I am in in my office, having just taken care of printing a check rather than using bill pay.  The dog, as has become her wont, only came halfway upstairs.  I have been trying to figure out why she does not follow me all the way up.  This is not a major issue, but rather an engaging puzzle.  Assuming a high level of doggie intelligence, perhaps she understands that the upstairs is now foreign territory since we live so much on the main floor.  On a lower level of cognitive functioning, maybe the dog treats my being upstairs the same as if I had left the house altogether.  Or maybe she is just confused.  Or enjoys the sun coming through the window onto the landing.

I think I’ll go with the last possibility.

Carol is sleeping but might waken soon, so I will just start heading in the direction that is forming in my head, with the intention of picking it up later tonight or tomorrow.

Today, I have on my well-worn Guy Noir sweatshirt.  That fact is what demanded attention, and I will return to it, for it will bring me back to Carol.

But before that, mentioning St. Patrick’s Day reminds me how my father when he was on the job or  in a social situation where he wanted to establish his presence would refer to himself as “the big Irishman.”

That self-characterization was factually questionable on two levels.

First, although unquestionably muscular, even powerfully built, at 5’9” at an estimated 190 lbs., he was not an especially “big” man.  I am three inches taller and carry perhaps ten more pounds.

But I don’t think of myself as “big.”

My father chose to describe himself that way because he was not being literal minded, as I sometimes am.  Rather, he was accurately indicating the enormous strength in that ordinary sized body.  I have no argument looking at his statement from that perspective.

The second point is more interesting.  Why call himself Irish?

To be sure he was born in County Armagh. But his parents were recent immigrants from Lithuania, and by the time he was about five they had moved the family to Manchester, England, where I still have an extended family of first cousins and succeeding generations.

So his Irishness was really just a matter of accidental place of birth. Nothing more.

And yet he liked to refer to himself that way.  I never spoke with him about this preference, but in my own mind I thought I had it figured out.  He must have calculated, consciously or not, that it was more acceptable in America, his adopted country, to which he had emigrated when he was twenty, to be Irish.

More acceptable than what?

Than Jewish.

He did tell stories of the antisemitism, he had encountered growing up in Manchester.  Or maybe he just thought the Irish assimilated here more easily.

That speculation, no doubt, revealed his lack of awareness of how Irish immigrants had been so scorned when they arrived here that the Know Nothing party rose to national prominence in the middle of the nineteenth century riding the vehemence of its anti-Irish, anti-Catholic agenda.

Carol is stirring.  I will continue this.

Later the same afternoon.  Shutterfly just gave me an unwanted shock by sending an email, which opened up with a smiling Carol beaming back at me. 

A promotion.  Trying to sell its services.  The picture was from eight years ago on our trip to California.  The unexpected image struck me hard.

To resume, and complete this long introduction to where I want to go today, while my father was an immigrant, my mother was born in New York, the daughter of Ukrainian parents. The Brooklyn in which I was raised was populated by immigrants of various ethnic and cultural persuasions trying to become American.  Those of my generation had pretty much crossed over into that identity.

Carol’s family background could not be more different.  Her distant antecedents stretch back to the eighteenth century while the more recent ones have been farming on this peninsula since the middle of the nineteenth century.

If America with the exception of Native Americans is comprised of immigrants, some of them have been here a very long time.

Before I met Carol, I had never heard of Garrison Keeil0r, or the Prairie Home Companion, his radio variety show that presented his thoroughly Midwestern, what shall I call it, yes, a New York, Yiddish based word, his thoroughly, unapologetic Midwestern shtick.

I became a fan, and thus the Guy Noir sweatshirt featuring one of his characters I am wearing today, serving as an emblem of how to some extent I merged my New York formed identity with Carol’s.  In other ways I adopted some Midwestern traits, much to the surprise of at least one of my brothers-in-law.  I have learned to use a chainsaw and split wood for our stove.  I have somewhat expanded my knowledge of birds from the familiar pigeons of New York to the occasional eagle flying in our skies or the humming bird at our feeder.

And Carol had learned to love New York when she lived there, the diversity, the energy, the cosmopolitan perspective.  She taught herself to navigate the subway system and to deal with the much greater intensity of interpersonal interactions in the city although I suspect she was never completely comfortable with them, as I never fully adjusted to  Midwestern reserve and conflict avoidance.

Our thirty-six years together now almost equally divide between our respective geographical and cultural roots.

We are both different for having experienced our differences.

But one of us is losing awareness of who we’ve become and seems to be retreating back into who she had been.

As I loaded the dishwasher after supper this Tuesday evening, I saw on the window sill the spent yahrzeit that I had lit a day late.  I have the date marking the anniversary of my mother’s death on my calendar, but over the weekend I had lost track.  More importantly, however, and perhaps part of the reason the day slipped by unnoticed, is that Carol used to join me in this little candle lighting ceremony, yet another of her efforts to help me remember from whence I came.

Spring is trying to advance against the stubborn remnants of winter evident in the patches of snow still on the deck and grassy areas front and back of the house.  The roads, for now, are clear, and I sailed into town for my weekly shopping.

With the approach of warmer weather, we will soon hear the heavy thumping of diesel driven tractors as the farmers begin to prepare their orchards for the upcoming season.  Accustomed as I had been to city noises, these sounds don’t really bother me.

And I expect Carol rather enjoys them, that in her current estate they can remind her of her farm family roots.  This is so even though as a young woman she had made up her mind that, as she has said countless times, she wanted to get out into the larger world.

She did, traveling west to Minnesota and east to New York, from this small rural community to the unspeakably larger environment of the metropolitan area.  As my retirement approached, it seems as though she had seen enough and she felt again the pull of the land and its agricultural rhythms, and made it clear that she wanted to return home.

And so we did.

And I learned the new rhythm.  Up until then, I had long been accustomed to the structure of the academic calendar, fall semester, spring semester, summer, and back to the fall. What I experienced here was similar in having a defined pattern, a beginning, middle, and end contained within the boundaries defined by nature, and the different harvesting time of the local crops, primarily cherries first in the spring and ending with apples in the fall.

I am curious to see to what extent Carol this year will tune into the farming activity.  I’m guessing that the noises of the farm vehicles will stir memories from the time when she drove them, especially the cherry shaker.  Will she recall, as she so often did, that she was the first woman cherry shaker driver on this Peninsula?

I hope she does.

If her hold on the present is shaky, and her ability to think about the future pretty well gone, her long term memory can still provide ballast to steady her as she rides on the troubling waters of confusion.

Coming on midnight after a spectacularly uneventful day, uneventful that is with the exception of one phone call.  Another physical therapist called, this one strongly recommended by the practice supervising Carol’s care.  Apparently, he has had good success with dementia patients.  He will call again to set up an appointment. 

He represents, perhaps, our last best shot.

As our equally divided bookcases represent our different reading tastes, so, too, did our approaches to our arable land.  Carol’s strong visual sense motivated her to plant flowers.  She had definite ideas as to what colors she wanted and where she wanted them to be.  Her last impulse in this direction was a desire for yellow daffodils.  The spot that I suggested, to which she agreed, is a stretch of lawn between our two flowering crab apples.  Creating a planting bed was more than I wanted to undertake in my present circumstances, so I hired a local husband and wife landscaping business to do the job.

Carol had one good season to enjoy that mass of yellow (with a few white sprinkled in for variety).  This year, unless the new therapist has unexpected success that enables her to get to a window, she will not see them.

Although I appreciate the color of flowers, and when I was a kid in Brooklyn I found little patches of soil in our landlord’s yard where I was permitted to grow zinnias, as an adult I prefer to plant things I can eat.  So I have a vegetable garden in which I attempt, with mixed success, to grow beans, potatoes, tomatoes, and different other veggies in different years, such as corn, cucumbers, zucchini, and so forth.

Although I planted the vegetable garden, Carol enjoyed weeding it.  In fact, she liked nothing better than to sit in the dirt attending to plants, be they flowers or vegetables.

I look over to the hospital bed where my farm girl wife sleeps, largely unaware at least for now of the impending planting season.

If she can no longer go to the outside, perhaps I can figure a way to bring it inside to her.

Late Monday night after a difficult day that has left me with little energy.  Will get this section started and look to continue in the next day or two.

Having left Carol dozing late morning, I went upstairs to my office computer to work on Quicken in anticipation of a meeting with our tax preparer the end of the week.  I came down after about half an hour with a basket of laundry.  Glanced at Carol as I passed by.

She looked a little restless, and I thought about seeing if she wanted lunch.  Took the laundry downstairs, dumped it in the machine, and started the wash.

