Toward the Light

Thursday night.  Christmas has come and gone.  Carol and dog asleep.  I have just finished cutting about five hundred words off  a story so that it almost slides under the word limit of the market to which I want to submit it.  I figure I’m close enough, and there is no more fat to trim.

As always, I enjoyed the pruning process, which is where the necessary craft in writing is usefully applied, where the writer must remove himself or herself from the product being produced and attempt to see it as readers will.  That is a hard learned skill the application of which is a source of satisfaction.

We are getting through this holiday decently well.  My relief aide schedule had to be rearranged  because both Christmas and New Year’s day fall on Tuesday.  Nothing much will be open on either day, not stores, or the library where I sometimes work.  We switched my Tuesday aide to Wednesday after Christmas and to the following Monday before New Year’s day.  Today, I had no one come because of a vacation issue with my Thursday aide.  I could have perhaps agreed to a replacement who had never been before, and that just didn’t seem worth doing

Tomorrow, I’ll have my usual lunch with my guys.

The holiday season will soon be in the rear view mirror. We are on the other side of the winter solstice so even though we are just entering the long northern Michigan winter, snow on the ground and more to come, I prefer to think that we have turned the corner and are heading toward the light.  It may be distant, but each day when the sun hangs in the sky a little longer is a positive.

I try to convince myself that this meteorological fact will somehow have some parallel in my life.  I cannot, literally, move out of the darkness of Carol’s disease.  No increased sunlight or metaphorical light can accomplish that magical feat for me.  But I’ve never been satisfied with the status quo, whatever that might have been.  I always believe, whether with reason or not, that things will somehow get better.

And there are signs that may be the case now.  In several ways, I am experiencing more people interactions, both with Carol’s family, with my daughters, albeit  long distance, and with a variety of respondents to my newspaper columns, those mostly of the digital variety.  It seems as long as I keep making myself available one way or another, people will respond.

And that is a very good thing.

Friday night, dog snoring on the floor to say all in her world is just fine.

Sent an email to my lunch companions containing a link to a review of The Penguin Book of Hell  in the New York Review of Books.  I thought they would be interested in that subject as we had touched upon it this afternoon as tangential to our discussion of morality. Our lunch time conversations do move between the largely inconsequential to the serious. But that is not why I mention this email.  I saw that it went out under Carol’s name because  the periodical’s account has been in her name for some years from the time she renewed it.

Renewed it for me.

She never read that periodical whereas I’ve been reading it most of my adult life.  Just one more of so many reminders of the care and respect we extended to each other.  I recall subscribing to Scientific American, which I don’t read,  for her.  And so it went.

And now I’ll do what I can for as long as I can for her.

Sunday night after midnight.  Spent the day watching a lot of football between caregiving responsibilities.

Carol tried to become interested in football.  We would sometimes watch games together, and I would, at her request, explain the fundamentals.  Terminology was one difficulty.  Why was a play called a down?  There is no answer, any more than why a pitched ball is sometimes called a “ball” and sometimes a “strike” whether the batter strikes at the ball or not.

But she just could not get interested enough to learn enough to share my enthusiasm.  It wasn’t, as one might guess, that gentle soul that she appeared to be, she objected to the violence of the game.  No, not this woman, who thoroughly enjoyed watching two fighters beat each other into submission in a boxing match.

Perhaps it was the lack of constant action, so many pauses between plays, and each play often taking no more than a few second.  In this regard, she was beginning to show some interest in fast moving games like hockey or soccer.

She would watch baseball with me, and root hard for the Detroit Tigers.  I imagine her interest in this sport was at least in part associated with her father who was a fan, and who was, so Carol told me, named by his father after the famous old time pitcher Walter Johnson.

Her favorite sport, though, was basketball, and here the reason is clear: she had as a girl enjoyed playing that game, remembering as she reminded me more than once that she had been captain of her team in school.  If we found a woman’s basketball game to watch, she would settle back and enjoy it.

For those who enjoy competition, and Carol in her way, certainly did, sports is an acceptable outlet. Carol’s ambitions as a writer was just another expression of her innate competitiveness.

I, too, confess that I am more than a little competitive.  I do like to win.

But I can say with honesty we never competed with each other.  As I write this, it occurs to me that statement includes any form of competition, be it a game of checkers or scrabble.  It could be that Carol just did not enjoy those kinds of games although I certainly do.

As sugar sweet as it may sound to say, the answer might just be that we just wanted each other to do well in whatever we were doing.  In games with winners, there have to be losers.  And just perhaps we did not want to see the other person lose.  As corny as that sounds, and although I have never thought about this question literally until this moment with my fingers banging down the keys of my laptop, it may well be true.

There are different kinds of light, those provided by sun or moon, those captured in metaphors of hope emerging from darkness, and those that memory shines on those whose lives are so inextricably intertwined with our own.

At the center of all of these, for me, is Carol.

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Friday night.  Carol in her chair, the dog sleeping on the floor.  Snow falling as befits the official start of winter.  Even though I spent some money to get my old snow blower repaired and ready, I decided to contract with the landscaping company that does my fall cleanup to take care of snow removal.  I just don’t want to have to deal with that issue.  If this deal gets too costly, I still have a reliable snow blower.

This is the start of an extended period of isolation, longer than my usual weekend break, because this coming Tuesday is Christmas day, and although I might have been able to pay extra to have my relief aide come, if she were willing, I chose instead to switch her to Wednesday.  I usually do food shopping on Tuesdays but stores won’t be open.  Nor will the library where I sometimes go to work.  So, I just moved everything to Wednesday.

Not a happy prospect.  But Ryan is coming for his usual dinner Monday night, and rather than plan on our take-out choices I bought a petit roast.  I haven’t cooked one in quite a while, and this seemed like the right time.

Otherwise I guess I’ll spend more time writing and reading.

And that is not a bad thing.

Saturday night a few minutes after midnight.  Just finished sitting with Carol, holding her hand, as she drifted off to sleep.  As I settled into my chair, the dog decided her day was also over and strolled to her bed.

The first day of the long stretch between relief aide visits leading up to and past Christmas.  A little snow on the ground, just enough to please those who believe the holiday must be white but not enough to pose a problem.

I guess kind of the best of both worlds although I could do without both.

The day went by easily and fast because it was filled with digital contact with my daughters.  I hadn’t heard from Danielle for a while and so I sent her a text to which she responded after a while, and we caught up with each other messaging back and forth.  I sent her a picture of the 1998 ornament on the little artificial tree, and she responded that she remembered making it.

