Brooklyn and Two Poems

The correspondence I have presented thus far is one-sided because my letters to her, to which she refers, were sent to her parents’ house in Old Mission during her annual summer visit there and before she moved to Brooklyn.  I have no doubt she kept them, but they remain hidden.  Among Carol’s strengths, an orderly filing system of her papers was not one of them

This post begins with a brief letter for which I do not have an envelope. It is clearly from September, 1981 as she has started taking classes at New York University.  In it she describes an early semester encounter with a professor from whom I had taken a graduate course some fifteen years earlier. 

She provides  her new Brooklyn phone numbers as well as the best time to call.  No doubt these times correspond not only to her own schedule but also to when her house-mate would not be home. .As she states in the first sentence, circumstances  obliged us to carry on our relationship through “pen-palism.”

I  wrote my dissertation at NYU on Edward Taylor, a seventeenth century New England poet and minister.  I guess she was checking up on me now that she was also attending that university.



Well, it looks like pen-palism is the going thing here despite all my protests.

Harrier is just who you said & more.  He wouldn’t let me in to the first class because I wasn’t “approved.” (By whom?)  I had the feeling he would like us all to be ordained as emissaries of the Great English Author gods before daring to tread on his carpet.

I wanted to give you my phone #: 212/624-1693.  Tues. & Wed. eve’s are good times to find me here.

And who is Edward Taylor?


The date on the envelope of the following poem is unclear except for the year of 1981, so I received it that fall. In the poem she seems to be both celebrating, and struggling with, the implications of our developing relationship.


I wrote many things & tossed them before I knew I had to write it in poetry.

w/a world of difference
and a world of similarities–
it couldn’t be any different
if I tried to put it in novel form–
instead of poetry.
Where it’s going
I don’t know–
a difficult beginning
(I sensed you waiting)
just a middle
w/little to offer
but conversation
in words
but a conversation
that has always excited me
satisfied me,
When the physical side came
it was like another conversation
exploring the mind of the panther
–my body would not be controlled–
it trembled
w/a passion unbounded by restraint.
That panther’s eyes,
though it was male,
were my eyes
staring deep into my own reflection–
the reflection
changed by the element of water
what the panther could not see
w/out it.
A poetic nature–
but also strong
very much its own.
I wondered what place I had in that reflection
because it was not just me,
but him,
at his own reflection.
And I think
w/constant reflection
what good could we possibly do each other–
each our own Narcissus
settled in curious yellow eyes
hugged by a taut cat’s body,
always ready
springs regarding every action–
Restraint not my nature–
Is this creature just a function
of my imagination–
a body that wants to restrain mine,
a curiosity that doesn’t exist?

I don’t  know when I received that poem, but my poetic response was sent in late December.  The brief letter,  mailed to her Brooklyn address, is self-explanatory.  As for the poem, it begins with a kind of self-mocking of my ambition to move up the administrative ladder, a possibility at that time.  Fortunately, I was passed over for a deanship, and I wound up working for the rest of my time at Suffolk, as I had started, as a classroom instructor on a satellite campus a much preferable alternative.  The poem moves to a recognition that our relationship was bringing me back to myself.



Still rough (the writing, not the feelings).  We’ll know next week about the “three-piece suit.”

Hope you have a Happy New Year.

See you soon.


Even before
(and if, after, it will continue)
the three-piece suit sealed
the accommodation,
the deal had been made.
Even before,
the surface had been trimmed,
the manner almost perfected,
like a chimpanzee wearing an usher’s
peaked cap,
ridiculous, yes,
but plausible.
Even before,
the disguise had worn thin,
and a hairy paw would protrude
through a frayed cuff,
or a lunatic gleam in the eye
signaled the life within
was not dead,
but only in chains of softest thread,
and then finding
an energy, at least as strong
as its own,
capable of waves of intensity,
an excitement
almost forgotten,
an all consuming gulp
from a yet full vessel
that caused the suppressed
song to reach
its own liquid
hot note
in celebration
of chance and circumstance
and fretful overtures
and scales played
to tune,
the rough melody
discovering its ebb and flow.

Constrained by time and space,
the ineffable moment snared
and worth more,
by far,
than the endless warp and woof
through which are stitched
the colorless days,
a shared rip in the web
rends the useless fabric
and asserts itself,
a healing wound,
a letting of good blood,
an unstopping of blocked passages
and constricted ways,
to be cherished,
the waters no longer flow.

But the ocean always
moves to the moon’s rhythms,
and only fools
rest content
in the full and sterile glare
of the sun.

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Late August, 1981

This follow-up to her description of  working with her family on the cherry harvest offers a meditation on woman and machine as well as a paean to her roots.  My guess is the machine in question is a cherry shaker, as she was proud of her status as the first woman shaker driver on the Peninsula.  Monk, in her closing, is a character in a series of my short stories.


I’ve been covered w/ grease & dirt & working in  the HOT orchard sun for two days trying to erase the winter’s wear on this piece of hulking technology that seems to be my responsibility.  I think there’s a story here somewhere on the strange & intimate relationship between woman & machine.  It begins w/ the ultimate emotion of frustration & digs into those stranger feelings brought about by a broken fan belt on a highly sophisticated machine that is entirely irreparable by the intuitive process. I think the story ends with the inevitable: machine continues its life span on into the future (where it belongs) & woman, in 95 degree temp. dies of HEAT.