I remembered that I had intended to call the dentist to schedule my regular  cleaning.  Her office had send an automated phone reminder yesterday on a Sunday.  Unusual, but effective. I felt I should take care of that.  We have a land line phone downstairs, but I decided to call from upstairs.

I came back upstairs into the living room.

Carol was not lying as she had been.

Her whole body was shaking.  I approached her on the bed to ask what was the matter.

That was when I saw the blood coming out of her mouth, mixed with spittle, accompanied by a gurgling sound.

Stupidly I asked her again what was the matter.  Of course, she did not respond.  More blood came out of her mouth.  I found a washcloth, wet it, and wiped her mouth as the blood continued to spill out.

I talked to her.  She did not respond.  I took her hand, and she held on to it.

The shaking stopped.  So did the blood.

But still she did not speak.

I sat with her, holding her hand.  Her eyes kept moving from left to right, but I am not sure she was actually seeing anything.

When I was sure the shaking and the blood were not going to start up again, I called the practice and described the incident to the nurse, who said it sounded as though Carol had had another seizure. The blood, she said, likely came from Carol’s biting her tongue.  She wanted to know if I wanted to have her taken to the hospital.  I was not sure what the right thing to do was.  I said I wanted somebody to check her out.  What I meant was I did not know how to accomplish that, but that was what I wanted.  The nurse said she would move people around and send somebody out.

Enough for tonight.  I need sleep.

 

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Two Worlds and Not the Plot of a Bad Novel

Saturday night and while Carol sleeps I have been watching preseason baseball, my Dodgers playing the Cubs.  Ordinarily, I would not write tonight, instead taking my usual one day break to recharge the batteries.  But tonight, changing metaphors, I sense that the well from which I draw my ideas is brimming with thoughts, feelings, and observations that need to be sorted out and expressed.  I will try to get started,  drop the bucket down, then pull it up, and see what’s in it. 

No doubt I will have to drop it in deeper but this will do for now, just a few sentences for tonight.

Today has been emotionally exhausting.  For several hours, I was literally in two different worlds.

This morning at precisely 10:30, I clicked on a link that opened up a service that was about to stream my grandson’s bar mitzvah on Long Island, NY.  I had intended to be there, but for the combination of reasons I have already discussed,  I canceled my plans to drive across country.

Instead of sitting in the temple among family, I was in my usual chair in the living room.  I had made sure that we got moving early enough to take care of all morning chores, and Carol had fallen back asleep.  I had toyed with the idea of setting up the laptop so she, too, could watch, but that was a silly foray back into the then whereas in the now Carol would in all likelihood not remember this young man whom we had not seen very often, and even if  in the unlikelihood that she did, she no longer can process visual content on a screen.

Having abandoned the idea of sharing the event with her, my hope then was that she would sleep through it.  That might sound unkind, but it was a practical concern.

She did.

And so I sat in my chair staring at my laptop screen while occasionally glancing at Carol and past her through our sliding glass door to a view of the back of our five acre property that offers a sliver of East Bay beyond the trees.  On this gray day, the sliver was dark blue tending toward black, and the trees were still bare of their leaves.

That scene contrasted sharply with the bright colors and textures of the interior of the temple, and as the streaming began I could hear the low murmur of the congregation out of the view of the camera, and watch as the final setup preparations were completed on the bima, the raised platform at the front of the sanctuary.

Thus my two worlds.

That’s a good enough start.

Sunday night after the first day of spring forward.  Sun up an hour later and sets an hour later.  Hereabouts dusk now approaches eight o’clock. By the peak of the summer, it will be another hour later.

Went to the store as usual this morning but the Times hadn’t been delivered yet.  Read it online, but missed the feel of paper.  Rest of the day was, as usual, quiet and I had a chance to catch up on email including one related to my writing business.  We’ll see if that one bears fruit.

The starkly different visuals of the bar mitzvah on my laptop screen versus the rural Michigan landscape outside my glass door only begin to explain the separation I experienced yesterday.  There was, of course, and probably more intensely, the matter of the people on that screen dressed out in their fine clothes on the one hand and my bed ridden wife on the other, while not forgetting the ever present dog on the floor.

To be honest, I was not all that interested in the service itself.  There’s a reason why after my own bar mitzvah, I only attended services for necessary ritualistic occasions, primarily bar and bat mitzvahs. My attention to Judaism leans more heavily toward the cultural rather than the spiritual.

So, I waited for what I was most interested in seeing: the people who would be called up to participate at various times during the service.  And most importantly, the bar mitzvah boy himself.  As the rabbi and canter opened the proceeding the fixed camera providing the streaming captured the heads of my daughter and son-in-law.  Then at different points, they and their older son would ascend the bima along with my other daughter, husband and children.  And the grandparents, not forgetting, of course, my ex-wife.

While I sat in my chair in Michigan.

It is hard to voice my feelings, to find the right words.  I can say what I wasn’t.  I wasn’t angry or sad.  Nor was I happy.  Perhaps a little curious, just to see them, how they presented themselves, especially the children.

I suppose bittersweet comes close to capturing my feelings.

But only close.

I also felt, for what it is worth acknowledging, a confirmation of the decision I made, perhaps without full awareness of the implications, of my move a thousand miles away to northern Michigan.

Oh, I had good reasons then for the move.  My New York money buying less expensive Michigan real estate. My lifelong distaste for suburban living.  Carol’s strong desire to return to her home turf.  And maybe underlying all of that, my sense that no particular place claimed my affection.

Except the Brooklyn of my childhood.

And that is gone as is my youth.  I have visited the Brooklyn of now, and I am not at all sure I would be happy there.

So, I reasoned, if that is not too strong a word, that since no place called to me, any place other than suburbia would do just fine.

That judgment was largely correct.

But only largely.

It did not hold up all that well while I was sitting in my chair in Michigan watching my family celebrate the coming of age of my grandson.

While Carol, who always encouraged me to remain involved with my family, lay unaware in her bed.

My grandson did a fine job.

The camera did not provide closeups.

If it did, I would have seen  a confirmation of what I already know.

The final irony.

As if I needed proof of that ironic fact, it was articulated by my English cousin who spoke to me on the phone in the midst of the party later that afternoon.

“Stephen,” she said, “I see a lot of you in Brandon.”

Tuesday night, Carol not quite yet asleep.  She had a difficult day, getting a bath and hair wash she, as the aide related to me, really did not want.  I never witness these proceedings because they occur on my shopping day.

After a brief respite, winter has returned but so far only in the form of cold without much snow.  Spring arrives next week, but northern Michigan is often indifferent to what the calendar says.

Today at my daughter Kerri’s suggestion I downloaded an app that the kids use to video conference.  Only they are not conferencing, they are doing what teenagers do as the name of the app suggests.

It is called Houseparty.

Apparently, Brandon socializes with his friends using this app.  By arrangement this evening, we signed on.  I held my phone in front of me as if I were taking a selfie, and on the other end the phone was so placed as to capture the image of whoever was in front of it.  I congratulated Brandon on his successful performance and he gave me the thumbs up sign.  The conversation moved from him to his parents and then to Peter, his older brother.  Brian, his father, wanted to know what the streaming showed.   I explained the fixed camera provided a clear shot of the bima, but there were no closeups, and only a sliver of the first row of the congregants showed up, sufficient, however, for me to see half of the top of his head.

Peter wanted to show me a couple of pages of Old English he had downloaded.  I didn’t learn why he was interested in this particular material, but I am aware that he is something of a history buff.  He had written a translation above the Anglo Saxon words.  He has been invited to sign up for Honors English, the reading list for which includes Beowulf, no doubt in translation.  I don’t know if that is why he went online to snatch this piece of that ancient language.

Peter’s academic progress was the focus of the latter part of the conversation, and when it concluded I was again struck by the strange feelings engendered by this visit into this other world, the one inhabited by my daughters and their families.  But in particular, I recalled with a familiar pang how fond Carol had been of Peter.  She saw something in him that perhaps others had not, maybe his strong imagination so much like her own, or that he was just somewhat different, as she had been as a child.  She saw that he, like herself, was drawn to the natural world with an unusual intensity.

I told her about this digital meeting and about Peter’s exploration of Old English.  She offered a small smile.

It might have been because she remembered.

More likely, it was just a socialized response, a product of her having been taught manners by her Southern mother.

The dementia has not stripped that bit of good breeding from her.

I suppose that is a good thing, but it is also a reminder of how much else has been lost.

A cold Thursday afternoon in the ides of March, working in the library against the sound of books thumping as they are shelved.  As is usually the case on the afternoons I come here, there are no other patrons. 