As much as I would like to see her it seems a visit home for her is still a ways off.   A piece of music from Interlochen Public Radio provided the impetus for me to get in touch with Kerri and Tracy, as well as including Danielle in the ensuing messaging.  The station played a track of a klezmer band doing its version of The Little Drummer Boy.

I was perplexed.  I couldn’t figure out whether I was more irritated or more amused by the extraordinary marriage of Jewish musical style performing a tune celebrating the birth of Christ.  Klezmer music is upbeat and happy, played at weddings and other celebratory events.  To hear it employed for this Christmas song was just weird.  There is no other word.

So weird that I thought I’d share it with my daughters, two raised in Jewish households, and one in the Carol and Steve combo.  Religion was not prominent in either of those households.

Of course, I would have loved  to be able to  talk to Carol about this musical experience, but she had slept through it and in any case would have only been able to offer a small response, a smile, or a frown, or perhaps a word or two.

But whatever it would have been I would have been happy to receive it.  I’m pretty sure she would have been ambiguously amused.  Klezmer music is hard to resist, and she wouldn’t have approached this performance from my more complicated perspective.

As it turns out, and as I learned later, Tracy was preoccupied and so did not respond to my message.  Kerri, on other hand, did and we discussed it through a number of messages.  We first checked to determine if the klezmer band is in fact a Jewish band.  It is.  We agreed the track was weird, not just strange, or different, but requiring a stronger descriptor.  Weird will do.

To share the music, I found a YouTube version by the same band.  That version of course has images, and the images, in cartoon figures, emphasized the religious message of the birth of Christ, which is not as prominent in the song as heard but not seen.

Adding those images sealed the deal for Kerri and me, as we agreed that whatever the band’s motive in producing this track was, the result was disrespectful to both traditions.

And yet, at least for me, that judgment is offered with a lingering smile.

Christmas eve after a good dinner featuring the roast with Ryan. Carol asleep in her chair, the dog as usual stretched out on the floor.

I had trouble finding music to listen to today, even on the classical stations.  I have no objection to Christmas themed music but what was offered today just wasn’t that interesting.  Ditto popular music with somewhat less tolerance because, well it’s popular music made primarily to cash in on the holiday and is just otherwise not that good.  When I heard the fourth or fifth version of Rudolph, that time by Dean Martin, I had had enough and put on a CD of Pavarotti doing serious holiday music. I could listen to him sing the alphabet song.

Carol seemed indifferent to the music until she heard Pavarotti singing Ave Maria, and then she perked up.

During the afternoon an unexpected visit from Jane and daughter Marissa bearing gifts, followed by a long overdue catch-up conversation particularly with Marissa who will be finishing college in a year.

That socialization followed a weekend of long distance parenting with my daughters.

With Kerri, as described above, messaging about the klezmer band playing Christmas music, with Tracy a phone call later about  various issues that she was dealing with, for which I served as a sounding board and one person support system, with Danielle the next day, an extended conversation concerning a life decision she faces, for which  I was not so much as a sounding board but rather a source of fatherly advice.

Three daughters, three different interactions, all of them filling my usually isolated weekend with the reach of long distance interactions.

These interactions turned my head toward the future, reminding me of the ongoing parenting roles available to me, valuable in themselves, but more so as a mechanism  to help me break my brooding chain to the lost past with Carol.

And just as important as breaking that chain is the strengthening of my resolution to continue my caregiving role with Carol by putting it into a larger context, one that extends beyond the possible limits of those caregiving responsibilities.

Just trying to keep my legs underneath me and my head on straight as I travel along this unknown road.








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The Persistent Past

Wednesday night after a busy day, starting with my going to town for regular blood work while neighbor Wendy stayed with Carol. While I was out, the podiatrist visited to cut Carol’s toenails, and then after I returned Hanna arrived for her weekly visit.

 Carol is still in her chair, and I will need to move her to the bed in a a little while, so I will just get something started.

I sleep on the couch near Carol’s bed.  Every morning I go upstairs to shower and change my clothes for the day.  I have been doing this for quite some time ever since Carol was no longer able to climb the stairs and we were both sleeping on the couch before I ordered the hospital bed for her.

As routine as this trip upstairs has become, my sensibilities are still shocked, like a splash of cold water in my face, as the reality of the fact that never again will we share that bedroom while it remains exactly as it was before.  Carol’s robe, which she no longer wears, is still on the hook on the door to the peculiar little closet that has been carved out of a corner of the room.  Next to her dresser, neatly sitting on the floor, are her winter boots, and next to the bed, her slippers, pink like the robe for which it was bought as part of a set.

I could go on and catalogue other item from our previous lives together in that room, but the point simply is that the room looks exactly as it used  to.


The bathroom the same. I have not removed her towel from the towel rack, or the economy size load of her Q tips from the shared closet that served as our medicine chest, or the glass bottle, sitting on a shelf across from the sink, blown by her former boyfriend, a relic of a failed relationship that we rarely discussed.

The entire upstairs is like a museum.  To remove any object would be, it seems to me, a desecration.

A start.  The well is dry for now.

Tuesday night after a day that began with some good news.  An editor at a university press whom I queried a couple of days ago about Carol’s story collection wrote to say she would take a look at it.  These days even getting one foot in the door is difficult.  I have no doubt the collection is well worth publishing, and hope this editor agrees.

Besides acting as Carol’s agent, I’ve been spending more time pursuing my own writing career, sending out queries for my unpublished work and also writing columns for my new once a month–soon to be twice a month–responsibility.  This is healthy for me.    I loved teaching, got satisfaction as an administrator, but at the core I saw myself as a writer who did other things to pay the bills.

In my last writing session I was riffing on my two bedrooms: the one Carol and I used to share, and the makeshift sleeping arrangement now in the living room.  Going into our former marital bedroom for fresh clothes draws me back to what is lost.  That motion is constant like the tide on a beach working its way up the sand before withdrawing again, the back and forth repeated endlessly.

That might work for the tide, but it’s not a comfortable way to live.  I need to feel something that represents movement away from that dip into the past upstairs and the return to the present downstairs  every day.  The same back and forth holds true for the times I work in my office next door to our bedroom where my new desktop beckons although I do most of my writing and other computer work on my laptop while sitting in my armchair across from Carol’s bed.