In the cab of the cherry shaker

But Lake Michigan, in its purest form is only 15 steps from my parents’ front door & midnight swims cure most ills.  It’s 2AM now & the house &  inhabitants sleep while the lake & I ponder or perhaps I’m untrue to the lake–it always does–personification uncalled for–& I write.

If you’re into writing letters, send a letter….If you’re writing fiction instead of letters, send some fiction in an envelope–Monk’s latest tale?


This one, which is dated August 27th, has Carol writing from Lake George in upstate NY where her house-mate’s family vacations.  It opens with a reference, again, to a letter I don’t have.  In it apparently I mention the publication of a fun opinion piece I wrote on the “Personal Notices” in Newsday, the major Long Island newspaper.  And I must have responded to her critique of the chapter in my novel.  Her humorous comment toward the end of the senility she hopes to attain at  60 is bitterly ironic considering the early onset dementia that shortened her life.  She mentions her desire to write a novel, an ambition she never lost.  She started and worked persistently on one dealing with the French fur traders and natives in the 17th century and another set during the riots in Detroit.


A second reading has deciphered your scrawl–except for one word on the last page which may demand more thought before it offers up its meaning.

Hard labor is not compatible w/writing, is compatible w/sleeping, and is exhausting.  It’s only invigorating for two days and then effort is the key to maintaining an acceptable form of sanity.  Staying w/my family for a month may lead me gently toward the edge too.  I seem to thrive on isolated or semi-isolated households.

I’m at Lake George again–no relatives this time.  Have been to the city & secured an apt. in Carroll Gardens in Brooklyn.  ….I may be on Long Island again for a couple of weeks since the apt. doesn’t open up until Oct. 1.  If so I’ll give you a ring….

I can imagine it must be frustrating to follow the Personals in Newsday.  Are you making a comment on public opinions of Newsday writers?

You are right of course about the importance of sexuality.  It’s very easy for me to wander around the walls of justice when it comes to women and forget about human emotions.  Lois is in perfect character form as a prostitute.  I’m not sure what that has to do w/making love that inspires aspiration, but then it is not my novel, and to change her character  in my mind would be for me to write my own novel of someone like her and the two men.  I find more & more that I want to write a novel, but it’s that fact about myself that still stops me  The narcissistic walls of justice are sometimes too high to see over.  Or in truer terms, my own high-blown ideas don’t often make way for other people’s thoughts or a different way of seeing.

Congratulations on being 39.  I hope you celebrated well.  I’m waiting to turn 60 (a few years or more) so that I can feign senility at which point I will be excused for my earlier irrational disorder….

Take care.



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First Letters

Introductory Comments

I believe I have almost all of this correspondence, but a couple of the letters such as this one indicate they are in response to one that I have not found.  There is also a peculiar gap between August ’81 letters and the following December when the exchanges picked up again and continue with a steady flow.  I am not sure, now forty years later, why this seems to be the case.  Perhaps there are letters still hiding in the vast amount of unsorted stuff in this house.  Or it is more likely that circumstances provided difficulties, obliging us to rely more on phone calls and occasional personal interactions.  One possibility in that direction is that Carol and housemate had moved to Brooklyn, and since housemate was still a presence in the new apartment it would not have been a good idea for me to send mail to that address.

A couple of other observations.  First, Carol seems to have been the more energetic correspondent both in volume and frequency.  Second, not surprisingly, she gave voice to her emotions more than I did.  I don’t know if we are talking about gender or personality differences, perhaps a little of both.

Finally, I will offer dates from postmarks.  I adopted Carol’s habit of indicating dates as in “early Monday,” followed by “Later.”  I did the same.  For almost all of the letters, I have the envelope in which they came.  For a couple of others, I can rely on context for approximate dating.

August 3rd, ’81.

[This letter offers an exception to the dating stated above because Carol inscribed an exact date.

The letter describes in some detail Carol’s participation in the cherry harvest that summer.  She routinely did get back home to help the family with this vital chore  I suspect she also wanted me to more fully understand this element in her life  In the second half of the letter, she offers her critique, from an admitted feminist perspective of my novel in progress, which was published about ten years later by Walker as The Monkey Rope.


I apologize for taking so long to write back.  We just finished an outstandingly chaotic cherry seasons.  Frustrations & disputes among the two 9-member crews raged every day from dawn to dusk.  And there’s always a scapegoat–usually one of the loudest talkers on the crew.  Seems like every one gets to be a scapegoat for the others sooner or later–except for family members.  We somehow–perhaps because we’ve been through the heat & the monotony & the physically long hours–find other things to do & excuse ourselves from the bickering….

I read, Doris Lessing & The Golden Notebooks.  It rained so often during the last three weeks that the whole book swelled up & broke into 5 parts, 2 of which fell off the shaker & were smoothed irretrievably into dusty nothings by a 200 lb. tire.  So now I have no idea what happens between p. 182 & 319 & p. 321 & 411.  It was interesting–she thinks, or suspects, that many people’s political interests & choices are actually a result of, or at least deeply tied up w/ their emotional & personal lives.  I don’t see how it could all be separated anyway (one’s life divided into neat, concise compartments? ha)

I read Ch. 3 & your plans for Lois.  I’m still disappointed w/ her character.  She’s a strong character (w/out that sharp edge) & I can’t exactly figure out what it is that makes me think  that there’s just as strong & mysterious bond between she & Seymour as there is between she & Junior.  Of course, you can go so much further w/ Seymour.  Not that it’s bad between Seymour & Lois, but it’s always a complex issue–Am I vague?  I think so.  I think it would be more difficult to establish a mysterious link between them because I think it’s easy (I’m being harsh, no apologies) for people writing about men & women to leave the link between them at a sexual level.  Whether Lois is the victim of a father-rapist, or a prostitute by choice you’ve still left her at that sexual level.  She has potential for more personhood.  There’s something revealing in her character when she comes to see Seymour at his office–there’s desire, but there’s other  things.  What?  Her concern for Junior saves her a little bit, but what about her concern for herself?

