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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No Surrender

After midnight Sunday night.  I have been busy the past few days working on my new writing opportunity as a columnist for the local newspaper.  It is important for me so to do to maintain the semblance of balance in my life.  The result, though, is I haven’t had as much time or energy for this project, and it is too late to do much tonight. 

I ‘ll  scratch out  a few words  in the hope I can pick up some momentum tomorrow.

As usual I watched PBS tonight, first Poldark and then a documentary on Itzhak Perlman  Nothing unusual in that fact.  What was different was that Carol, in her chair, was in the tv room with me.  Not in her bed.  Or drowsing in her chair in the living room.  But in her chair a few feet away from me, positioned in front of the recliner in which she would sit when we watched television together.

I did not come to the decision to wheel her into this room this evening lightly.  I don’t want to over analyze this, but it is worth a little exploration.   I was happy to have her in the room with me even though, for the most part, she was asleep.  I say for the most part because at least once she laughed at something humorous in the Perlman piece.  So maybe she was drifting in and out of sleep and processing, as she does, what she hears rather than what she sees. At any rate, I don’t now recall what she found funny, but I am sure that her laugh was in response to the audio from the show, and not from a voice in her head.

I guess having her in the room with me, in front of her own chair, can be seen as an effort on my part to hold onto a piece of our pre-disease lives.  I don’t see anything wrong with that when there really is no better alternative in our situation.  When, as I usually do, I watch television alone while she dozes in her chair in the living room until it is time to transfer to her bed, that separation is a concession to her disease that might ultimately prevail.

But not just yet.  Her presence in the tv room in front of her chair, occasionally responding to some bit of audio is a useful fiction that I intend to continue as a retention of the past because that past unexpectedly recurs from time to time.

Such as this morning when I was in the kitchen beginning to prepare breakfast when from her bed I heard her call, quite distinctly, my name.  I called “What?” to her.

I didn’t expect her to respond, and she didn’t.

But that brief interaction had the feel of our old time normalcy.

“I’m fixing breakfast,” I continued.

As I would have done in the past.  Perhaps she heard and processed what I said.  I can never be sure.  Often when I leave her for a little while such as to run down to the store or the post office, or even across the road to get the mail, I tell her what I am doing, ask if it is ok, and when I return I tease her by asking if she has missed me.

And fairly often she says yes.

So I continue to hold up my end of the conversational possibilities and am rewarded when she picks up her end.  It is well worth doing, not only for her occasional response but for my own head, a way to combat the strong sense that I am living alone.

Wednesday night.  A few snow showers mixed in with rain announce the approach of winter.  A little snow remained on the ground for some hours.  My snowblower is repaired and ready.  Am I?

At my weekly lunch last Thursday, on an impulse, perhaps suggested by Carol’s recent, robust appetite for lunch wherein she happily ate a grilled cheese sandwich, in addition to ordering my usual wrap, I requested a half wrap for Carol.  I always used to get two wraps for us when I was picking up lunch for us.  I did this so regularly that I just had to identify myself when I called and say I was coming by to pick up our usual sandwiches and they would be waiting for me.  As Carol’s disease progressed, a whole wrap began to be more than she wanted, and so I would get her a half.  But the ingredients for each remained the same, turkey in mine, ham in her, lettuce and tomato in both, mayo in mine, thousand island dressing in hers.

Then, even that seemed more than she wanted, and I stopped getting her one.

Until this past Thursday when I ordered one for her, asking Ardy, who runs the place, whether I was right in remembering that when Carol was still eating her wraps she had given up on black olives.

“Yes,” Ardy answered.  “That’s right.”

So I took her half  wrap home, and put it in the refrigerator for another time because the aide had already given Carol lunch.

I look for reasons to avoid cooking full meals seven days a week, so on Friday, reviving an old pattern, I heat up chicken noodle soup from a can, add toast for Carol and a PBJ sandwich for me.  I had intended this time to substitute the wrap for her toast but I forgot.

Until Saturday when I remembered the wrap in the refrigerator and offered it to Carol for lunch.

She devoured it with enthusiasm.

So our new/old normal for now and for as long as it lasts, will include a weekly half wrap for Carol.