My life as a writer provides that forward thrust away from the untenable past.  True, it is an element from that past but continuing it now is like walking away from that beach, perhaps after spending time in the ocean waves.  You can’t stay in those waves.  You either let them drown you, or your break away from them.

Focusing on writing, both producing and marketing is a way for me to free myself from the clutches of the pull between the present and the very intense connection to the past.

I don’t at all regret or resent assuming my caregiving responsibilities and intend willingly to continue them as long as my strength permits me.

But I do not want to lose myself in them.

Sunday night approaching midnight.  In the absence of Masterpiece Theater for my usual television viewing I watched a football game.  Having played some football myself, and having been a lifelong fan, I can watch any game that is competitive enough to hold my interest.

Yesterday evening as we ate supper, the radio, as usual, was tuned to the Interlochen station.  As is inevitable this time of year, that station’s programming was immersed in the holiday season.  However, the program that came on as we ate offered an interesting variation by presenting an hour of Hanukkah themed music, even though that holiday had already come and gone.  What made hearing that music yesterday at dinner a little odder was the fact that during the afternoon I had retrieved the miniature artificial Christmas tree, strung wit blue lights, that we have had for at least twenty years.  I can pin its age to that minimum with assurance because one of its ornaments, fashioned by our daughter, is dated 1998.

Our piano sits at the intersection of our dining room and living room.  The radio had been on one side of the instrument closest to the living room.  I moved it  to the side of the piano farthest away from the living room so I could place the tree on its spot.  I plugged in the lights and after lunch wheeled Carol over to the tree so she could see it, and she responded with an appreciative smile.

So, last night at supper, the radio playing Hanukkah themed klezmer music was on one side of the piano while the little Christmas tree with its blue lights was on the other.

A perplexing, almost jarring juxtaposition of the two traditions to which neither of us adhered with much intensity.

And a not unpleasant intrusion of the past, an idea, perhaps, worth exploring in more significant ways looking toward the future.

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And She Said “Thank God”

Thanksgiving day was quiet.  I expected to get a dinner delivered from the Methodist Church community feast as that has happened in the past, as well as one from Brad and Amy who have thought of us on these occasions. We did receive both. We had the first on Thanksgiving, and the second on Saturday. 

For some reason, this Thanksgiving I remembered one many years ago when Carol suggested we have lasagna.

Which we did.

And shocked my two daughters although I doubt either now remembers.  And I cannot recall whether they shared that meal or more likely I just told them about it.

Nor am I  sure why we made this culinary choice other than to suggest that perhaps neither of us wanted to deal with a turkey and all the usual side dishes.  Also, thumbing our noses at conventional behavior was probably part of the motivation, as we used to have our chocolate mousse before the main course when we ate out at our favorite spot on Montague Street near the Promenade in Brooklyn.

In any event Carol’s appetite was good for both of this year’s very typical dinners.

Her appetite has improved because Hanna, the hospice nurse, ordered atropine eye drops to dry up the phlegm that has been accumulating in Carol’s throat.  As counter intuitive as it is to use an eye medicine for this problem, it works.  I apply a couple of drops onto Carol’s tongue twice a day, and the phlegm issue is largely eliminated.  I have to be careful to make sure that the drying out process doesn’t work too well and begin to interfere with regular urination.

Monday night after a good day.  Carol ate well all three meals, laughed from time to time, and slept less than usual.  Ryan joined us for a pizza supper, which reminded me how much I miss Papa Nick’s New York pizza. Mentioned that to Carol and she seemed to agree that the loss was incalculable.

The other morning as we were getting ready for the day, Carol said, in the plaintive tones she sometimes uses in articulating this word, “Steve,” uttered with a look on her face that indicated something was bothering her, or perhaps scaring her.  As I was standing right next to her bed, I took her hand, and said, “I am right here, Steve is right here,” and gave her hand a little squeeze for emphasis.

“Thank God,” she replied, articulating those two words quite clearly.

I’ve been down this road so many times before, it is both a little tiresome to repeat  the obvious question but necessary at the same time.

Did she connect the physical me with the Steve she was summoning? That her response “Thank God” seemed so heartfelt only adds to the significance of the question.  It is good, of course, that the Steve in her head, whether connected to the Steve holding her hand or not, is somebody she still feels bound to, someone whom she can call for when troubled.

But here is the recurrent dilemma.  Perhaps it is not such a good thing after all because it reinforces the idea that we are still suspended between the then and now heading toward a future at which point the then might disappear, at least for her.

It will always stay with me.

I don’t want to leave it, and I cling to every instance when it reasserts itself, cling to it while acknowledging that doing so is, in the long range view, futile.

A start.  Much more to explore with no hope of finding a comfortable resting place.

Sunday night.  A cold wind blowing outside.  Carol asleep under the new blanket I ordered online for her on the advice of Hanna who thought the afghan I was using was not warm enough because of its loose weave.  Carol and I have always had very different thermostats.

Have not been writing in my journal that much this past week, not because of any problems, but rather the absence of difficulties providing me with time that I have decided to devote to my writing career.  I am aggressively marketing two unsold novels, and writing my columns as ideas occur to me.  And now, once again it is late, and so I will just try to pick up where I left off, hoping to spend a good writing session on it.

The “it” was provoked by Carol’s response to my insistence that Steve was standing right next to her bed holding her hand to which she replied, quite clearly, “Thank God,” raising the continuing dilemma of how to deal with such emotionally fraught moments.

Of course, one part of me is delighted for a couple of reason.  First, the answer in its clarity illustrates a good level of cognitive functioning.  As new as I am to dementia, I have no measuring stick in terms of movement up and down along a scale of cognition other than the everyday observation that there will be good days and not so good days.

In that regard, recently I have not seen much fluctuation.  It is true enough that Carol does not often articulate clearly enough for words to be apparent, but occasionally she does.  And perhaps more to the point, she seems these day more responsive to direct questions that require a yes/no response, such as “Are you hungry,” which sometimes elicits a strongly positive response.  In addition, she is laughing more at particular things I say, sometimes comments directed at the dog over whom I occasionally trip, or just old dog that she is, decides to plop down right in the path of the wheelchair.  And, finally, in this brief survey of her cognition, I am fairly well convinced that she listens intently to the music I have playing throughout the day.  I have asked her from time to time whether she is listening, or whether she is enjoying, the music and she usually responds in the affirmative.  I have also seen her moving a foot in time with the rhythm she hears.