I know you’re not writing it from Lois’ point of view.  I also know it’s very easy for me to be extremely one-sided about women in defense of them

[At this point in the margin appears “rampant loss of control over pen” next to words scratched out. The idea that her pen is an autonomous force within her appears regularly in her letters.]

However, I’d best get some sleep.  I haven’t written anything in a while & I can get a trifle long-winded in letters when pen & heart have had restrained contact.

Two more weeks here helping my brothers manage the farm back into shape & I should be rolling east again  May be a while before I see Suffolk County–2 weeks when back in NYC to find an apt. before school begins.  Horrors.  And in August too.



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A Light of a Different Nature

A Light of a Different Nature

In its previous incarnation, this blog ended on the funereal note of the death of my wife Carol from early onset dementia.  I worked it into a book,  Dementia, a Love Story, which was a finalist in the non-fiction category of this year’s BookLife competition.

I found that sharing my pain with others faced with losing a loved one to this merciless disease helped me deal with the huge hole left by Carol’s death.  In the same way, I hope this continuation will further the healing process.  In the form of our letters to each other, it will present the bright dawn of the relationship that sustained us through those dark, last days.

The Beginning

I saw her sitting there, as though she had been waiting for me, which was of course ridiculous, and yet was what her wordless glance said.

It was forty years ago.  I had paused for a long minute as I walked past the writing center in the Islip Arts Building on the main campus of Suffolk County Community College on Long Island.  As chair of the humanities division, I had lobbied for the creation of the center to help students with their writing assignments. Leaving the faculty office area, I would pass the converted classroom several times a day.

But this time, perhaps just to see how things were going with the center’s program, I strolled into the room. Behind a table that served as her desk in her role as tutor sat the woman who would become the fixed center of my life.

I introduced myself.  I can’t be certain what other words we exchanged.   In those primitive days, people still smoked, even in classrooms.  One of us might have asked for a butt or a light.  I am making that up.  But what I am sure of is that a light of a different nature had absolutely risen in that classroom.

In retrospect, I think I can surmise what I saw in her that first time.  Her face radiated gentleness, but her abundant, red tinged brown hair projected strong emotions.  And between face and hair, her blue eyes shone with intelligence.

I think now, so many years later, that those three attributes do define her.  Of course, I don’t know what she saw in me before we even spoke, but it was clear that there was something to which she reacted strongly as well.

A connection had been formed.  That connection would obliterate the obstacles provided by our disparate backgrounds, she having grown up on a family fruit farm of several hundred acres in rural northern Michigan, I born and raised in Brooklyn as tenants in a two-family house, she a failed Methodist, I a largely secular Jew.

That connection faced even more formidable difficulties.  She had come to Long Island to accompany her live-in companion of seven years, now pursuing his graduate education up the road from my college at SUNY Stony Brook.  That relationship was approaching its breaking point.

As was my seventeen-year marriage, sustained only by my concern for my two young daughters.

On that day, I don’t think either of us was contemplating leaving our troubled situations.  But neither did we resist the force of the mutual attraction, which would not be denied, and which only strengthened as we got to know each other, until we both recognized that it was stronger than any remaining scruples we might have.

We were both writers, I older and further along in that part of my career, she as a non-traditional student approaching thirty, just getting an academic gloss for her formidable natural talents on her way to becoming an award-winning short story writer.  For her, as well, the physical act of writing was as necessary as breathing.  With a pen in her hand, she wrote what bubbled up from her depths.  She simply had to write, preferably by hand although she was expert on the keyboard.

I have found a huge quantity of these handwritten thoughts on all sorts of surfaces, such as bound journals, legal pads, pages torn from notebooks, and one extraordinary paper napkin, to be described below.

Being compellingly drawn to each other but living apart, we closed the space between us with pen and ink letters.  I was reminded of that correspondence when one day not long after she died, I was searching in the closet in my office, which contains various technological detritus, for a power cord for an ancient reel to reel tape recorder, then on loan to a techie friend.    I didn’t find the cord, but I did stumble across a thick manila envelope containing a stack of letters Carol had written to me over about an eight- or ten-month period stretching from late 1981 into the next year.

Because Carol saved every scrap of paper that contained anything she might need or want to remember, whether a playbill or a reminder of a family obligation, even old planners containing ancient appointments, she would have kept my letters to her.

I found them in one of a half dozen cartons that had been sitting undisturbed on a high shelf in the garage where they were placed on the day in January of 2002 when we moved from New York to Old Mission, a short distance from the house in which her parents at that time were still living.

I now have our correspondence during what was a pivotal period in our lives.  These letters crackle with intensity, frustration, joy, occasional despair but  leavened with humor and determination.  With some necessary editing to retain narrative focus and provide context, I will be offering this correspondence in occasional posts to the blog reading world.

From Musings on a Napkin

Going through Carol’s papers, I have found that she frequently wrote drafts of letters, some of which, apparently, she never sent, as well as what appear to be journal jottings. Whatever their intended purpose, they were on lined paper.  This is the only one I have come across on a napkin.  I imagine she must have felt the need to get some thoughts down when no other paper was available.  The apparent timing would suggest that possibility.  These jottings were written as our relationship had moved into a new stage.  I had established myself in an apartment, and she, having transferred to New York University, had moved to Brooklyn with her companion, but he was often not home and was on his way to being permanently out of the picture.  Our new living arrangements enabled us to call each other more freely and to spend regular time together, so we would no longer need to depend on letters.