I left Carol sleeping as she had been for the past few hours.  The aide will give her lunch when she awakens.

It seems like Long Island is reaching out to me to remind me of my connections to it.   Of course, this past weekend was filled with the afterglow of Brandon’s bar mitzvah, followed on Monday evening by the session on Houseparty.

Then, last night, the phone rang as it has been with increasing frequency lately, one telemarketer after another, but this time was different.  My caller ID told me that it was an old friend and colleague who lived in Fort Salonga, across the road from me and with whom I some times carpooled, and at others played tennis.  Our daughters were of comparable ages but did not develop strong ties with each other.

He called, he said, because last Friday at his retirement party he spoke with mutual friends, heard from them about Carol, and perhaps prodded by that sad news decided to get back in touch with me.

And I am quite glad he did.

We had a warm, hour-long conversation..  We spent some time talking about Carol, but then moved on to catching up, what our kids were doing, and what each of us was into artistically.  I was not surprised that his restless creativity has led him to try writing plays, as well as to continue his old passion for film making.  In the latter regard, he promised to send me copies of his recent documentaries.

But what sticks in my mind today as I sit here in the library are the memories our conversation evoked of the college at which I worked for thirty-five years.  He mentioned a number of colleagues who were at the retirement party whom I remember fondly and certainly would have enjoyed seeing again.

He also told the story, which I must confess I did not remember, of how I as the Chair of Humanities was instrumental in his being hired at the college.  It’s a great story, involving his wearing a suit he found on the road while riding his motorcycle.  He was wearing it when he strolled into my building, asked about a job, and was directed to my office.  I told him he must find a way to write it up.  Or maybe make it part of a film.

However, where all this leads, as it must, is to Carol.

For some ten years after his hiring, at that same college I met Carol, at that time what we in the education game called a non-traditional student, one well past the usual starting age.

She remembers—I should say used to remember—our meeting.  She was working as a tutor in the writing center, for which I was administratively responsible.  I came into the room, and as was my wont, sat on the teacher desk, lit a cigarette—still marginally acceptable in those days– and introduced myself.

And that is how this woman from rural northern Michigan, whose travels had brought her to Long Island, met this kid from Brooklyn.

It’s hard not to make what follows not sound like a line from a bad novel, something which both of us would be ashamed to write.  But nonetheless it is true.

Our attraction to each other, for whatever reason, was mutual and strong.

Strong enough that in memory it remains with as much strength as ever.

Even now.

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On a Date Certain

Tuesday night.  A long, tiring day that began with clearing six inches of snow off the driveway and then driving to town for weekly grocery shopping.  I’ve decided to add back the co-op grocery store, which in the interest of economy of motion, I had been skipping.  I stop there now for the organic veggies, interesting juices, such as blueberry, and, of course, the freshly baked cookies.

My decision to return to the co-op for part of our grocery needs was motivated only in part by what can be purchased there in contrast to the regular grocery store.  The fact is I had never been as enthusiastic about shopping there as Carol was.  She placed far more emphasis on being careful about the food she ingested than did I.  And prices at the co-op are high.

I recognize that my initial motivation to shop at the co-op again was to say hello to our nephew who now works there.  He had just graduated from Michigan State, and I wanted to say to him something like, “See what a first class college education gets you, unpacking and shelving food stuffs.”  I know, of course, he is just trying to earn the money he will need to live on when he begins his unpaid internship working for a local politician.

So, my intention was to stop there once, deliver that line, have a laugh, and that would be it.  As it turns out, his schedule and mine did not mesh, and I did not see him there after all.

But something strange happened when I re-entered the store after not having been in it for perhaps a year.

I felt a positive vibe.

So the next week, and the one after, I continued stopping there, just for a few items, while continuing to do the bulk of my shopping as before.  My attitude toward the store had changed.  It felt right to be there.

And then I understood.  Shopping there increased my hold on the then, on Carol as she had been, pushing back, for the while against the inevitable imposition of the now.

This made more sense when I told Carol the cookie she was having for desert, or the juice she was drinking came from the co-op.  She quite clearly responded with a big smile and a nod.  Of course, she was saying without words,”I always told you how much I like to shop there.”

Wednesday night.  No appointments, no errands, no phone calls today.  Carol in a reasonably good mood for most of the day.  In the quiet I was able to attend to the business of being a writer, researching possible markets for my work, and that was a pleasant change.

Forecast is for snow tonight ending about noon when lunch with the guys minus one is scheduled.  The one is now on the Alabama shore far removed from any threat of snow.

As I write this, I know the east coast is again being hammered.   I hope my daughters and their husbands all got home safely.

Had I kept my plans to attend my grandson’s bar mitzvah, I would probably be driving through this weather.  Maybe there’s some god looking down and declaring let’s give him a break.  He could use one.

I do worry about my own well-being.  Well, of course, I do.  But for me if I wake up feeling a little off my feed, as they say around here, as I have done the past couple of days, I tell myself I just can’t get sick.  If I do, who is going to take care of Carol.

When I make my way carefully over the ice and snow to cross the road to get the newspaper or the mail I feel my hip to make sure I have my phone in case I take a header as I did last winter when my feet flew out from underneath me and I landed on my back.  If I have my phone, I can call for help.

For Carol, that is.

I think of the picture posted on Facebook recently of a family member, a young man in his teens, smiling back at the camera his arm in a cast from a fall on the ice.

I simply can’t afford to be sick or injured.

Of course, something would be worked out.  But I worry nonetheless.

Carol as she usually does is sleeping on her back snoring loudly.  The dog has risen from her bed and wandered into the kitchen.  Sometimes she chooses to sleep by her food dish.  Maybe she thinks doing so will somehow cause the bowl to be filled.  If I am writing about the dog that means the well has dried up tonight and I will just stop for now.

Back at it on a Thursday evening.  Day began, again, with clearing the driveway in time for arrival of caregiver relief and to enable me to keep my weekly lunch date during which we had a good conversation about guns and the second amendment.  Somehow from deep in my memory I recalled that in Boston in 1637 that city’s government disarmed a group of dissenters from the prevailing religious establishment.  I retained that factual nugget from my research years ago for a historical novel I wrote but never sold.

Nurse practitioner came later in the afternoon and found that Carol continues in fine physical shape.

Before the nurse practitioner examined Carol we had a conversation concerning the meeting scheduled for tomorrow in my house to discuss care strategies.  The participants will be the supervisors of the hospital’s private duty program, the two aides who provide respite relief for me under that program, and a nurse who occasionally makes home visits, as she did last Friday to cut Carol’s nails.

In anticipation of the meeting, since it is deliberately being scheduled in my house so as to enable me to participate and provide my perspective, I wrote out what I would like these professionals to know.

To wit.  It is my firm intention to keep Carol living with me in this house for as long as I can.  From that intention everything else flows.  First, I need respite relief from my 24/7 caregiver responsibilities.  Thus, the primary help I seek from the aides is providing me time to do what I need or want to do.  In addition, I appreciate the aide’s assuming certain tasks that I cannot do well, such as giving Carol a bath and washing her hair.  One of the aides does that job much better than I can now manage, and I have no ambition to add that chore to my caregiver skill set.  Finally, I am happy to have trained medical people here regularly who can alert me to problems I might otherwise not notice or be aware of.

When I leave Carol in the hands of the aides, I expect upon my return I will find her safe and her needs well attended to.  All else is extra.  If Carol is sleeping, as she often is, and the aide wants to do some minor housecleaning, good, go for it.  I certainly won’t object.  If the aide wants to try to interact with Carol, read to her, play music, or just chat.  Good.  But if Carol is not interested, that is fine as well.

In the library after the meeting.  Young kids, perhaps first graders, are being coached into producing a puppet show version of Jack and the Beanstalk.  I find it somehow refreshing to be in the presence of such youthful exuberance, the giggles of delight.  Would that the world were so innocently delightful.

But it, especially my world, is not.

The meeting went well.  We covered the points I had laid out, moved on to an extensive conversation concerning products I should buy to provide better hygienic care, and discussed  strategies for improving interpersonal interaction with Carol, based on the aides’ experiences and what perspectives I could provide.

Fee fi  foe fum, I smell the blood of an Englishman comes across the room in  the teacher’s voice reaching but not quite arriving at a basso tone as the show draws to its close, followed by humdrum chore of taking attendance.

We also went over Carol’s meds with the idea of perhaps eliminating some that may not any longer be useful or perhaps are now even counterproductive.