So from that perspective, her ‘Thank God” response fits that pattern.

But it also raises that other bothersome issue, namely, whether or not she connects my name with my body.  There is no way to get a good read on that.  I push sometimes, but do not get a definitive answer to that question.

Which in some ways is quite important..

Because it underscores the tension in my situation between knowing I have to let go of my sense of Carol as she was and my not wanting so to do.

What occurs to me as a way to explore this tension is to focus on  my moving between our upstairs bedroom and the couch on which I now sleep.

That will be for next time.


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Wednesday before Thanksgiving.  Serious cold weather arriving perhaps driving temps into single digits. 

Because I have been spending an inordinate amount of time working on my next column, I have a lot of ground to cover to catch up.  I’ll begin where I left off with Clare’s suggestion that I consider signing up for hospice services.

The word “hospice” suggested end of life to me and that is why my initial reaction to Clare’s mentioning it as a possibility for Carol was to want no part of it.  When first I realized how serious Carol’s illness was and at that time someone mentioned hospice for her my mind jumped to final arrangements.  I even got in touch with a neighbor whose husband had recently died suddenly from a heart attack to talk with her about whom I should be talking to.

About final arrangements.

For Carol.

Because of the suggestion of hospice.

My original understanding, perhaps from media sources, was that hospice  was a prelude to summoning the undertaker, a transition period when a dying person was made comfortable.  At the time, hospice was first suggested to me for Carol I heard that to be eligible the individual had to be diagnosed as having some six months to live.

Thus the thought that I should be thinking about arrangement.

My neighbor said she would put me in touch with the funeral director she had worked with.  I said fine.

I didn’t follow up, nor did she get back in touch.  Perhaps she was waiting for me to take the initiative to proceed with preliminary discussions.

It was wise of her to wait on me because I was not ready so to do not only because of my  obvious emotional resistance to the idea, but because despite Carol’s cognitive issues she was quite obviously in good shape physically, a fact routinely confirmed by the medical professionals who on occasion saw her.

That is all background to Clare’s bringing up the idea.  She made it clear, however, that I was not to concern myself about that six month mortality requirement.  I now know that Medicare requires an assessment of eligibility in order to pay for the services hospice provides.  Exactly what the basis for eligibility is remains a mystery to me, but it certainly does not involve a six month prognosis.  Once eligibility is established it is reviewed periodically.

In any event, having understood that my old understanding was wrong, and  because Clare emphasized the services that would be available to us at no cost I agreed to at least explore the idea and Clare said she would set up an evaluation session to determine if Carol was, in fact, eligible.

Hanna, a nurse from Heartland Hospice came the day after I called.  She did the usual check of vitals, talked with Carol, I imagine to get an idea of cognitive functioning, saw that Carol’s right arm was held stiffly to her side and resists having it moved, which makes dressing and undressing a bit of an issue, none of that coming as a surprise to me, of course.

Hanna had me,trace as best I could remember the onset and progress of the disease.  She inquired about what help I was now getting.   She then announced that Carol was eligible for hospice, verified that I wanted to enroll her in it, which I did, as I now understood that hospice is a kind of Medicare funded insurance program.

Got this difficult topic started.  Will continue next time with the nuts and bolts.

Sunday night, the end of the four- day Thanksgiving weekend.  Watched less television tonight because Poldark’s season ended last week.

The most important service hospice offers is that Hanna will visit once a week.    I am  happy to have regular visits from a medical professional.  I checked with Chronic Care, Clare’s practice that has been supervising Carol’s medical condition, to ask about coordination with hospice.   It seems hospice is now in charge but that Chronic Care will check in every three months to verify that Carol remains eligible.

Although I do not now know, nor care particularly to find out what criteria made Carol eligible, I cannot imagine why she would lose that eligibility.

Some miracle improvement perhaps?

One should not try to find rational answers to the rules established by insurance companies, private or governmental.  Just go with them.

Besides Hanna’s regular visits, hospice will also send someone to the house whenever a situation warrants an immediate intervention, and that too is a comfort.

Hanna is a case manager, so all issues and services flow through her.  Medicare, through hospice, pays for Carol’s meds, and Hanna will need to stay on top of keeping me supplied since they are dispensed in a fifteen day supply as opposed to the 90 day supply my employer based insurance provides.  She will also put in orders for  care items, such as hygienic items, or liquid thickener, that I have been buying but will now come to me cost free

Also available from hospice are relief aides.  Since all hospice services are paid for by Medicare, I could save considerable money by replacing my current relief aides with ones from hospice, but  I declined to do so because I am well satisfied with the ones who have been providing that service for me for quite some time, a year or more, and I did not want to go through the process of working with new individuals.

I did contemplate replacing one aide to save that expense, but Hanna informed me  that hospice aides only provide bed baths, which my current aides provide.  They would not give me the block of free time I need.

Whether or not there was any truth that shaped my original foreboding about hospice for Carol,  I am relieved and pleased to see that hospice has turned out to be so supportive without any of the negativity I had associated with it.

I had been handling this situation pretty much on my own.  I now feel that although the disease will continue to do what it does, a support team now has my back and will be there to help me deal with whatever difficulties will inevitably arise.




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New and Newer Normal

Friday night, wind howling outside, snow already on the ground, winter knocking at the door.  But at least the phone has stopped ringing Election Day having come and gone.  This is not the place to chew over the results, just glad it’s over.

Welcome distraction from  all the political noise came from  reading the reprint  of an article from the 2007 issue of The New York Review of Books. The article was a review of books about the founding of Jamestown.  The reviewer was Edmund Morgan, one of my main secondary sources for my dissertation and I was always immensely impressed not only by his scholarship but the clarity of his prose, a pleasure to read.  Reacquainting myself with him was like getting back in touch with an old and valued friend.

This morning as I stood next to Carol’s bed, she said in the most plaintive tones “Steve.”  At least my memory now some eighteen hours later tells me that was her tone.  I can recall her expression, but I hesitate to label it lest my emotions intervene, but I will say it looked troubled.  About what, of course, I have no idea.  I believe I had just said my usual good morning and perhaps started, as is my wont, to chatter about the breakfast menu she would soon be offered.

Hearing my name, in whatever tone of voice, accompanied by whatever facial expression, in whatever circumstance, however everyday or not, whatever the context , always provokes a strong but ambivalent response.

On one level, I am pleased my name is still in her memory.