The Napkin

You have to think of my upbringing—raised up with beer drinkers, truck drivers, and farmers in a WASPishly small town in northern Michigan.  What would you expect from a talented country girl? To find herself in New York writing poetry and finishing her senior year at New York University, thinking about law school, having exchanged her mid-western bohemian lovers, as beautiful as they were, for a Jewish professor with two kids and a house in the suburbs….The bohemian laughs in sparkling amazement and goes to dances with a gay friend, still feeling the void of having left the irony and joy of walking away in the parking lot of an apartment complex (where he lives in separation), saddening at  the loss of connection


Four years later, when after tedious negotiations my divorce was finalized, and we had been living together in a rented house, we married and bought our own house where we lived until I retired and we moved back to her home turf, that small rural town in northern Michigan.





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Revived and Renamed

Coming soon, a continuation of this blog, now titled “Dementia, the Back Story,” presenting  in epistolary form the beginning of the love relationship that sustained us through the early dementia and death of my wife Carol.  The first post to arrive on or about Oct. 3rd.  Check back then.


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Now, Dementia, the Book


All of the posts in this blog are now gathered into a book to be published by Mission Point Pres under the title, Dementia: A Love Story, available for pre-order at Amazon.

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Thursday afternoon in the community library during my respite period.  I had contemplated staying home up in my office to either write or begin the odious chore of getting my tax material in order for my appointment next Thursday with my new tax preparer.  Because I am really not in the mood to confront that necessary chore today, and because I am pulled to continue writing my way through this extraordinarily difficult period, and because getting out of the house is always a way to recharge my batteries a bit, I am here.  The tax material will still be waiting for my attention.

Hanna has been coming almost daily, but she is skipping today. Yesterday, Nic, the hospice social worker visited.  I was glad he did.  I was going to call him to invite him out but when I came home from shopping Tuesday afternoon, I found a message from him on my land line phone.

I had been thinking about talking to him as a follow-up not just to all that had been happening over the past week, but specifically as a result  of a suggestion that my brother-in-law Ward had made.  He called me as I was on my way into town to do my shopping and we wound up speaking for close to half an hour, much of it while I was parked in front of my first stop at Burritt’s meat market.  What stood out in that conversation besides Ward’s very welcome supportive comments was a particular, very practical suggestion: I should now make sure whom I would call when I would be facing Carol’s lifeless body.  I’m expressing the idea more bluntly than Ward did, but that is what we were talking about.  You would not want, he had said, at that stressful, emotionally wrought time, to have to figure out how to deal with the practical necessities, specifically the person or agency to call. And beyond that to at least have some idea of how I wanted to handle the final arrangements.

I had thought, if I had thought about that unthinkable yet inevitable, moment at all, that I would call hospice.  I believe my Tuesday aide had suggested that idea when I told her about Ward’s conversation. That seems and seemed reasonable but would not have sufficed because at that point I would still have to figure out who should be contacted to perform the necessary end of life service of collecting the body.  Contacting hospice would, in effect, just transfer that decision to it. It would be well for me to have researched possibilities and, if possible, to have made a decision.   I surely could still call hospice, who could then take over the necessary calls, including the one to the funeral parlor service I had chosen.

Ward’s suggestion turned out to be prescient.

From that point in my conversation with Nic, and being absolutely without any experience organizing a funeral, and never really having given that process any thought, I asked him to provide me some basic information.

Which he did, including, at my request, some estimates of cost, as well as possible services that would be offered.  He asked if I would like to have more specific information.  I said yes, and he agreed to call several places of good reputation.  I had told him that my preference, as far as my thinking had gone, and although it hadn’t gone very far, it had been abundantly clear, was that I wanted something simple, small, and private.  I also intended within those boundaries to respect Carol’s family’s wishes as well as I could.

This morning, I received an email from Nic reporting on his research into the several companies he had mentioned.  I am now prepared to make a decision.

A decision that is crushingly difficult to contemplate.  I have acquired retrospective respect for all those grievers who organized the funeral I in the past have so mindlessly attended.

I have been keeping Carol’s siblings and my daughters informed.  I asked the siblings to communicate these sad tidings to the extended family.  I am aware that Danielle, our daughter, now intent on leaving her current job as well as the state of Minnesota, is in the process of long distance interviewing for a new position in Pennsylvania.  She said she would find a way, whether or not she gets the new job, to spend some time with me and her mother.

I also, in the context of pursuing my intention of getting Carol’s story collection published, contacted friends at Mission Point Press, and informed them of the turn Carol’s condition had taken.

I might send separate emails to particularly close life friends, and perhaps a few writers who knew us as fellow practitioners.

As devastating as all of this has been, as emotionally overwhelming as it no doubt has been, and will continue to be, I find a little relief in brushing off my ancient administrative tools to work my way through this uncharted territory.

Doing that, and finding the time, energy, and inclination, to keep my writing career going by producing columns, keeping this journal and from it creating blog posts, and occasionally, still, marketing my work, all of that is necessary to keep my equilibrium.

Time to leave the library.

Friday afternoon, eight days after the above.  I am in my office at my desktop, and will summarize those intense eight days.