It is a little thing, it seems, but a little thing of some importance.  In so many ways, large and small, our lives teeter between what was and what will be, and the best we can do is try to find stasis between those two conditions.  And in that stasis whatever presents itself as a continuation of the old into our new present is welcome whereas any adjustment that denies the possibility of what used to be continuing is most unwelcome.

Perhaps all of that sounds like too much weight to put on a half wrap containing ham, lettuce, tomato, thousand island dressing sans black olives.

But I don’t think so.

And I might even push a little further.  I used to add one of the wonderful, freshly backed cookies to go along with Carol’s wrap.  I still always get one with mine.

So, this next time, I’ll go for it, and get one for her.

This stubborn retention of bits of our past is an act of resistance to push back against the power of dementia to eradicate that past.

The alternative is surrender and I don’t see us doing that any time soon.

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What’s In A Name and A Squeeze of the Hand

Monday night.  Ryan came by for dinner and I retrieved a pizza from town.  Carol, as usual, enjoyed a couple of slices although I reminded her this pizza was not from our beloved Papa Nick back on Long Island.

This morning at breakfast, Carol stopped chewing the piece of toast I had just given her and said quite distinctly, “Steve.”

Nothing more.   Just my name.

I assured her that I was sitting right next to her as always.

She finished chewing.

What to make of this one word, said with so much emphasis.

First, she does not articulate words clearly very often.  When she does it is usually because she is upset about something when she might say “Stop” of just simply “No.”  Those words uttered clearly and with emphasis.  Occasionally, she forms other words, such as “yes” or more rarely a whole short sentence, such as “I like that,” although that last is quite infrequent.

She does talk a fair amount by which I mean she makes sounds in which it is difficult to find recognizable words.

I recognize that losing the power to articulate words is a predictable result of her disease.

None of which brings me any closer to dealing with what she said this morning other than it was an example of a clearly articulated word.

Which happens to be my name.

When I was sitting not two feet away from her.

But to what purpose?  And from what storehouse in her brain was it recovered?

I permit myself to let my spirits be raised by hearing my name coming out of her mouth.  But I also recognize that it is important not to put too much weight on the event.  Perhaps the word is no more than a shard of long term memory. Even so, why give it voice?  It was not said in a tone that revealed its intent.  I can’t say she was troubled and looking for help from that ancient source, the bit of her husband remaining in her brain.

In fact, when well she rarely if ever asked for my help in anything.  She was too damned independent and self-sufficient.  She was more likely to offer to help me.

Has that changed?

Does she now in the throes of her illness feel she needs help?  That possibility pulls at my heart as sometimes a certain expression on her face does as well when that expression seems to indicate if not fear then maybe confusion or sadness.  Or maybe frustration in the recognition of what she can no longer do, she who thought that through an exercise of her indomitable will she could do anything.  She did overcome her fear of public speaking so that in law school she could perform in moot court; she overcame her fear of flying by, well, just boarding the plane.

I know I am over analyzing this one word utterance of my name.

And I haven’t even addressed the perplexing question as to whether she associates that name with present tense me.  Of course, I’d like to think so, but I don’t want to be foolish about it.

And there is no certainty about any of this, just speculation.

Which I will be well-advised to understand is just that.

I don’t even know what certainty I would prefer because any conclusion that can be drawn would offer a mixture of pain and comfort.

Comfort in suggesting we are still in some fashion together, a pale echo of what once we were.

And pain in both the recognition of that paleness and the reminder of what has been lost if this crumb, this utterance, is all that is left.

Tuesday night after my usual shopping day.  Tired, but I want to capture what just occurred, which is a continuation of what I wrote last session.

Carol is now asleep.  I did a simple thing with her I had not done before.

I held her hand as she fell asleep.

I routinely hold her hand at various time during the day. I enjoy the physical contact, which approximates in a faint kind of way the intimacy we used to have, the comfort we enjoyed in each other’s physical closeness.

Typically, when I take Carol’s hand, she seems to squeeze mine.  Sometimes, perhaps, I have tightened my grip on her hand, but other times she acts first.  I do not know if this is a neurological response devoid of any conscious intention.  And her grip can be quite strong in such moments so that I need to exert a little effort to free my hand.