The kids are energized by the show,  their high pitched voices filling the sedate, book lined aisles of the library.  A happy convergence of young minds and the world weary knowledge  stored between the stiff bound covers of the books.

This morning I stopped by my office and saw, as I have countless times before, the old mechanical perpetual calendar on my desk.  This is a device that provides three different wheels, one to change the day, one the date, and one the month.  I have had it on my desk for probably close to half a century, stretching way back to pre-computer days into the present, wherein I continued to turn those wheels to reflect the actual day.

Until I stopped doing so.

On Saturday, August 12, 2017, two days after our anniversary, three days before my birthday, documenting the point I knew Carol would no longer be climbing the stairs to our bedroom.  Actually, to be perfectly accurate, she had stopped dealing with the stairs some time before.  Although I joined her in sleeping on the couch in our living room, I continued, as I do now, to climb those stairs every day for my morning shower and change of clothes as well as my occasional sit down at my desktop computer.

On one of those mornings, I stopped by my desk, looked at the perpetual calendar, and decided to leave it as it was that day August 12, 2017, the date certain when I acknowledged Carol’s now insuperable aversion to those steps.

Another in a long line of concessions to the new now pulling away from the remnants of the old then.

The library is suddenly quiet as the kids have exited.  The only sound now besides my fingers hitting the keys of my laptop is the hum coming from the ventilation system.

That fixed date contrasts conveniently with the meeting this morning, the focus of which was to make the new now as comfortable as possible.  There was no talk of the future, probably because I had declared in my outline of what I thought we should talk about that my intention was to have Carol in the house with me as long as possible.  Therefore, any  talk of the future and the changes it might bring, for now, is premature.

As though that future is not to be.

A useful, but necessary, fiction.

 

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Loomings

Late Sunday morning.  Carol is drowsing, almost asleep, then sort of awake.  I’ve been to the store to pick up the Times and Carol’s Sunday breakfast treat of a blueberry muffin.  After breakfast, she was convinced her mother was waiting for her.  Telling her that her mother is in assisted living and not expecting her did not pull her into the here and now.  She was fixed in some past moment.  Her eyes are now closed, and then she calls my name.  Sometimes she does that just, it seems, to assure herself that I, or maybe her memory of me, is around.  I expect she will fall fully asleep.

I’ve got classical music playing from the local public radio station in part to counter the wind outside, and in part, to provide background while I write for a while.

This morning I did what I always do upon rising from my bed on the couch.  I moved the pillow and blanket out of sight.

Carol, eyes closed, is yelling at some voice or action in her head.  Nothing I can usefully respond to.

Until today, I did not pause to think why I do this.  On a day when I expect a visit from somebody, moving my sleeping material out of sight makes a little bit of sense although I am sure my visitor would not care one way or another.

But I would.

And that is the point, I realized today, and explains why even on a Sunday when nobody is expected, I repeat this minor straightening up activity.

I want the room to look as much as possible as it always did.  That is not a new thought, of course.  But until today, I had not applied it to my morning routine.  Just another of the ways, big and small, I continue to struggle with my refusal to abandon the Carol that was.  Perhaps readers will tire of hearing that refrain, but it is the context within which I live, and it will poke its head out, unbidden and unwanted.

A piece of music has just ended, the wind continues to make noise outside, and Carol’s eyes are closed. The dog is sprawled asleep on the floor.

I realize that writing now as we move into Sunday afternoon is a good counter measure to  my loneliness.

 I can at least commune with myself.

This struggle between the then and now took a very particular shape these past few weeks.  Looming ahead was my grandson’s bar mitzvah on Long Island, N.Y.

The word “looming” might sound inappropriate.

But it is not.

It focuses quite precisely on this then/now dichotomy.

I pause.  The English professor in me objects.  “Dichotomy” is not the right word.  It suggests a division, a clean separation between two opposites.  Night and day.  Good and evil.

My then/now situation is not so clear.  It is this lack of clarity that argues for the applicability of  “looming,” which suggests an event or circumstance you would rather avoid.  I will try to explain how the word fit this upcoming event, which presented me with  a decision I would rather not have had to make, but one I could not avoid.  Whatever I did would leave me unhappy.

 

I could not simply book a flight as I did two years ago when I attended the bar mitzvah of the older brother of the one whose rite was coming up. Then, I was able to leave Carol at her mother’s house while I flew to New York.  Her mother was being taken care of round the clock by several caregivers, and Carol was still functional enough to not strain that set-up.

Her mother is now in  a care facility, so that option was not available.  This time I would  need to find a respite facility for Carol where I would leave her alone, and I would return to  an empty house.

Of course, she would not be literally alone, and the house would only be empty until she returned the next day.

This scenario in my mind was a precursor, perhaps, of what awaits me and her down the road.

Still, I shoved these negative thoughts, whom I imagine to be a shrouded figure in a black robe, sort of like death itself without the scythe, into a closet. I shut the door, and began working to make this trip possible.

I soon discovered that respite  facilities do not take reservations because  their business models,  reasonably enough, seek to have all beds occupied all the time.

But with some difficulty, I found a facility that could be persuaded by a non-refundable deposit to hold a bed open.  Because I was unable to book a flight much in advance,  I decided to drive. My route would take me through Canada into upstate New York with a stop in Syracuse overnight with very good friends, and then on to Long Island where I would stay for two or three days with other friends whom I’ve known since college, and on the grounds of whose house Carol and I were married thirty-two years ago.

I booked the dog into the kennel we use, arranged to have a hospital bed installed in the facility for Carol, reminded myself that I would have to put  a hold on our mail and stop the newspaper delivery.  I made sure I had my abbreviated passport for the passage into Canada, and even dug out a handful of Canadian currency from the last time we had taken this route.

The prospect of a long car trip, something I always enjoy, the stops with friends, and, of course, the celebration itself kept the door of that closet shut.

The black robed figure scratched and scratched.

Then one last problem arose, and forced that door open.

I got a call from the nurse at the hospital who was arranging for the ambulance to take Carol to the facility.  It would cost, she said, eleven hundred dollars each way.  An outrageous amount  for a twenty-four mile trip.

Ignoring  that shrouded figure, now fully out of the closet, I got in touch with the new chief of our local fire department, which has an ambulance, to see if he could provide transportation.  I had made his acquaintance some time ago when I enlisted his help to move Carol from the couch onto the hospital bed that had just been set up in our living room.   He had said, then, to call when I needed help.  I knew not to take that statement too literally, and that asking for the use of the department’s ambulance for a non-emergency trip would leave it unable to respond to an actual emergency.

It was a  long shot.

Of course,  with many apologies the chief said he couldn’t leave his department in such an untenable position.

Further efforts to find an alternative, private or public came up empty.

I could have sucked it up, and agreed to pay the outrageous price.

But I could not convince myself to do that.  The shrouded figure had a bony finger on my shoulder.

He had won.

And I decided to stay home.

I am afraid that some family members have concluded that I did not make the trip because I could not afford it.

That is not right, but I understand why they might think so since I did tell them that the exorbitant transport fee was what decided me against going.

If the situation were as simple as paying the fee would have caused me and Carol to live on peanut butter sandwiches for a month, then the fee would have been the cause.

But that was not the case.

If, like two years ago, I could have comfortably left Carol with her mother, both of them being taken care of by her family, I most likely would have unhappily paid the fee.

But that was not the case.

I could not comfortably leave Carol, not even remotely so.

The fee tipped the balance.

Here’s why.

One morning while I was wrestling with this situation,  I walked back into the living room after attending to some minor household chore, and saw that Carol was visibly upset, trembling and near tears.  As I approached her, she reached out, and said, “Oh, you’re back.”

I leaned over her bed, and she took my arm and pulled it to her.  We sat that way for some time.

And then I was able to get up and prepare our breakfasts.

It is probably hard for those not in my situation to fully grasp both the poignancy of that little scene, and its ambiguity.  In terms of the latter, I accepted that she recognized me for her present Steve rather than her memory of me.  Maybe that is false.  But I don’t think so.  And in any case, that is how I perceived it.

That made leaving her in a respite facility, as a precursor of a permanent move to such a place, like getting a kick in the stomach.

Or consider the following conversation from a few days later.

I came back into the living room from the kitchen singing nonsense words off key.

I do this whenever my mood dictates.  It’s my way of being cheery.

Carol looked up and with some effort formed the word “singing.”

“Yes,” I answered.  “But I don’t sing on key.” I paused.  “You like to sing, don’t you?”

She smiled, and we were, for the moment, together in the here and now.  I pushed the envelope to see how far we could go.

“When we first moved here,” I continued, “you joined a chorus in town.”