On the previous Friday, Carol’s swallowing difficulties had increased. I stopped trying to feed her nourishment. Hanna and I talked about transferring Carol to Munson Hospital Hospice on Monday. I agreed with Hanna’s suggestion to hire a private duty caregiver, who arrived in the early evening. She was willing to stay around the clock until Monday morning although she was not sure we had that much time.

She would keep Carol comfortable, her mouth moistened, her position changed, and any pain deadened by a steady dose of morphine.

I told Danielle that now was the time for her to come for what looked like a last visit. I also kept daughters Tracy and Kerri in New York informed. Danielle set out from Minnesota and arrived Saturday evening, a little after Allison, the private duty caregiver had arrived and had taken over responsibilities.

On Sunday evening, after what were now regular visits from the hospice nurse, Danielle and I went out for dinner after waiting for the hospice grief coordinator who was scheduled to come. She was delayed, and so I informed hospice to tell her we were going out and she could visit tomorrow.

As we were about finishing our meal, my phone rang. It was Kristi, the grief coordinator. I began to apologize for postponing her visit until tomorrow.

As soon as I got those words out, she said, “Carol just died.” She asked if I wanted to stay at the restaurant while they took care of things. I said we would be home in a few minutes. Once there, when the workers from the funeral home came, I talked with them as to the best way out of the house, and then sat in the green room until they were gone.

I did not want to witness the removal itself. I had said my good-bye with a kiss on Carol’s still warm forehead, looked for as long as I could tolerate, only a few seconds, at her still very pretty face.

Danielle stayed through Monday, and then got in her car to travel back to Minnesota. Tracy flew in from New York and arrived not long after Danielle left. She provided immense comfort over the next few days as I, along with Ward and Jane, met with the funeral director and worked on composing the obituary. When I wasn’t writing, Tracy was there to talk to or just as important to be there when we were both working, she on the work she had taken with her, and I on the obituary. When the funeral director called, I put him on speaker phone and asked Tracy to listen to what he said with her attorney’s head so I got things right. I was not thinking all that clearly.

Ward and Jane helped me disassemble the hospital bed and move the pieces into the garage. I did not want to see it.

I went about informing friends and relatives.

Arrangements that had to be made have been made. There will be a graveside service. With the help of the family, I have written the obituary, and made plans for a memorial reading of Carol’s stories.

This hideous ride is over.


At ten thirty at night, I sit in the green room watching a March Madness basketball game without much interest because one team is getting thumped and the outcome is not in doubt.  I think about finding something else to watch because I am an hour or two short of my usual bedtime.

But the clock turns my attention to the hospital bed in the next room. Isn’t it time, in a few minutes, to settle Carol for the night?  To make sure she is clean and comfortable?  To climb into the bed with her lying on her side and throw my arm around her, take her hand, feel, perhaps a responsive squeeze from her, stay there with her until her breathing announces her sliding into sleep?

But she is not there.

The hospital bed is disassembled and in the garage waiting to be disposed of some way, along with all the other medical equipment associated with her illness.

I realize that for the past two years or so I have been living a fiction of my own creation that I was still living with the Carol I had loved for almost forty years, a fiction fed by occasional real or imagined responses that encouraged me to continue talking to her, to tell when I was going out to get the newspaper or the mail or upstairs to shower or that we were going to move into the kitchen for breakfast or to the dining room table for dinner, what we would be eating at either of those meals, to sit with her while first I fed her meal to her, her own hands useless, watching her swallow and drink, finish meals with her meds in applesauce, and on days certain plan how to use my respite time whether shopping or having lunch with my buddies or working in the library, and then back home again to pick up the same routine from morning to when the clock reached just about eleven at night after which I would work on my laptop for some time and then settle down myself onto the couch  a couple of feet from her bed, where I could hear her restless movements and her breathing.

But not now.

That book is closed. 

I must somehow start a new one.

Later, upstairs in my office.

I reach over to my desk on which sits the ancient, manual perpetual calendar reading August 12th, the day Carol could no longer climb the stairs up to our bedroom and her long decline began.

I turn the device’s wheels to today’s date.

And so I begin.

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Like A Body Blow

Tuesday afternoon of a lovely spring day. I notice in my journal a remark from about a week ago: Just saw a blue jay land on the table on our deck amidst the still falling snowflakes, and shake its feathers as though to say what the fuck is going on? 

The blue jay if it is still around would be happy today, sunshine decently warm, temperature about 40, snow melting.

I, on the other hand, for reasons I will set out when I get back some energy, find this lovely weather in complete opposition to my mood, not because I don’t, as the blue jays no doubt do, luxuriate in the return of spring, but because that return of spring and all it suggests is particularly difficult for me to contemplate after the events of the last six or seven days.

I am writing when I am usually resting after coming back from my weekly shopping excursion, and I am way too tired to continue.  Will pick it up perhaps later tonight.  But what I have to say must out.  And soon.

Tuesday night.  Dog snoring, Carol sleeping.  I’ve turned off the late baseball game I was watching.  It is time to uncap what has been brewing in my head.

What started last Wednesday morning is what makes this glorious spring like day hit me like a body blow.  Spring is a time when we see life waking  up again, particularly after the harsh winter we have just endured.  So while that is what, I expect, most folks are feeling, that feeling in me is crushed under the weight of an approaching dark shadow.

At breakfast last Wednesday, Carol experienced a choking episode, apparently on a piece of breakfast sausage, the same kind of breakfast sausage she has been eating for years before the onset of her disease and all the way through it.  The night before, she had eaten the usual frozen lasagna that I serve on shopping days.  The night before that, she had eaten pork chops with me.