I’d like to think, however, that there is intention in that squeeze of the hand, that she wants to feel my flesh against her, that it provides her some comfort. At other times when I clasp her hand, she brings her other hand on top of mine.  Again, I cannot be sure of intention if any for often enough she holds her own hands together perhaps as a way of staying their wayward motion.

That perplexed and perplexing preface brings me to tonight.

After I had her settled in her bed, I took her hand.  As so many times before she closed her fingers around mine and then added her other hand.

I did not pull my hand away after a few moments as I ordinarily would.  Instead,  I studied her face, which seemed to relax.  Then her eyes closed.  Her breathing moved into its sleeping rhythm.

I waited a bit more.  Then very carefully, so as not to disturb her, I slipped my hand out of her grasp.

She did not waken.

As with her calling my name, I cannot with any certainty analyze this occurrence.

Whatever the actuality, I will assume some level of conscious intention, or if not intention awareness and contentment that I was there in physical contact with her..

Perhaps it is foolish to have such thoughts.

But if so, I don’t care.

Because whatever its source, with or without conscious intention or deliberate response, just like hearing my name in her voice, these seemingly insignificant instances are my reward, the sustenance that feeds my determination to stay the course.

If this is what my job is now, and my pay, so be it.

Note: Both halves of my two part heading to this post are literary allusions.  First Shakespeare, then Melville.

I couldn’t help myself

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Two Minus One Still Equals Two

Wednesday evening after a freakish weather day, more like mid-summer with a thunderstorm and winds, and  another storm brewing outside.  We had a good, quiet day  in spite of the weather, of which Carol seemed unaware.

On Saturday, when it was clear that whatever had caused Carol’s fever the day before was gone, I went downstairs to the furnace room to do my half hour on the treadmill.  Because I am not in great shape, although improving as a result of my new regimen, I strain a bit during the exercise.

On this occasion, when I was breathing a little harder, a morbid thought occurred to me.  What if I had a fatal heart attack?  That thought is not irrational.  I have two coronary stents, inserted some twenty years ago when even though I was asymptomatic a perfunctory stress test revealed blockages.  My genetics also are cause for concern: my two paternal uncles died from coronary disease in their early 70s.  I am now older than they were when they died.  My mother died from a heart attack before she reached 70.  True, my father lived until he was 86 and died more from despair at my sister’s unexpected death than anything else.

I usually don’t dwell on these factors.  When I do, I look to my father’s longevity more than the less sanguine example of my uncles and mother.

But on the treadmill that Saturday afternoon, the possibility of a heart attack presented itself in a particularly vivid way.  I imagined myself lying dead on the treadmill, the machine still  running, my body jammed against the machine’s stanchions.

For three days.

While upstairs in the living room Carol would be in her hospital bed unattended.

Because as I live now, from Friday afternoon when my relief aide leaves until Tuesday afternoon when next an aide arrives, I rarely have  interaction with anybody.  Except for telemarketers of one sort or another, the phone does not ring.  Nobody drops by.  Any contact I have during this period occurs because I initiated it.  I do go to the market every Sunday morning and at least one of the clerks there as well as the manager, is well aware of these habitual visits to pick up a muffin for Carol and the Times if it is available, but I doubt that familiarity would alarm either of them if I did not show up.

I shared this concern with my daughter Tracy.  She said she would make it her business to call every weekend to make sure I was still among the living.

I also talked about this concern with my lunch companions. Brad suggested a digital approach: scheduling an automatic email arriving in my inbox, to which I would respond.  Probably a better strategy than Tracy’s regular call.  She could set up the recurring email, and check her inbox for my response.

Enough morbidity for one night.

Carol breathing very heavily in her sleep. 

I enjoy the sound.

Late Sunday afternoon.  Sitting in the green room, which is our tv room, having just watched a football game.  Carol asleep in her bed in the living room, the radio still tuned to the classical music from Interlochen Public Radio.  In an hour or so, I’ll prepare supper.  Then, I’ll be back in this room for Sunday night television.

Tonight I’ll watch a new season of Poldark on Masterpiece Theater.  Like most of these productions it is high class soap made a bit more substantial by its historical setting. More relevant to me now and what I am about to explore is the recurrent sadness I still experience in watching these shows alone.  In fact, it is not unlikely that I continue to make sure I watch them as a way of preserving a piece of our shared life together, as we always, that is always, watched the PBS shows on Sunday night.