She looked puzzled.

“Did I?” she murmured.

“Yes,” I replied.

And then we were lost somewhere between now and then, her memory having failed to bring up what was, in truth, a minor episode, as for reasons I no longer recall she did not stay with that singing group very long.

I turned the conversation back to a firm foothold in the now.

“I’ve got a scone for breakfast for you.”

“Scones, they’re good.”

“And I went to the co-op and got you the pear juice you like.”

That brings a big smile, and for the moment, we are back together in the same time frame, hanging on to a shared memory.

And so it goes, from moment to moment, and day to day, like spent waves approaching our footprints in the damp sand  and then with the next incursion of  the incoming tide  washing them away .

Going to New York would have yanked me back to dry sand beneath my feet.

Perhaps a good thing.

But I wasn’t ready for it.

 

 

 

 

 

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To Hoist or Not to Hoist and Carol’s Journals

Another deceptively warm day, snow melting, sun out.  You’d almost think spring was around the corner. But it is mid-February in northern Michigan, and snow is predicted for early next week.

Today was, in fact, Valentine’s Day.  A few cards for us, or Carol alone, came in the mail the past few days.  Carol and I never paid much attention to this contrived holiday, and so it did not generate any feelings in me.  I suppose I could say that for us every day was Valentine’s Day.

I have started to listen to classical music streaming from WSHU, a station from Connecticut I used to tune to when we lived on Long Island. It is playing in my ears now as I write.  I don’t recognize the piece, but it has a strong romantic feel, perhaps in honor of the day

Music just ended.   It was from Wagner’s Tristan und Isolde.

The ebb and flow of this disease continues, oscillating within very narrow parameters.

The therapists, physical and occupational, were back today, and again made some, limited progress.  Got Carol on her feet and into the transport chair.  Then wheeled her into the kitchen with the idea of having her stand holding onto the sink.  When that seemed a step too far, they settled for having her eat her lunch, a protein bar, while sitting in the chair, and then back to her bed.

During these proceedings, I assisted both verbally and physically.  When she was sliding out of the chair, I helped hoist her back up.

Tired. Enough for tonight.  Resume tomorrow.

In the library this afternoon after snow shower this morning.

Teacher has brought kindergarten kids into the library and is offering a lesson on Washington whose birthday will be celebrated in a few days.  She ends by saying  that she shares the same birthday and wouldn’t it be nice if she were elected the first woman president.

I am thinking about chairs in the context of the narrow parameters in which Carol’s disease seems to move.

This morning after giving Carol her breakfast in her bed, I served myself mine sitting at the kitchen table.  I looked up, across the table, at her empty chair.  That image prompted me to remember my watching television last night alone in the green room, sitting in one of the matching upholstered recliners.

Those chairs contrast in my mind with the transport chair, an imposition into our household necessary to deal with the effects of Carol’s disease.  With heroic efforts, it might be possible to touch the top of the narrow band within which she is living so that I will be able on a regular basis to get her in and out of that chair.

The therapists are moving in that direction.   They are not sure that they will be able to get to the point where I alone can do what now requires both of them, namely, to move her from her bed into that chair.

They suggest a device called a Hoyer hoist, which would literally lift her out of bed and deposit her into the chair.  Once in the chair, perhaps supplemented by another recommended device called a pommel cushion, which would prevent her from slouching down and off, I would be able to wheel her to the breakfast table.

And the tv room where we could watch television together.

Sort of.

For she would not, I am sure, really process the visual images on the tv screen, although she might do better with the audio.

That might be enough for her to get some enjoyment out of the upcoming Kentucky Derby, advertisements for which have already started airing.  Carol, an excellent rider herself, loved horses and horse races.  We used  to take walks along a dirt road next to a fenced in pasture, and she always had an apple or two with her to offer to the horses, who would trot over to us and take the fruit out of her hand, all of that pretty extraordinary for this city boy, whose experience with horses was of the wooden variety, to witness.

 

Sunday night. I alternated my tv viewing between my continuing binge watching of Peaky Blinders, a kind of British Sopranos, and the usual Victoria, which just manages to be on the right side of the balance between historical drama and soap opera.

Some time ago I came across Carol’s handwritten journals in which she recorded her progress on the fiction she was writing.  For reasons I now will never be able to ask her about, there is a huge gap in these documents.  Both start about 2005 and continue into the next year.  One stops there while the other picks up for a few pages seven years later in 2012.

That there are two journals essentially covering the same period does not surprise me.  I long ago understood how Carol’s difficulty with organization and fear of losing things produced duplication of storage.  Even when she worked with word processing, I could not convince her to simply save the new version under the same file name with which she had opened the document.  Instead, she would save each version with a slightly different name by adding a number or date, thus making each a new file. The result was a long list of files that were essentially the same except for a little new material in each.

So the two journals pretty much covering the same ground is, if anything, predictable.  I did find them in different locations.  But the gap in the one before picking up again seven years later  is not explained by this organizational difficulty.

To the best of my recollection those intervening seven years were unremarkable, nothing of any import having occurred during that time.  So why she abandoned and then returned to that journal will have to remain a mystery. Also unanswered is why the continuation did not last very long.

As I read over the above to prepare its transition from journal to blog post, I believe I have the beginning of an answer, which I will explore in the journal and hope to have it appear in a blog post when its turn arrives.

What I found most interesting besides this gap were the comments concerning her aspirations as a writer.

I had known, of course, that Carol wanted to succeed as a writer. I did not know the intensity of her ambition, revealed in her journals. I probably took too literally her sometimes expressed  concerns as to how she would handle celebrity as a writer should it come her way.

Which, I now more clearly understand, did not mean she didn’t want the recognition.  She did.

But she also wanted to use her writing to document the wrongs she saw.  I was struck by a passage in the journal where she argued with her mother’s insistence on always being “nice.”  The world was not nice, Carol thought, and her stories would be honest in representing that fact.

In lesser hands, this motivation could well lead to failure as a writer by letting the message sink the story. But Carol was too good a storyteller to let that happen.  Her stories do deal with the harsh realities of disadvantaged people, whether they be unsuccessful farming families, migrant Mexican workers, or, and most especially, Native Americans.  But they do not preach.  They just reveal.

I was also unaware of how she struggled to do what she loved, which was to write.  In the journals, which for the most part say nothing about me, she expresses her frustration that I would never understand her difficulty overcoming her Attention-Deficit Disorder.  I simply do not remember much discussion of that problem, perhaps a few passing remarks, widely scattered.

But apparently she wrestled mightily with it. The journals provide some support for that idea in the sense that the notes meant to pull together her ideas for her fiction were more like stabs rather than a smoothly developed progression.

I guess I did not pick up on whatever clues I might have because the product she produced was so damned good that I just assumed it did not require more than any good writer’s self-editing skills.

It might also explain, although there are certainly other explanations, why she could never master longer canvases, such as a novel, or the non-fiction book she so much wanted to write about Sarah Lane, who upon the death of her husband became the first woman keeper of the local lighthouse.  Carol did a tremendous amount of research, but could not get a handle on the possible shape of the book.  She sought my help, and I tried to organize her material for her, but probably because it was my approach rather than her own, that did not work.

I suggested she try to write it into a novel, thinking the fictional approach might be easier.  I don’t believe she ever started down that road.

Of course, I now see what I didn’t see, and which, for her own reasons, she did not make clear to me.

ADD.

There is also just a hint of the predictable friction that can occur between two writers who happen to also be lovers.  I don’t think we competed.  Our egos were too strong to feel challenged by the other.  Rather, because we were so in love with each other, critiquing each other’s work could be problematical.  Not that we wouldn’t offer honest assessments.  We did.

But we didn’t always agree with those assessments.

And finally, though, we each sought the approval of the other.  If nobody else in the world liked what we wrote, it would be nearly enough if the other of us did.

I had to add that qualifier nearly.

But the point remains.

Among all the qualities of our relationship I miss, our shared passion for writing is one that leaves a huge void.

After another faux spring day with temperatures approaching sixty degrees, winter decided to return today with a mixture of freezing rain and snow predicted for tomorrow as we head into the weekend.

A quiet evening.  Carol has been sleeping a lot today, as has the dog.  I couldn’t get interested in anything on television, nor did I feel like reading.

So, since it is too early for me to go sleep, I might as well write for a while.

I am feeling unusually lonely.  Nothing dramatic has changed to account for this mood.

But if not dramatic, there seem to be a few contributing factors.  One is a discussion I had with the physical and occupational therapists yesterday.