On another, I have no way of knowing whether she associates that name with me as I stand next to her.

I tried to clarify that point.

For her.

And for me

“I’m right here,” I say.  “Steve is right here, as he always is.”

She does nor respond either verbally or with a change of her expression.

I go on chatting about the upcoming breakfast, the usual toast, breakfast sausage, juice, a fruit of some variety.

I suppose one day I will no longer hear her call my name.

I’m not going to dwell on that unpleasant eventuality.

Better to think about the weather.  Will I be snow blowing tomorrow morning?  I have no place I have to go this weekend, nor do I expect any visitors, so the weather is no great concern.  I’ll just listen to the wind and let it lull me into sleep.

Monday night.  Carol asleep.  The dog snoring.

Winter arrived over the weekend.  I woke up to a snow covered driveway Sunday morning.  Only a couple of inches so I didn’t think it would be much of an impediment for me to deal with on my way to the store for Carol’s muffin and my Times.

I was wrong.  Underneath the thin layer of snow was a coating of ice.  I could not get past the end of the driveway where it grades up toward the road.  At that point, the car just slid sideways.  I tried a number of times giving myself more of a running start each time until I managed to sit on the edge of the road.

On the edge.  Not on it.

It would be criminally stupid to back onto the road without stopping to make sure the way was clear.  As it turned out, it wasn’t.  Cars coming one at a time from north and south.   When finally the way was clear I tried to back onto the road.  But lacking traction I went nowhere.

There was nothing to it but to put the car back in the garage, fire up the recently repaired snowblower and roll it out onto the driveway.  It managed to take the snow off and just enough of the ice so that when next I reversed out of the driveway I could get up to the top of the driveway, pause, and then onto the road.

Which itself was covered in snow and ice.  The four and a half mile drive to the store and back took at least twice as long as usual, as I kept my speed down to between 35 and 40.

Which almost seemed a bit too fast.

But I was dealing with conflicting pressures.

I did not want to leave Carol much longer than usual.  But I also didn’t want to risk an accident.

Now, I’ve been dealing with these roads in this kind of weather for sixteen winters.  Ordinarily, I am confident and comfortable.

Not this time.

Because I could not permit myself to get stuck or worse. Carol was alone back in the house in bed.  She cannot get out of bed to the phone, nor would she be able to use that device if it were within her grasp.  I would not be able to call her, nor would she be able to summon help if she needed it.

As usual, I know I was not being rational in that my concern for Carol was exaggerated.  Short of my being rendered unconscious, I would be able to summon help for her.  Yet, I still found myself tense as I navigated the ups and downs and curves of the road.  I was especially alert to the occasional oncoming car who might not be as careful or as experienced as I and so a head on collision was not beyond possibility.

I pulled into the parking lot outside of the store, a little surprised that there were several other cars there, more than I would have expected on a bad weather day.  But this is northern Michigan where people are not easily deterred from going to where they want to be.  I bought Carol’s muffin, and the Times, exchanged pleasantries about the early winter with the clerk as I checked out and drove back still much more carefully than usual.

Not a bad thing.

And I was more than usually happy to get back home to ask Carol if she missed me.

I don’ remember what she said.

It doesn’t matter.

Tuesday night after a troubling day.  Carol continues dealing with accumulated phlegm, resulting in much coughing and a gurgling sound as though she were drowning.

It was worse yesterday, much worse.  At one point, I gave her a little water, thinking, hoping, that it would somehow do some good.  What it accomplished was to cause her to spew out a mixture of the water and the phlegm.

This was worrisome.  I didn’t know if something serious was going on.  I checked her blood oxygen, found it to be 98%, a very good reading, but I wanted more support so I called Chronic Care and spoke to a nurse.  She asked me the color of what was spewed.  Clear, like water, I said.  Any sign of fever.  No, I replied.  And then, since this was someone I had never spoken to before, questions about the history of this problem, which I recounted to her.

By this time, Carol seemed to have settled down somewhat.  Less coughing, little gurgling.

The nurse said she would look into seeing what else could, or should be done.  A little later,Chronic Care called to say Clare, the nurse practitioner who usually sees Carol, wanted to come tomorrow morning.

Pizza supper that evening with Ryan was almost as usual, except Carol had little appetite and dozed off without eating much.

The next morning at breakfast, she ate with better appetite.  Still some sounds coming from her that I did not like.

Clare arrived, checked blood pressure, listened to her lungs, announced they were clear, recommended I begin again to give her Claritin, which I had stopped administering a while ago when the problem seemed to have mostly disappeared.  Clare said it would be good to suction out the phlegm but that cannot be done in the home.

Then, she said, she wanted to have a serious talk.

About hospice, its advantages.

I listened and agreed to an evaluation.

But there is much more to be thought about and written about on that subject, so as it is beginning to get late, I’ll tackle it next time.

The new normal for winter driving and perhaps a newer still version upcoming.


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Thursday afternoon in the community library, where I have not been for some time.  As I turned onto the road leading to this building I passed on that corner the site for the new library, and there I saw that construction had started perhaps trying to get a head start before winter sets in.  That new facility will certainly be a boon to our community.  The library in its own space will be able to stretch itself with more shelving, a community room for speakers, and so forth.  On the down side, perhaps, will be the students at the new charter school now occupying this building will not be able to walk to the library as they now can, and that lost of immediate contact and familiarity with a library is not inconsiderable.

This morning Clare, the nurse practitioner who comes every three weeks or so,  checked Carol and found her  to be in fine physical shape, and she also remarked on Carol’s apparent cognitive improvement.

Which accords with my own observations as well as those of others who have seen Carol over the past weeks.

It seems, then, we have settled in to a period of relative stability.  As I am a creature of habit, although one who deals with unexpected changes, good or bad, with decent equanimity, I am content to ride this period out for as long as it lasts.

However, on the way out today, Clare asked me if I had plans for a trip to New York in the coming months.  She recalled my aborted intent to attend my grandson’s bar mitzvah last April, thinking that transporting Carol to the respite facility had turned out to be too expensive but now with her wheelchair, she could  more easily, less expensively, be transported in a van supplied with a lift.

Perhaps so.  But I explained that travel arrangements, and the costs thereof, were only part of the problem.  My continuing hesitation was emotional, and frankly I don’t know if I am ready for a week’s separation.

Which I know, on one level, would do me some good.

But another, I imagine would be difficult.