So although I have been aware for a very long time that swallowing issues are absolutely predictable as her disease progresses, and although there had been minor signs of that difficulty, I was not prepared for the chain of events triggered by that episode last Wednesday.

That afternoon, she developed a fever of something over 101.  I called hospice, and a prescription for an antibiotic was phoned in to the pharmacy in town.  Ryan came and stayed with Carol while I fetched the antibiotic, which I administered over the next couple of days.  I also noticed even more phlegm accumulating in her throat, some of which I was able to scoop out.

I cancelled my relief aide on Thursday and stayed home to monitor Carol’s condition.  The fever came down somewhat, and she seemed to be recovering.  The cause of the fever was determined to be that bit of sausage, getting into her lung, which I learned is highly susceptible to infection. On Friday, she seemed on the mend so I joined John for lunch.  I had been serving her easily swallowed yogurt since the incident.  Because my stock of yogurt containers was running low, I asked John to drive into town with me after we ate so I could buy some more of the coconut based variety that Carol needs because of her lactose intolerance.  He came along, and on the way back he was in the car when Hanna called and I discussed with her what foods I could safely add to Carol’s diet and when I should do so.  She recommended continued caution because of the danger of a repeat choking incident. When she came for a visit, she reiterated that warning.

By Saturday, I was feeling uneasy, and felt I wanted confirmation that we were over the hump of the infection and that her lungs were clear.  I called hospice, expecting to ask for a visit from a medical professional on Monday. Hanna had told me that there would be a nurse on duty over the weekend, but to my pleasant surprise I learned that meant the nurse would come out to our house.

He did.  He confirmed that Carol’s temperature was normal and that he detected no continuing problem with her lungs.  We discussed food possibilities, such as bread, crust removed, with peanut butter for protein.  Greek yogurt because of its high protein quality.  We were looking for easily swallowed but nourishing foods.  I jotted down a tentative menu.

The weather was warming up, and my spirits were rising with it. 

But there was a warning sign.  I admit that I was anxious to see Carol on a more normal diet, so I called Chip, the covering nurse on Sunday to check with him about what I was thinking of serving for dinner—elbow pasta with pesto sauce, a dish Carol always liked, as she was particularly fond of pesto.  Long ago, she made her own. He thought it would be alright, but recommended that I cut the pasta pieces into smaller chunks.  I did, but Carol did not seem interested in them.  I switched to chocolate yogurt, and she ate most of one container decently well.  She had little interest in the protein drink I also served her.  At that point, I was not too concerned about her mixed dinner appetite since it was not unusual for her to have little enthusiasm for either lunch or dinner, and I supposed this was an occasion when her dinner appetite was limited. I had certainly observed that kind of thing before.

I was not prepared, therefore, for what followed.

On Sunday, I had picked up some Greek yogurt.  I served that yogurt to Carol on Monday morning, but she did not swallow it, nor did she have much interest in the protein drink.  She almost always has an appetite for breakfast so this was concerning.

Hanna came in the late afternoon just before Ryan arrived for our usual supper.  Her prognosis after examining Carol was devastating.  First, she found a sore on the roof of Carol’s mouth, which she attributed to acid from food being stuck there rather than being swallowed.  Then she observed a choking fit when Carol was served some yogurt.

She said that it was time to consider switching my thinking about food from providing it because it was nourishing to withholding it because of the danger it presented of a fatal choking episode.  She also, in answer to my question, indicated that the phlegm I was observing in Carol’s mouth was the result of swallowing difficulties and not the sole cause of those difficulties.  Not being able to swallow efficiently prevents dementia patients from getting the phlegm down their throats as healthy people can do.  Limiting it, as we had been attempting, is helpful, but not a definitive answer.

Wednesday evening.  Carol in her chair having eaten some of her supper.  It’s a little early for me to write, but I want to keep this section going with the hope of perhaps picking it up later after Carol is asleep.

I  understood Hanna’s concern, but I confess I was not ready to concede that we had reached the point where withholding food to initiate the slide into death had arrived.  After Hanna left on Monday, and after Ryan and I had our dinners, I swabbed Carol’s mouth as I had been instructed to do.

To my pleasant surprise, she was clearly swallowing the water in the sponge-like head of the swab.  Swallowing it without difficulty.  Ryan confirmed what I was seeing.

The next day, by coincidence Clare from Chronic Care the supervising practice responsible for Carol’s being in hospice was scheduled to come by to continue certifying her eligibility.  Hanna arranged to be there at the same time.  I deliberately did not attempt to feed anything to Carol before they came.  I wanted them to witness what I hoped they would see: Carol still able to swallow.

I had pureed some bananas, which Carol had been able to eat on Sunday morning.

With Hanna and Clare watching, Carol ate the pureed bananas.  They went down without much apparent difficulty.  The two medical professionals agreed to hit the pause button on moving toward withholding further attempts to provide food.

Just a pause button.

I know that.  And also know there is no way to predict how long the pause will continue.

Hanna was here today, and insisted on that point, and I didn’t need the insistence.  This disease has been a very effective, if harsh, tutor for me.  And I have been a stubborn, resistant, but ultimately accepting student of its hideous machinations.

Will stop here to catch my breath.

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Of Then, Now, and the Future

In the community library on Thursday afternoon. With my computer on my lap, I have just finished an edit of the post that I will publish Saturday morning.  My neighbor, a senior citizen of my vintage, sitting to my left is doing some kind of low tech work using an actual pen hovering above a piece of paper while he studies the page of a magazine.