They pushed me hard toward ordering that hoist, the device that would enable me to lift Carol off the bed and into a wheelchair.  They had succeeded once again in getting Carol on her feet for a bit and then into the chair.  But when they tried to get her to sit more upright, the situation deteriorated.  Carol slouched and I had to help pull her up and off the chair, so they could maneuver her back into the bed.

Perhaps that is why they started to promote the idea of the hoist.  They described how good it would be for Carol to again move around the house, albeit in the chair.

That had some appeal for me.

But accommodating this device in our living space would require creating space for it.  It will not fit in the room where the bed now is without removing some furniture.  The likely candidate would be to detach one leg of our L-shaped sectional.

Then where would that go?

I found myself losing myself in these very mundane considerations.

And as usual, they were masking my deeper concerns.  Still, I agreed to have them begin the ordering process.

After they left, the mother/daughter housecleaning team came and after they were pretty much done I talked with them about the hoist.  They’ve been coming to us for a long time, and I was quite comfortable discussing this matter with them, as they were easy about offering their views.

We considered several possible landing places for the sectional piece.  But for each there was a problem, a narrow doorway here, too many turns on the staircase there, another narrow doorway upstairs leading to the unused room that had been Carol’s office.

No doubt professional movers could work something out.

But these issues, I realized, were not primarily what was bothering me.   Upon calmer reflection, I did not see the huge advantage that the therapists had envisioned.  Even if I were able to use the device to get Carol into the chair, she would no doubt initially, and perhaps permanently, resist the process.  With her intense fear of falling, being suspended in the hoist, persistent fear, if not outright panic, is quite likely.

In short, I did not see enough positive outcomes to make this lift idea attractive.  I also realize that the therapists, through their own comments, see obtaining this device as a way of justifying continued Medicare support because they would be training me to use it.

Without that justification, and with no clear sign that their efforts were producing a quantifiable result, they might not be able to continue getting paid.

That is a problem.  But not a reason to agree to  getting a device for which I really see issues on the one hand,  and not much to be gained, on the other.

I relayed my decision not to get the hoist to the therapists.

They came one more time to have me sign off on their ending their efforts.

I did so with some relief.  The therapists’ push for progress, justified perhaps in their minds as necessary for them to provide service, had influenced my judgment as to what was right and good.

For Carol.

For me.

At this time.

 

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Henry, William and Rowing

Winter has returned after a brief hiatus.  This morning after breakfast, I cleared five or six inches of snow off the driveway.  The forecast for the next week or so is more or less snow every day, nothing spectacular, but consistent.

It is Friday night approaching midnight.  Carol woke up a little combative but settled into a pretty good day after that.  I look over at her birthday roses, and see that they are wilting. In all honesty my care of them was perfunctory, adding a little new water every couple of days and ignoring whatever was in the little packets the florist had instructed me to add to the water.

That thought leads me to what follows.

Years ago when we took a car trip to Salem and Concord Massachusetts, the home turf of a number of my favorite writers, I bought a souvenir T-shirt.  On its front, the face that Nathaniel Hawthorne said belonged to the ugliest man he had ever seen, stares out under one of his strongest recommendations.  “Simplify,” it says.

With that word, Henry David Thoreau preaches his antidote to what he perceived to be the misery of his society where he saw the masses leading lives of “quiet desperation,” suffering from the disease William Wordsworth had earlier diagnosed in a sonnet as wasting our powers with too much “getting and spending.”

All of which is an unnecessarily literary preface to the fact that I have simplified my life, not for the perhaps more substantial reasons of Thoreau and Wordsworth, but out of necessity.  Given my caregiver responsibilities and time constraints I cannot tend to many things I would otherwise take care of.

I do manage the getting and spending in the mundane terms of the household cash ebb and flow, paying bills, and keeping an eye on disbursements from my IRA.  I recognize that both Henry and William had more fundamental ideas in mind, but this is where I am now.  I do the cooking, laundry, and necessary cleaning.  Otherwise, I subcontract or ignore the rest.

So as winter approached instead of hauling out the leaf blower, I contracted with the local company that I used to hire only to finish the massive job of clearing away the mountain of leaves layering our heavily treed property.

I gave up keeping the bird feeders stocked.  Our feathered friends were on their own.

For now, I will probably continue to snow blow the driveway, but if that turns out to be too time-consuming or onerous, I will hire help for that chore.

These extra expenses are not particularly troublesome since our entertainment budget, once fairly healthy, has now dropped to about zero.  Instead of going out to eat or attending concerts and movies, money goes to do things I no longer feel I can do .

As with so many other changes, this one parallels how I have come to see myself.  I am primarily a caregiver.  Responsibilities associated with that role take priority over everything else.

I get no gratitude from Carol, nor should I expect any.  I suppose the dog is happy that she is fed and let out to do her business as necessary.  Friends tell me they respect what I am doing, but they cannot have any idea of what that really means.

I’m not talking about needing a pat on the back.  After all, keeping Carol at home with me for as long as I can has been, and remains, my deeply held preference.

I am only holding up a figurative mirror to look at myself, to see what I have become through the lens of what I can and cannot do.

What comes back to me from that activity is clear enough.

What follows, though, remains shrouded in uncertainty and ambiguity.

Super Bowl Sunday night after a snowy weekend requiring several sessions behind the snow blower to clear the driveway.  I watched the game on the big screen tv downstairs while Carol slept.  Because of my interest in football, she sometimes tried to watch games with me, but she never really succeeded in sharing my enjoyment.  I don’t think she objected to the violence of the game, for she loved watching boxing.  I suppose learning the rules and strategies required more effort than she wanted to invest.

The question now, of course, is moot.

We are both accommodating ourselves to the hospital bed.  As advertised, it makes certain activities, such as raising Carol to  sitting position, easier.  The sleeping surface is considerably wider than that which the sofa offered, and Carol sometimes gets herself into odd angle positions, but for the most part she does sleep well enough in it.

I have now, however, discovered one of the reasons I delayed for so long in obtaining  the bed, and why in spite of its advantages, I am still unhappy with it.

I thought my reluctance was based on the presence of the bed introducing an unwanted change in the feel of our shared living space.

That much was, and is, true.

But I now understand that there is a deeper level.

When we were both sleeping on the sofa, it was possible for me to position myself in such a way as to be able to be in close physical proximity.  Our sofa is an L-shaped sectional.  Carol occupied and slept on one leg of it.  During the day, aside from attending to her needs, I did  not spend much time on the sofa.  But sometimes, I would bend myself around the corner of the sectional so that I could put my arm around her.

I cannot do that with her in the bed.  It is placed against the wall opposite the sofa.  I can sit on the arm of the sofa and reach over or through its railing, but doing so is awkward.

Before, I typically slept on my leg of the sofa with my head away from her and my feet encroaching into the corner section.  In the mornings, I would awaken, reverse my position so that my upper body was now on that corner section, and I could reach her to hold her hand, or stroke her cheek or hair.  Sometimes she objected to this attention, but most times she accepted it happily, or so it seemed.

I now see that my ability to do that preserved the fiction that we were still living as we had, in the shared intimacy of husband and wife.

The bed has removed that fiction.

In it, she the patient, I the caregiver.

Woke up to a steady but light snow this morning.  I decided to forego my usual Sunday morning jaunt to the store to pick up the NY Times along with a muffin for Carol and whatever else we might need until I do a full grocery shopping. Just didn’t want to deal with the snow although there wasn’t that much accumulation.  Read the paper online, and gave Carol her ordinary breakfast.

It’s Sunday night as I write this.  Watched Victoria and Queen Elizabeth’s Spies.  Carol, of course, dozed in her bed.  Even the dog chose her bed instead of coming into the tv room with me.  I’m getting used to these solo television watching occasions.

But not happily.

Every once in a while a line from some source will jump into my consciousness for no particular reason, or at least no reason I can identify.

That happened yesterday.  I don’t now recall what I was doing at the moment, but whatever it was I am fairly certain it had nothing to do with this sentence that flashed itself into my consciousness.

“So we beat on, boats against the current, borne back ceaselessly into the past.”

That is the last line of F. Scott Fitzgerald’s The Great Gatsby.

Although decades ago, I taught that book in an American Literature survey course, and although I admire it immensely, I have not thought about it in a very, very long time.

And yet, yesterday, that line popped into my consciousness.  No, that’s not exactly right.  I did not have all the words, or even most of them.  Rather, I recalled that the novel ended with something about a boat and rowing.  I then did what we all do nowadays, rather than digging the book off whatever shelf it is now on, I Googled something like “Gatsby rowing.”

And the line appeared.