There are two green reclining chairs in this room.

I sit in the one closest to the window wall, the one on the left if I am facing the television.

Carol always sat in the chair on the right.

While watching the game I worked the Sunday crossword puzzle on my laptop during the frequent time outs and half time.  As I did, at a certain point, my laptop, which was running on battery, warned me that I needed to find another power source.

I retrieved its power cord from the living room and plugged it in to the outlet on the wall nearest Carol’s chair.  The cord was long enough for me to sit back down in my chair

Which I did.

I would not sit in Carol’s chair.  To do so would be unthinkable.

How so?

It would make sense not to stretch the power cord across the floor any farther than necessary.  But to sit in Carol’s chair would confirm the obvious fact that never again will she sit in it.  Of course, that is true.  I just don’t want to confirm it to myself.  It is one of many instances where I face the same situation, namely, how to deal with the lingering facts of how we shared space in this house.

In  the upstairs bathroom on the rack next to the tub shower Carol’s towel remains hanging in its accustomed place next to mine.  There is no point in leaving it there.

But I do.

Of course, there are features in the house that cannot easily be changed, such as the his and hers bookcases attached to the dining room wall.  Or her dresser across from mine in our bedroom.  Or her office down the hall from mine.

And so on.

In ways large and small, our living space announces that is serves two people.

To this point, I am content to leave it that way.

I’ve moved into the living room to sit in my usual chair.  Our sofa is in this room  but only one chair, Steve’s chair, which Carol ordered for me along with a reading lamp to stand beside it.  I don’t believe Carol ever sat in it.  Across from me now, though, is her new chair, the tilt wheelchair in which she spends a good chunk of her waking, and not so waking, hours during the day.  To my left is the hospital bed on which she is now rousing from her afternoon nap.

On my way into the living room I stopped in the kitchen to grab a handful of peanuts for a snack.  While in the kitchen locating the peanut jar in the cabinet over the stove,  I was reminded that the shelves in another section of this cabinet were filled with boxes of tea, all kinds of tea, mostly herbal, designed to be a natural cure for various conditions having to do with digestion, as Carol’s stomach was troublesome, and these teas, all of them, are hers.

Very occasionally I feel like having a cup of tea, perhaps as memory reminds me how my father, following his English heritage, drank tea with supper.  He, of course, would not abide tea bags.  His tea had to be brewed from tea leaves.  I’ll use teabags for mine, and among Carol’s medicinal teas is her Earl Gray’s.

Put simply.   I drink coffee, rarely tea.  Carol never drank coffee, which unsettled her stomach, and therefore drank tea.

Tea and coffee.

Carol and Steve.

Sharing space in this house.

Even now.

Although Carol is more like a living memory of herself.

Which I intend to hold onto.

Until perhaps all traces are gone.


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A Cold Winter Ahead

Thursday night. Classical music from WSHU in my ear buds.  Carol in bed, but not yet fully asleep. She breathes loudly through her mouth.  I imagine her nose is stuffed.  Nothing I can do about that.

And the sound reasserts her presence.

It’s been almost a week since last Friday when I came home to find Carol ill.  She has been better since then, but the incident has awakened concerns I have been keeping at bay but which now insist on being addressed.

There are two such, intimately related and one or the other will happen: either Carol will predecease me, or I her.  I’ve dealt with the second by setting up a trust, but not in the manner in which it might occur.  That is for another time, perhaps the next post.

The first, which I confront now, involves the prospect of my living alone into old age.

Some people experience a version of living alone as young adults moving out into their own apartment either when getting a full time job or even renting a place while in college as an alternative to dorm living.

I did neither.  I attended a college about a mile from my house and across the street from my high school to which I had walked rather than take the bus.   I spent my undergraduate years in my parents’ house, first walking and later occasionally driving my ’52 Packard to college.   In graduate school at the University of Connecticut, I lived in a private room in a dorm.  That was a small step toward living alone.  Then I married.