A nostalgic and refreshing sight. 

This morning for the first time in months, Carol said my name.  She might have been a little stressed as I got her ready for the day.  For whatever reason, she looked in my direction and clearly articulated “Steve.”  Later in the day, but much less clearly, she seemed to say my name again.

A short, but meaningful messenger from the past, announcing that it is not quite dead.  Some form of me still resides in her brain, available to her under certain conditions, whatever they might be.

And to whomever, specifically, that form is directed, the me sitting next to her, or the remembered me.

I don’t, at this point, try to pin that distinction down, nor do I really care.

What I do care about, as I have written about before, is that there is some form of we still alive and, if not well, at least hanging on.

Rather than ponder the imponderable, there are practical matters to deal with. In that regard, the first thing I did when I arrived at the library today was to draft a letter to the insurance company that holds a life policy on Carol.  We took it out years ago, calling it her funeral money  And I suppose that is what it still is.

We thought then that my retirement funds would certainly cover putting me in the ground, or in the cremation furnace, but there was no similar pot of money for Carol.  Of course, the money that would take care of me, could just as well serve for her.  But, if my memory is right, Carol in her usual way wanted this matter to be taken care of in her own way.  In her own name.

Thus, the policy.

My task today was to make sure that the money would be available to whoever would be responsible for Carol’s end of life arrangements, should I predecease her.  I am now the beneficiary of that policy, and so it seems a good idea to put a next beneficiary in the event of my already being gone.

The letter I drafted to the insurance company asked that our daughter be added as the next beneficiary.  No doubt, there will be more paperwork, but this is a start. When I get home, I’ll print up the letter and an envelope in which to mail it.

One more thing about to be taken care of.

This chore leads into the thoughts I have been having about the possibility that the predeceasing might go the other way, for in spite of Carol’s being ten years younger than I, her disease might eliminate that advantage.

She might die before me.

That is a really unpleasant thought.

Sunday night.  Woke up to more snow, wet and heavy.  Driveway not cleared, road not plowed.  I decided discretion was the better part of valor, fought off the tug of entrenched habit and routine, and chose not to drive down to the store for Carol’s muffin and the possibility of picking up the Times.  The road just looked dangerous with several inches of wet, heavy snow.  Although there were tire tracks, so some vehicle had come by at some point, there was no sign of any traffic now as I waited for ten or fifteen minutes before making up my mind to stay home.  This winter does not seem to understand that we are a week away from St. Patrick’s day, followed by the first day of spring.

Had to set the clocks ahead last night, and because I got up at the usual time I lost an hour’s sleep.  That, plus  the snow, started the day off on the wrong foot.  But Carol had a good breakfast, I did the Sunday Times puzzle on line and read a bit of the paper, watched a little baseball, served Carol pork chops with applesauce for dinner, which she enjoyed, and finished the day viewing a very nice fund raiser special on PBS showing an ancient but very well preserved Tony Bennett working with the much younger and vibrant Canadian jazz singer Diana Krall in the process of making an album.  Their music was wonderful, but even better was seeing how they worked out their back and forth handling of the lyrics, and how the piano player leading a trio including bass and drums added his view of how the song should be presented in terms of the intro and pacing.

After the show ended and it was time for Carol to head toward sleep, as has become a habit, I lay spoonwise in the bed with her with my around her until her eyes closed and breathing became regular. She is sleeping now but restlessly for some reason.  I can only guess her mind is active, exploring, or remembering, or inventing.  For example, I’ve noticed a new indicator of some kind of cognitive activity. When she was listening to a piece of music, her left hand seemed to be mimicking the movements of playing the piano.  It did not look spasmodic; rather the movement was more controlled, going from left to right and her fingers, so it appeared, doing a little up and down action.  I can’t be sure, but that’s how it looked.

I do guard against reading innocent signs into something more significant, so I offer these observations to myself while admonishing myself not to take them too seriously.

And yet, the impression came to mind with an immediacy that argues for my having seen something of note.  I’ll keep an eye out for a repetition.

All of this, the going to sleep routine, the meals, the close observation tell me, as if I needed to be reminded, how much a part of my life Carol remains.  It’s the reason that after more than a year, approaching two years now, I think, at the expense of my back I still sleep on the couch so that I can hear her breathe.  There is really no practical reason for me to do that.  She is perfectly safe in the hospital bed.

But  the thought of being on a different floor overnight just does not work for me.

I am sneaking up on the topic I thought I would be working on tonight, namely, my thoughts concerning the possibility that Carol might predecease me.

I’ll try to attack it next time.

Out of time for now.  My neighbor still hard at work.  I’ll leave him to it and head home.

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Just Letting It Be

Sunday night a little after midnight.  The dog is snoring loudly, an uneven accompaniment to “After Hours” played by Gillespie and the two Sonnys, Stitt and Rollins, in my earbuds from Pandora. 

It’s been a quiet weekend with a little more snow but nothing serious.  The Times hadn’t arrived at the store when I came for Carol’s muffin, so I read parts of the paper online.  I had done the Sunday puzzle last night.  Watched hockey and baseball this afternoon and the season ending episode of Victoria tonight.

Carol just laughed in her sleep.  She does that from time to time although perhaps less often than she had been doing.   I don’t know whether to attach any significance to the change in frequency.

More importantly, it opens the door, once again,  to speculation as to what is going on in her mind to which she no longer can give voice.  But that there is some cognitive or memory activity seems beyond doubt, and trying to penetrate the mystery of that something demands my attention even though I know that I will never be able to peek behind the screen of her disease to discover what prompts that occasional laugh.  A joke?  An incongruity?  A physical stimulation caused by her movement in the bed?