This is not the place, nor do I have the energy, to suggest the line’s relationship to the novel,  why Nick Carraway, the narrator, is made to say it.  Rather, taken out of its context it speaks powerfully to me in my situation.

It captures the pull backward that I deal with numerous times every day whenever some thing in our house reminds me with considerable force of the life we have left behind, be it the Victorian pictures of a girl reading a book on the wall in the downstairs bathroom, or the wooden sign announcing “Baths 5 Cents” on the wall of the upstairs bathroom, both chosen and installed by Carol, the one expressing her own particular version of feminism informed by her love for reading, the other a humorous reminder of her historical sensibility.

And of course, there is the more serious pull of those moments, far enough between, but powerful when they occur, when with some gesture, or word or two, Carol for a moment is again herself.

That happened a night or two before, and again last night, when on each occasion, she said in a very quiet voice, “I love you.”  I permitted myself each time, to savor the moment.  It would have been wiser, perhaps, to discount it, to understand its ephemeral nature, how impossible it is to be sure of its significance.  She might even have been declaring her love for the me in her memory rather than the me in front of her.

But of course emotions trump rational thought.

And so, for the moment, I let myself in my little rowboat be borne back by the current into our shared past.

The larger question is how hard do I want to row against that current.  Do I, in fact, want to best it and begin to leave that past behind me.

Fitzgerald is no doubt suggesting that so to do is impossible.  We may beat against the current, but it will prevail.  Perhaps we will make a little progress, only to be thrown back.

Thus far, I see Fitzgerald’s words as an accurate representation of my situation.  The metaphor is apt: rowing against the current is an arduous business, forward movement bought with the expenditure of considerable muscular energy. That thought reminds me of the time my father took me fishing in a rented rowboat on Sheepshead Bay off the south coast of Brooklyn, and only with great difficulty rowed us back against the outgoing tide.  Shortly thereafter, he bought an outboard motor he would attach to the rented boats.

For me, now, it would be the expenditure of emotional rather than muscular energy to provide the movement away from the past.

I can also see that if the past is dominated by pain or disillusionment, as may be the case for Nick when he offers these words, then the point is the difficulty of putting some distance between you and the occasion of that pain or disillusionment.

Moving from a painful past is complicated when the pain is, as is often the case, tied up with something very good.

Which is where I am.

I do not want to forget my past with Carol.

But remembering it, and knowing how it is irretrievably gone, is it own kind of pain.

Nor do I know what exactly I am rowing toward.

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Of Living Room Ambience and a Box of Picutures

The weather has warmed for the while.  It rained pretty much all day, and much of the snow is gone.

Carol is  sleeping noisily on the couch with her mouth open.

A busy day of problem solving punctuated by a visit from the nurse practitioner along with a student doing her practicum to check on the possibility, raised by one of the aides, that Carol has a urinary tract infection.  They did not find any evidence of that.

With a fair degree of reluctance I agreed to get a hospital bed for Carol.  This is a huge step.  I have been resisting for emotional, not practical, reasons, but practicality finally won out.

On the surface, my resistance was aesthetic.  I did not want to change our living space into a medical facility.  To be sure, there are medical devices scattered about, the travel chair near the steps reminding me of when Carol would ride in it, dismount, and climb to our bedroom, the cane in one corner, the two walkers in another corner, the grab bars in doorways and on walls leading to the steps, the shower bench and stool in Carol’s office, all of these obvious indicators of our attempts to deal with the disease’s progressively debilitating effects.

But in spite of them, somehow from my perspective they did not change the ambience of our living space.  They were like the dog’s hair shed onto the floor, annoying but not visually offensive enough to change the character of the rooms in which they are stored.

The bed, though, is a different story.  It will dominate the living room simply by virtue of its size.  We might be using the sofas as our beds now, but they are still sofas.  The hospital bed does not belong in our living room.  The other items can be removed and stored, for they no longer serve their purpose.  But the bed is its own purpose.

Like the sofa, the end table, and the cocktail table that provide the configuration of the living room, the bed is itself a piece of furniture.  It belongs in a bedroom.  Installed in our living room it imposes, it dominates, it demands its presence be recognized as signaling something profound.

Its presence states that we are crossing a line in our long journey away from the then toward a new now, one from which there is no turning back.

The misplaced bed, no doubt, will remain where it is until its occupant no longer needs it.

Another January teaser day, temperatures reaching toward 50, the sun out, and greying snow melting.  My head knows this is a mirage like the oasis in the desert of the winter, but as folks around here say, sure, but enjoy it.

In the library, back from a quick hop to town to buy a half dozen roses, three red, three white, for Carol’s birthday.  I declined the offer of a clip-on card on which to write a note.  Since she can no longer read, I didn’t see the point. 

I placed the flowers on the lid of the wood stove I decided not to use this winter, as one thing too many.  The foot of the hospital bed nudges the stove, so that the flowers will be in Carol’s direct line of vision. 

I directed her attention to them and was rewarded with an appreciative smile.

Last night as I came down the stairs after brushing my teeth, a title for a piece of writing jumped into my head: A Tale of Two Toothbrushes.

So here it is.

One toothbrush in the upstairs bathroom.

The other one in the downstairs bathroom.

Both are inexpensive battery driven models I bought some time ago, one for each of us.  Mine is the one upstairs.  Carol’s the one downstairs, sitting next to her toothpaste on a shelf in that guest bathroom .

However, I have pretty much stopped trying to brush her teeth with her electric toothbrush.  I have, instead, switched to disposable swabs.   But the electric toothbrush remains in the downstairs bathroom, and  sometimes I use it instead of mine upstairs.  Each night when I am ready for sleep, I decide which toothbrush to use.  If I am tired, I will opt for Carol’s.  There is no reason to worry about germs.  Still, it feels a little odd because as in so many other ways using her toothbrush is an acceptance of the now.  First because it is hers and she no longer uses it.  And second because to employ that toothbrush I have to do so in the guest bathroom.

On the other hand, when I haul my weary carcass upstairs into the main bathroom, and take my toothbrush and my toothpaste off my shelf in that bathroom, I am immersing myself into the then.

Today was Carol’s birthday, and I was pleased that her sister Jane came by to wish her a happy one and to give her a card.

In all honesty, I don’t think her birthday registered much in Carol’s mind.  She smiled at the flowers I bought for her, but thereafter did not seem to pay them much attention.  Similarly, she responded only briefly when I showed her the few cards that arrived or relayed the digital best wishes from an old New York friend, a fellow Aquarian.

So tonight, after a day uneventful except for Jane’s visit, and otherwise perfectly ordinary including my going to town for groceries. I am in my chair and Carol has fallen asleep.

This past weekend, Laura,our sister-in-law brought a sizable lidded plastic box containing photos that had been among Carol’s family’s material I had given some time ago to both Jane and Laura. In going through all of that stuff, Laura had found a trove of photographs specifically relevant to us.

I took a brief look at the contents of the box, which I had set on the dining room table.  The window in that room faces west, and as I looked up from the box and through that window I noticed how the late afternoon sun emphasized the gray grime on the glass.

I know that grime would have irritated Carol.

One of the few things we disagreed about was the need to keep windows clean.  As far as I can remember the windows in the apartments in Brooklyn I lived in both as a child, and as a young adult, were never washed and as a result always wore a layer of grime.  If you wanted to see clearly, you’d open the window.

I have no idea how often the windows in Carol’s house were cleaned.  I do know that her heating engineer father had the windows of the house he had had built permanently sealed shut to keep out as much cold air as possible.  How clear they were I do not know, so I cannot assume that their relative cleanness had anything to do with Carol’s preference in this regard.

However, what I do know is that Carol was an intensely visual person.  That point was driven home with considerable force by the sheer volume of the photographs in the box that Laura brought to me.

Of course, I always knew Carol loved photography.  We have enlargements of some of her photos on the wall.  And there are about half a dozen substantial photo albums on an otherwise empty bookcase in our basement apartment.

But what is now clear is that the albums represent a screening process that selected those shots worthy of being saved.  What was in the box, however, was the raw material.  I do not know if pictures of the same places and events are in those albums, so that the box material is the rejects.

I don’t think so.

Because what’s in the box, primarily, are the envelopes from that pre-digital age  that came back from whatever developing service we were using, which provided two copies of every picture.  And there were no single prints, suggesting that a picture had been removed and placed in the album, leaving its mate in the envelope.  So I don’t know why none of these pictures, which were shot between 1999 and 2000, as indicated not only by the obvious ages of the people, most easily established by those of our daughter, but also by the dates stamped on the envelopes, were put into an album.