Would I feel guilty that I was somehow neglecting my responsibilities?

I don’t think so because no doubt I would have taken care to be sure she would be well attended to in my absence.

Would I think nobody else could replace me?

A ridiculous thought.  Three times a week I leave her in the care of my relief aides.  True, those times are for only a few hours.   Yet, all three aides do a fine job. In that respect, I am eminently replaceable.

But, and this is important, those hours do not include potent emotional periods of going to sleep, rousing in the morning, and in a counter intuitive way, that period of sleep when I lie within a couple of feet of her, when I have held her hand before stretching myself out, and taken her hand upon rising and greeting her in the morning, when during the night I have heard her breathing, or moving about in the bed.

Irrational concerns?

Yes, but who ever said irrational concerns were irrelevant?

Maybe I need to take such a trip once and see how well I and she do.  If successful, it can be replicated.

I do need to find out.

But dealing with the impending winter comes first.

Come spring, we will see.

The library is very quiet.  I might be the only patron now here.  Time to pack up and head home.  As I close my laptop into its case, I look up and see kids, maybe eight or  ten years old, lined up under the supervision of a teacher about to march out of the library and back to their classroom.  For all the advantages the new library building will offer, I will miss seeing these young people, their presence surrounded by books somehow suggesting hope for the future.

Monday night before election day.  Political robo calls kept my phone ringing with  increasing frequency all weekend and into today, the last call arriving well after supper.  As usual my caller ID alerted me to these calls and so I didn’t bother getting up to answer them.  But I noticed that my voice mail was not picking up the calls, and then I remembered the scheduled power outage starting after midnight and into Saturday morning.  When the power came back, my answering machine had defaulted to its off position.  I switched it back on just in time to catch another call.

That power outage somehow also seemed to have fried the motherboard in my new desktop.  At least that is what the Dell tech diagnosed as the reason the unit would not power up.  A Dell technician will install a new motherboard on Wednesday, so I’ve been told.

The falling leaves have opened up my view of the  East Bay again, a sliver of water more gray than blue now visible.  Some trees haven’t defoliated yet, so the view will get better in the next week or two.

Which also means that shortly I will be looking out over a blanket of snow as winter is knocking at the door.

It is something over a year since I started keeping this journal and posting weekly blogs from it.  I began it for several reasons including sharing my experience both with others in my situation as  caregiver, but also all those who are aware of, but have no direct experience with, the growing number of older people sliding into dementia.  From  more personal motivation, I need to be writing on something, and this serves that purpose.  And finally, as a writer, I always consider publication, and so this material might become a book down the road.

A less obvious consequence of my regular writing about our situation is that it forces me to think about it rather than just react to it.  I believe that is a valuable byproduct.  Care giving responsibilities can be exhausting.

But they can also become through repetition rather mindless.

And that is not a good thing.

Not for the recipient of the care, nor the provider of it.

On that reflective note, which had never occurred to me before it just popped into my head I will close this session with one last note.

As a writing instructor for many years, I always encouraged students to think of  writing as recursive.  Reading what one has just written often enough leads to another idea, one that would not have occurred to the writer had he or she not been writing.

It is good to understand that as a writer.

But also as a tool for the caregiver.

More than writing about our everyday activities, or even the problematical situations that arise and must be handled, when I sit down at my laptop I open a door into my mind, and perhaps most importantly, my feelings.  It makes me more self-reflective than I usually am.

And that, too, is a good thing.  That is what in hindsight I see is precisely what I was doing in the first section of this post, delving into how I felt, and feel, about taking time off from my caregiving responsibilities.

My wonderfully gifted wife placed a quote attributed to E.M. Forster beneath her email signature.  It is an apt closing quote: “How will I know what I think until I see what I say [write]?

Writing as an act of discovery, as a way to open the door to thoughts and feelings.


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Me and Me

Monday night after a pretty good day.  Carol laughed more than usual, sometimes at something she heard, sometimes at something humorous in her head.  Ryan joined us for a pizza supper, and he noticed the increase in her good humor.  And she ate three slices.

Got some positive responses to my second column for the Record Eagle, one in which within my 550 -600 word limit I attempted to deal with the mystery of the inaccessible thoughts that Carol clearly contemplates in silence, a kind of daydreaming although far more focused than that from the look on her face.

The responses to my column, and the fact I have undertaken the responsibility of a regular gig writing for the local newspaper leads me into what I have been thinking about which, for want of a better word, I will term the schizophrenia of my life now that Carol has seemingly settled into a stable period, and my caregiving routines are well established so that each day is pretty much laid out for me in terms of what I have to do and what space is available for things I might want to do.

Prominent in the latter category is my life as a writer.

I have always found time to write, no matter what else was going on in my life, what other responsibilities demanded my attention, or bright shiny object lured me away.   Maybe that is why I almost always write late at night when the house is quiet and all chores have been attended to, and distractions would have to be sought.

Or maybe it is just a matter of my natural biorhythm favoring that time frame right before sleep.  In any case,  from day to day I must be writing on something,

So that is the schizophrenia I am talking about.  Of course, I am using the term metaphorically to suggest that I am, in a certain sense, two people.

I am Carol’s caregiver having assumed those responsibilities thrust upon me by Carol’s disease, a burden I quite willingly have undertaken in spite of the demands, emotional and physical, that it places upon me.

And the other me insists on reasserting itself by retaining the interests and activities that have always been constants in my life.

Pausing now having set up this dichotomy to let these thoughts percolate for a while before attempting to flesh them out.

Tuesday night.  Sat on the edge of Carol’s bed holding her hands with my left hand while with my right I stroked the head of the dog who had come by for her share of my attention.  Now both are asleep.

That Currier and Ives domestic scene, husband, wife, dog at bedtime, of course, belies the complexity of our situation  But it is a moment of calm if not serenity, and a good way to end the day.

So I will leave it there for now.

Wednesday night after a Halloween day during which, predictably, no trick or treaters came to the door.  We are too far out of town and there are simply no kids around here, hardly anybody much under sixty.  Just in case, I had bought a bag of small Three Musketeers, which I have begun to share with Carol.

I’ve been exploring the idea of the two of me, the one who takes care of Carol, and also runs the household, something we used to share, and the other me with my carry over interests and aspirations.  Among the latter is my writing career, which I have been at for about half a century, and am not about to give it up now.