I have not heard her say my name in a long time yet it seems clear to me that on some level she knows me.  Perhaps not as her husband.  Maybe as her caregiver.  Maybe not even anything as specific as that.

When Tonda left Friday afternoon, after commenting that she had had a good day with Carol, she said something like, “I’ll leave you now with your beautiful wife.”

Of course, whether or not Carol still knows that she has a husband, I think of her, even in her reduced state, as very much my wife.

Which leads me to a thought I have been having lately, namely, my reaction when people, in all good conscience, compliment me for being a good husband, for taking such good care of my wife.

I am doing the best I can to make Carol’s quality of life as best as possible.  For example, I picked up on Tonda’s suggestion, after all this time, to raise the blind next to the hospital bed, which I had kept down to keep out the draft, and then have Carol lie on her right side, so she could look out of the window at the huge lilacs on that side of the house.

She must have loved the outdoors, Tonda had opined.

Indeed, she did.

And perhaps still does.

The constant question.

How much of the then Carol persists in the now Carol?  I’ve gotten used to her new normal, grafted it, in a sense, on my memory of her as she had been.  I am holding on to that composite of the once was and now is Carol.

When I am complimented for my good care of Carol, I want to say, “But yes, I am doing this for me as much, and perhaps more, than for her.  It is possible that were Carol in a facility her care would be as good, maybe even better, than what I can offer.  At least, it would be professional. I am taking care of her in our house because I cannot imagine, at this point, being without her physical presence in my life.”

But I don’t say anything like that because I cannot imagine that anyone who has not experienced what I am living through could, despite his or her best efforts, understand. So, I just accept the compliment and say “We’re doing the best we can.”

Not, I’m doing the best I can. But we are. Because I insist there is still a we.

And I also tell myself, with some justice, I can give Carol what no nurse or other medical professional can and that is a bridge to whatever memory however faint, she retains of me and our life together.

That is no small thing.

But I still haven’t touched on the other side of the coin.  Which is I am standing on the other end of that bridge reaching toward her, so I can bring myself to her.

In deep waters.  Will pause.

Tuesday night.  The dog, after rousing herself to walk into the kitchen to slurp a drink of water from her dish, has settled into her bed.  The electric heater, set to automatic, has just turned itself on filling the room with its noisy hum. Carol is sleeping peacefully on her side.

That is the important fact with which to start this writing session.

Carol usually sleeps, rather restlessly, on her back, from which position she manages to still get her feet jammed between the mattress and the bumper, or sometimes even to throw her leg over the top of the rail.  In that position as well, she usually breathes noisily through her mouth.

But now, her breathing is quiet and she is mostly still.

About an hour ago, she fell asleep with my arm around her and my hand in hers.  We were lying together on her bed in the spoon position.  Reaching this point evolved over several stages.  At first when it was time for her to go to sleep, I leaned over the bed and held her hand.  I noticed that this contact seemed to settle her into a sleeping mode, and so I would wait until her eyes began to close.  Then, I would say good-night, release my hand and fix the blanket around her.

But standing in that position, sort of leaning toward her, was difficult to sustain for the length of time it took for her to reach sleep. I began to sit on the edge of the bed.  But that, too, was a bit awkward as the back of my thighs pressed onto the top of the lowered side rail.  I began to shift my weight toward her with my arm across her chest to reach her hand.  Again, I was not happy with that arrangement.  I did not want my body weight to come down on her and it was a bit of a strain to prevent that from happening.

Thus the spoon position, in which both of us would be comfortable, I would still be holding her hand, and the same relaxing into sleep process occurred.

None of this would have mattered if I were going to just wish her good-night, and then go about my business, just like I always used to do. But now I enjoy watching her relax into sleep.  For that moment, all is well in our little world.

When she feels my presence, she relaxes.   I stay with her like that for a while until her breathing gets regular as she drifts into sleep.  I cannot explain why she reacts this way.  I imagine she feels safe.  Perhaps a shard of memory from our past sleeping together in the same bed rises from some distant corner.  In a way, her reaction in this situation is an amplified version of what has always seemed to happen when I take her hand.  On those occasions, as well, I noticed a calming effect, and sometimes what appeared to be a reciprocal pressure, a bit of squeeze around my fingers.  I thought, then, and do now still believe, that such a response might well be more neurological than emotional.

But maybe not.

I simply cannot know.

I have decided that I don’t have to.  What is more important is how I feel about these occurrences, particularly when I have my arm around her and hear her regular sleep breathing.

At those times, I am holding on to a memory.  Or more precisely, I am recalling that memory.  And, I too, for those moments, feel at peace.  I know nothing about our situation has changed.  She will not miraculously get better and be the person she was.  That is not going to happen.

Yet, in those moments, without conversation, it is as though we have agreed to just live in that moment and not ruin it by burdening it with analysis or expectations or regret or hope or anything else.

Just let it be what it is.

And that is more than good enough.

For it establishes a way for me to deal with the perplexing and frustrating task of living with what remains of the woman who has been so important to me every day for almost forty years from the beginning of my middle age to where I now sit in my senior years with the prospect, perhaps, of outliving her, and so face my own end alone.

And so with due apologies to Paul McCartney, without asking any help from Mother Mary, with no attempt to sing the line on key, but with a bit of Brooklyn emphasis I insist that I will just damn well let it be.

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