I did not immediately dig into this material.  I was apprehensive.

I would be immersing myself in our past, and I was not sure how ready I was so to do.  But I began, tentatively, and then gained some confidence and moved through the envelopes with some pace.

As I flipped through the pictures, I found myself largely unable to identify locations other than the ones that clearly showed themselves to be our house and grounds on Long Island. The bulk of the others seemed to be from our various vacation trips, but try as I would, I could not remember where we went those two years.  Since there were a lot of beach and water shots, I guessed Cape Cod.  But not all the water pictures suggested ocean front locales as there were ones showing Carol and Danielle in a canoe.  Possibly that was from our trip to Isle Royale, and there were a couple that were taken from what appeared to be the seats in a boat such as the one we took across Lake Superior to that island.

Still others in a different part of the box were very obviously shot on our trip up to the Bread and Puppet summer festival in Glover Vermont.

Or our drive out to South Dakota.

I realize as I tried to locate the where of these pictures, I was distracting myself from what I had feared.

That I would too forcefully be immersed in the then, and at our most relaxed and happiest times.  We both loved to travel, particularly car trips.

Even when our vehicles were of questionable reliability such as the aging Corolla that carried us up to Vermont for which the mountains were something of a challenge.

But then I realized something else.

Carol appeared in very few of the pictures.

Naturally enough.  She was the photographer.  Her subjects were our daughter, occasionally me, and predominantly whatever was interesting in the scenery, whether it was the buffalo herd in South Dakota, or the whale somewhere in the Atlantic, and in fact, water anywhere, she always loved water.  One of the reasons we bought our present house is the distant view we have of the east arm of Grand Traverse Bay.

So for my first excursions into these pictures, I was spared the trauma of seeing more than a handful of images of Carol in the prime years of her young motherhood

Later, as I dug further, I did come into another batch that was largely of her.  I could not pin down the circumstances but there they were.

They hurt.  But not as much as I thought they would.  Even now, as I hear Carol’s labored breathing in her sleep, reminding me of the now, I find myself somewhat better able to deal with the then.

I suppose that is some sort of progress.

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Between Past and Present

Near midnight on Sunday.  Watched a two hour season premiere of PBS’s Victoria alone, although the dog slept through the show, lying, as she usually does, on the floor in the tv room.

I did think of inviting Carol to join me, as we always watched Masterpiece Theater together on Sunday nights.  And she had a particular interest in Queen Victoria.  One of the last books we got for her was the new, massive biography of the queen.  When it was clear, however, that she could no longer process words on the page I read the book aloud to her until her attention flagged and she lost interest.

So  the combination of our past habit of watching this show together and her interest in Victoria, made me consider asking her to join me.  A little reflection, though, convinced me to not even try.  Getting her into the room would have been a formidable task, and then, even more important, I remembered that she could no longer focus on the audio and visual stimuli offered by the television.

This morning upon waking, Carol asked, “Steve, are you here?”

That brought a silly smile to my face.  I was convinced she was aware that she was directing her question to the present me, not the remembered me.

I’m not sure why I was so sure.  It was probably something in the tone of her voice.  It had a certainty to it as though she was fairly certain that I was nearby, the actual physical me, and not the shadowy me of memory.

This incident fits a recent pattern.  For the while, her condition seems to have stabilized, including occasions of what appear to be a stronger connection to the present moment.

These moments remain scattered and outnumbered, to be sure, by the times when her mind seems elsewhere   In fact, today she was having persistent conversations with person or persons unknown.  These appeared to be delightful interactions, accompanied by laughter

But they clearly had nothing to do with me.  Or the dog.

And herein is the horrible dilemma provided by this disease.  The teasing, tantalizing moments that trap me into responding as though they indicate some kind of return to normalcy.

They do not so indicate.

I know that.

But I let myself be fooled each time anyway.

Again, late, and I’m tired.  This Monday was Martin Luther King day.  No mail, few calls.  I spent a fair amount of time setting up appointments for matters I have been ignoring, such as to the periodontist, or to the elder attorney with whom I want to explore the possibilities of Medicaid for Carol. 

I’ll scratch out what I can, continuing where I left off.

A day later and Carol woke up with an intensified fear of falling.  I had to reassure her verbally several times, and then when those measures failed, I positioned myself lying down on the sofa so as to be able to hold her hand or stroke her cheek to reassure her that she was perfectly safe.

When this fear persisted even after breakfast, I realized I had not yet administered her morning meds.  Perhaps that had something to do with the continuing problem.  In any event, after a while she seemed to settle down without the fear.

This is the up and down that people talk about, the good day/bad day syndrome.  I honestly don’t know if the good days are worth the inevitable bad that follows.  And to talk about days is a misnomer.  The changes are not that regular, predictable, or evenly spaced out.

After this rough start, the day then moved to a kind of ordinary pattern during which I offered, and she accepted, BLTs for lunch.  She didn’t sleep as much during the afternoon as she usually does, and then ate a good supper of salmon, rice, and yellow squash.

Later in the evening, I asked her if she wanted me to read one of her stories to her.  I had put two journals containing her work on the table next to the sofa so that the aides could read to her.  One had tried, but told me that Carol had no interest.  Nonetheless, I asked her tonight if she would like to hear her story, and she assented.

I read “Wings to Follow,” all of it, and she listened attentively, smiling at lines she apparently remembered.  I’m not sure when, or even if, I ever read the story, at least in its finished form.  Reading it tonight reminded me, if I needed reminding, how good a writer Carol was.  Simply put, this is a hell of a story.  Two Native American sisters, one runs a bar, the other is planning to travel, somehow, to the Upper Peninsula of Michigan to their mother’s village.

It’s all done so well, the simple plot, the relationship between the sisters, the characterizations, particularly of the older, bar-keeping sister, the language, and the ending.  I am a student of endings because they are so hard to get right, and feel so good when they are, but so often do I see ones that simply do not satisfy.  This story ends on a perfectly pitched note.

I am offering all of this, not as Carol’s husband but wearing my writer/professor’s hat.

A curious coincidence needs to be mentioned as well.  At one point, the older sister mocks an arrogant teenager wielding a knife, and uses the word “mumblety-peg.”

The  title of my just published story.

Which I am reasonably sure Carol never read because I wrote it before I met her.

If I believed in some mystical forces, this would be proof.

As she was getting ready for sleep, she said she was glad to have me.

That’s as good as it is going to get.

I know that.

And it will not last

I know that as well.

But maybe the lesson here is simply to live in the moment, knowing that it offers no guidance to the next moment.  That recognition, if I can hold onto it, will be a huge help

After lunch the next day.  I  read a few more pages  of  Love Medicine, a section describing Grandfather’s dementia which in some ways  could be applied to Carol.  He has little memory, and what memory he has is long term so he confuses the past with his present.  There is one persuasive difference, however, between Erdrich’s imagined picture of dementia and Carol’s actual condition.  Erdrich says Grandfather’s loss of memory is a gain in that it enables him to forget things from his life he’d rather not remember.  Carol, however, draws from the reservoir of her long term memory things she likes to recall, such as that she was a lawyer.  In fact, she doesn’t use the past tense, she says she is a lawyer, and tonight she was talking about having to work.

For the past couple of days, we seem to have returned to a version of the two Steves.  This time it’s a little more subtle or nuanced.

First it comes on the heels of a few occasions when Carol seemed very much in the present moment, such as when I was reading to her.   During these occasions, I could easily permit myself to enjoy what is essentially a fiction or an illusion, that for those few minutes she was herself, and in being herself, she was fully aware of who I was.

But when I came home from an appointment in town yesterday, the aide said that Carol had been asking for me the whole time I was gone.  And then last night, and again after breakfast this morning, she called my name literally every few minutes.  I would respond, ask her what she wanted or needed.

She didn’t say.

I would return to whatever I was doing, reading the paper or doing something on the computer, and again and again, every few minutes, she would call out for Steve.  I stopped what I was doing, and went to sit next to her, take her hand, try to see what was going on in her head.  When again she asked for Steve, I told her I was right there.

She seemed to accept that I was Steve.  But I could not shake the idea that even though she acknowledged I was Steve, even though she indicated she understood that not only was I Steve, I was also the husband she was asking for, that in spite of these confirmations of who I was, she was still looking for some other Steve.

She would accept the present reality of me as Steve.

But in some way she was still conjuring up, and hoping to see, the Steve locked in her memory.

Her birthday is next week.  I will get her roses.  She will even in her confused state enjoy them.

But I am not sure she will know which Steve gave them to her.

I just have to live with that.

 

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