As for the first, as Carol’s caregiver, after two years I have become pretty well used to it, and for the most part it is now routine.  For her part, she seems to have settled into our routine as I have.  Most activities go smoothly.  She still, as she did earlier this evening, call my name, and I assured her, as I always do, that I was right there.  I continue not to know for a certainty whether she equates my physical presence with my name.

But my name, and associated memories are stored in her brain, and provides me some comfort, small as it is.

I suppose there is a next step when it might well become clear that I have in all ways left her memory and at best I will be no more than a figure like anybody else who attends to her needs.

I can’t say that I am prepared for the transition to that stage.

As for the carry over Steve, I still read books that interest me, having just finished a slow read of the new biography of Washington Roebling, the engineer who built the Brooklyn Bridge, and will perhaps tonight for a few minutes crack open the next book on my list, Elaine Pagels’ study of how Satan evolved from his brief and sometimes not terribly significant appearances in the Old Testament, primarily in the Job story, to his central role in Christianity, including becoming identified with the serpent in the Garden of Eden.

I continue to subscribe to my usual magazines, read the New York Times online, do my word puzzles, and follow my sports teams.

Most importantly, I continue to write and importantly keep my writer self visible. My new gig as a columnist for the local newspaper  gives me an opportunity for regular publication, which most, if not all, writers not only savor but need.  Without publication, most give up writing.  Others continue, driven perhaps by something like I sense is inside of me, persisting without an audience.    I can’t say what that something is, perhaps some ego in believing you have something to say, or maybe just the satisfaction of exercising your skill in your craft, as we all enjoy doing what we do well.  But whatever it is, publication feeds it.

I  think of poor Herman Melville, years after the publication of his Moby Dick marked the end of his viability as a published writer, still at his desk, pen in hand, filling the pages of the manuscript that became his wonderful novella Billy Budd  to be published posthumously thirty-three years later during what became a revival of interest in one of the greatest American fiction writer of his century.

I am not interested in such posthumous fame.  And I’ll certainly settle for considerably less fame.  A little recognition during while I am still breathing will do.

So I still market some of my finished work and I am rewarded every once in a while, as recently I was, with an acceptance, this time of a short story.  I have two excellent but as yet unpublished novels waiting for their turn in the  spotlight.

I do not think I will have the time or energy for new fiction, at least not in the foreseeable fiction, and that is too bad.

What is worse about all of this, is that I can no longer share any of it with Carol.

I have to accept that fact.  Our relationship wasn’t built on our mutual passion for writing.  Let’s just say it was  enhanced by it.

And the solitary version is not nearly as satisfying.

The two of me occupy somewhat uncomfortably the same time and space.  At some point one of those two identities will disappear leaving only its memory like tracks in a frozen path that suddenly stops.


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At The Movies

Carol is sleeping noisily , her mouth open.  The dog is asleep on the floor.  My energy is fading so I think I will join them in slumber after I lay out a thread to be continued.

At lunch some time ago, the conversation turned to movies recently watched.  I felt a little envious, and mentioned I hadn’t been to see a film since Carol’s illness became serious, now about two years ago.

“Why don’t you use one of your respite afternoons?” somebody suggested.

Why not indeed?

I go shopping on one respite afternoon, have lunch out on another, and the third is available for necessary appointments, but also for unplanned, or out of the ordinary events.

Such as going to a movie.

Which I would do alone.  And that gave me pause.

One of the things I look to do during my respite times is to interact with other people since my life is otherwise so confined to me, Carol,and the dog.

So I  have my weekly lunch with my guys, and occasionally when I have time after some other errand I will have a sandwich at the old general store where I can chat with Marci and provide an audience for Jim’s endless store of tales, many of them of the tall variety.

A solo movie trip would be different.   I am alone when I shop.  But that is a chore and involves movement and interaction.  It’s true that Carol and I always food shopped together, but I recall eons ago in my first marriage occasionally doing the weekly grocery shopping by myself because doing so happened to fit better into our working schedules.

So doing that now does not feel at all odd.

In a similar fashion, I usually went to my doctor appointments by myself as did Carol before she could no longer manage to do that.

But what I had not done as far back as I can remember is go to the movies alone.  We always went together.

That’s the point, of course, we did enjoyable things together.

After a lifetime lived one way, this new idea of attending a movie by myself is both exciting and off-putting.  I guess those competing feelings make a certain amount of sense.

Off-putting because I almost feel I am abandoning Carol to indulge myself in an experience she cannot share.  I realize by any rational standard that is a ridiculous thought.  It is, after all, my respite time.  I should be doing something I enjoy.  That is the point of respite time.  I do have these three time slots each week when I can leave the house and know Carol is being well attended.

Up until now, I have used these slots for purposes that felt necessary and/or right: shopping, lunch with friends, and occasionally work, as in a writing session in the library.

But never in these two years, have I done something for my amusement alone.  In fact, I cannot recall throughout my whole life ever going to any kind of amusement, be it a film, a concert, a sports event, alone.  I may have, but none come to mind.

That recognition explains why the thought of going to this movie by myself offers an element of excitement.  It will be something new.  There is the outside possibility that I might bump into somebody I know.   But more interesting is seeing the world, for a brief period, as an unattached free agent.

Of course, I know that at the deepest level, I dread that state.  But it will be interesting to experience it for  a couple of hours before sliding back into the now very familiar patterns of my caregiving responsibilities.

And so I will embark on this embarrassingly trivial adventure and see how it goes.

Thursday night, after midnight, jazz from KXKN in my ear buds.

This afternoon during my respite time I drove into town, parked my car in the public garage.  Walking from the parking garage to the theater did not seem right.  In downtown Traverse City on an avenue lined with restaurants and shops, almost everybody else was walking with someone.

Walking and talking.

The only solitary walkers, like myself, seemed to be moving faster as if they were late for an appointment.

Or like me, they had no one to share whatever it was they doing, whether shopping, or dining, or attending to some kind of business..

I found myself picking up my pace to match theirs, even though I was not at all late for the start of the film, which in any event would be preceded by ten or fifteen minutes of coming attractions.

That short walk thrust me into life without Carol.  A small part of me felt a little curiosity, a mix of apprehension but also a bit of excitement as though turning the page into a new chapter.

Having reached the State Theater, I bought one ticket for Redford in The Old Man and the Gun, walked directly in to the candy counter, which seemed a necessary first stop, bought a big bag of M&Ms, corrected the change the volunteer gave me, and then strolled through the doors into the cavernous seating area of this renovated building to a seat in the middle of an otherwise empty row, and settled down, feeling quite strange.

The sparse members of the audience, scattered at significant distances from each other intensified the strangeness.  Redford is an icon, the movie got pretty good reviews, and although this was a weekday afternoon showing, I had expected a larger crowd.  In a more usual movie viewing experience I would be aware, even without conversation, of those around me.  Watching a movie in a theater is essentially a communal affair.  That is part of the fun.

Watching the film, I was engrossed in it as I would have been had Carol been sitting by my side.  As I usually do, I followed the plot and tried to anticipate how it would end.  Would the screenwriters succeed in that difficult task of providing a satisfying conclusion, one that seemed both plausible and meaningful in terms created by the plot?  I imagine other writers of fiction who spend inordinate amounts of time constructing narratives that carry the reader to a good conclusion might also view film narratives this way.  I do pay attention, of course, to the visual elements of film and the acting.  But for me narrative construction is primary.

I was not entirely pleased with this film’s ending, but I conceded that given its plot centered on a career criminal’s life alternating between heists and imprisonments from which he would escape, spiced by a late life romance, it would be difficult to do much better.

Back onto the street, I hastened to the parking garage.  I had reason to hurry now because I was nearing the end of my respite time. I had told the aide I might run a little late, but I didn’t want to abuse the privilege.

In the car, almost without thinking I turned for a moment toward the seat where Carol would be sitting to ask her what she thought of the film.

We always shared out responses, not always agreeing, of course, but happy for the opportunity to bounce our reactions off each other.  Often a good conversation would fill up most of the time on the way home.

I turned on the radio and let music fill the vacuum.




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The Necessity of Routine

Late Sunday night, too late to start anything of substance, so I’ll just mention a couple of things, and then see what I can do tomorrow.

Thing one: a little while ago I held Carol’s hand as she fell asleep.  I have been doing that regularly, and perhaps will have more to say about it.

Thing two: I ordered Carol’s half wrap at lunch on Friday and served it to her that evening with our regular chicken soup plus sandwich dinner.  The sandwich used to be tuna fish.  She ate the wrap with enthusiasm.

Monday night after a pretty good day.  Cleaners came so house is in better shape, and Ryan joined us for a Chinese takeout dinner.  He’ll stop by tomorrow to give me a hand hauling up the heavy storm doors as it’s time to get serious about the oncoming winter.

The main plus today at the end of my long weekend is an opportunity for social interaction and conversation with both the cleaners, who have been coming here for years, and, of course, Ryan.  I need to find ways to combat isolation, so as to build on these people interactions, I am planning on using respite time later in the week to go to town to see a movie, probably the new Redford one.  Maybe even stumble into somebody I know.

Over the weekend Tracy called on Saturday and Danielle texted me on Sunday, and those contacts seem to be becoming regular occurrences.  That eases my mind about the long hiatus each weekend when nobody would know if I were alive or dead.  Not a morbid thought, just a practical one.

I read in today’s newspaper how a woman was stuck in her bathtub for five days because she couldn’t reach a grab bar.  She used warm water for heat, and drank cold water.  For five days until a mail carrier noticed her mail accumulating and  that discovery led to her being rescued from her predicament.

So not morbid, just practical.

That issue shelved for the while, it looks like our lives have settled in to a potentially long, stable period.  Carol’s cognitive issues, if anything, are a touch better, and her physical health remains good.  She is eating well.  Her nose still is stuffed as is mine, but she is not having much difficulty swallowing.

I am a creature of habit and function best within routine, and that is where I am now.  Our daily pattern does not vary much.  In the morning, I transfer Carol to her chair and into the kitchen for breakfast;  then we move back back into the living room where she dozes in her chair, and I do puzzles, or write or attend to correspondence on my laptop; lunch follows for both of us, Carol sometimes still in her chair, other times in bed while I generally eat mine in the kitchen; after lunch on non-respite relief days we follow the routine very much like the mornings with Carol back in her bed after a while in her chair while I again get on my laptop for work, socialization or amusement; for supper Carol is in her chair at the dining room table; after supper, she remains in her chair while I watch a little television  and after a couple of hours transfer Carol back to her bed;  later, usually about eleven, I get her ready for sleep, and once she is settled, I follow  my lifelong habit of writing in a silent house.  Then,  I read for a while lying on the couch where I sleep.  Some time ago, I bought a wrap around your neck reading device with two small bulbs that produce concentrated beams sufficient to illuminate the pages of a book.  Using it, I can read while the rest of the room remains dark.  Reading before I sleep is another old habit.

Thus the rhythm of our lives in a comfortable, repetitive pattern. I, of course, still often feel isolated, legitimately so, but the routine is a great help.

For both of us.

I believe Carol has responded well to the patterning of our lives.  I don’t know, absent any research, whether such patterning is thought to be  good thing for dementia patients, but my observation would suggest it is.

The one moment in this routine that is new and which I most deeply appreciate is my holding hands with Carol as she falls to sleep.  It is now a regular part of our routine.  I sit on the edge of her bed, and take her hand.  She returns the pressure, and usually places her other hand on top of mind,

I  treasure these moments as I sit next to her, feeling the pressure of her fingers around mine, and studying her face as her breathing becomes regular and she relaxes into sleep.  When I am sure she is fully asleep, I remove my hand from her grip as gently as possible, stand up and turn off the lamp  that is behind her bed.

It is a pale echo of how we used to sleep together, but it still provides a sense of physical intimacy that transient as it is, as much as a reminder of a lost past as it is, puts a gentle close to my caregiving responsibilities.

Then, since it is usually not yet midnight, and my bio rhythm perks up at that time, I write.

As I have always done.

This ordering of our lives, into which I mix the necessary chores of keeping food in the house, paying bills, attending to whatever problems the house, inside and out, decides to present,  schedule necessary doctor appointments for both of us, this structure enables me to maintain my equanimity in the face of this most difficult situation.

And it does one more thing, a most necessary thing: it provides regularly recurring time slots during which I can write, as well as to attend to the business end of writing.  I don’t have as much time, or energy for that matter, as perhaps I once did.  But what I have is enough for me to continue practicing what is so essential to my nature.

Were she able, I am sure Carol would agree as she was always so supportive of me in that regard.

Were I to stop, I believe I would be failing both of us.

Anyway, I don’t think I could if I wanted to.



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