It was when that marriage ended that I fully set up housekeeping for myself, renting an apartment and furnishing it with second-hand pieces bought from a colleague who had gone through his own divorce and had the furniture in storage.  I still needed a bed so working in the theater shop at the college where I was working I built  platform variety of one with a bookcase for a headboard.

So, I was now living alone.  It did not seem difficult because in many ways my life went on in its usual fashion.  I went to my to my job as a professor and administrator.  Part of my old married life continued into my single condition as on alternate weekends I had my two daughters with me.

Of course, this was a difficult, stressful time because of the impending divorce, but I didn’t fret about my solitary status.  I was still relatively young.   My life lay ahead of me and I was going to reinvent myself in my relationship with Carol who soon became the center of all else that whirled around me.

And I was still rooted in New York among friends, colleagues, familiar geography and  close to my daughters as they grew up.

After a while, Carol and I lived together, then married after my divorce was finalized,  and my solo living ended.

Now, however, it is possible that I might find myself in my twilight years living alone in northern Michigan, a thousand miles from what I’ve left behind in New York: two daughters and grandchildren, as well as several very long-term friends.  It is also likely that my daughter with Carol, who is now living six hundred miles away in Minnesota, will wind up someplace other than here.  And although I have lived here for sixteen years, my roots in this foreign territory are still quite shallow, the friendships I have made not yet fully matured.  All in all a very different set of circumstances than I experienced long ago.

A chance encounter put this speculation into focus for me.

The other day I ran into a neighbor on the checkout line in the grocery in town.  My relationship with him falls somewhere between an acquaintance on the one hand and a friend on the other.  Like Carol his family has been on this peninsula for a very long time although more as hoteliers than farmers.

We chatted a little.  I asked him what his plans were for the winter, a pretty standard topic of conversation hereabout as our winters are long and difficult.  The local population divides into categories of those who head to warmer climes for the whole season, those who leave for a few weeks, and those who stay the whole time.  Carol and I fluctuated between the second and third categories, occasionally traveling to Florida for a break from the snow and cold.

He said he planned on going to Texas to visit a friend, and then to Oregon to spend time with his son.

Why this conversation was more than social chatter for me is that he is roughly in my age group, perhaps a little younger.   His background is, I believe, in psychology, perhaps as a counselor or therapist.  He is also an accomplished painter whose works hang in the gallery attached to the Tavern up the road from here.  He’s a good enough handyman to maintain his family’s rental cottages, he is something of a sailor, and also has a second place in town.

None of which is why I am talking about him.

Rather, I see in him what I might become down the road, living here as a single older man.

In that respect his travel plans for the upcoming winter indicate the freedom of movement such a person enjoys as opposed to the limits on my movements imposed upon me by my care giving responsibilities.  The question in my mind is whether enjoys is an accurate word to attach to my expectation that I, too, might be as free as he appears to be to deal with the winter as he likes, and more generally, to do what he wants to do when he wants to do it.

Having now years of experience in northern Michigan, I imagine living a solitary existence on this snowbound peninsula with the winds howling in off the waters of the bay and through the less than perfect seals of this old farmhouse would be challenging if not depressing.  So, perhaps should I find myself in that circumstance  I would also travel to visit children and grandchildren or a very good friend at whose wedding I was his best man, a friend who happens to live in snow free Florida.   In warmer weather, I could visit another good friend now in Syracuse, or ones back on Long Island, or even an older friend who lived across the street from me in Brooklyn and is also in upstate New York in Utica.

At this point, however, hearing Carol’s heavy sleep breathing not ten feet away, I cannot even begin to tolerate that thought.

I do not know my neighbor’s story, how he came to be an older single man.  He does not appear to be at all unhappy with his life.  Perhaps he is in a relationship, but I don’t know enough about him to begin to guess about that.

It might be worth talking to him at some point.

But not now.  It is too damned distressing.

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A Scare

Monday night after dinner.  Carol still in her chair after eating at the dining room table.  Soon I will want to move her into her bed for the night, so I am stealing a few minutes of writing time now.  A little later I will be watching the late Dodgers game from the coast.

This morning as we were both rousing, Carol clearly called out “Steve.”

I answered, “I am right here on the couch.”

She replied, “I know.”

What exactly did she know?  That I was where I said I was.  That is the minimum, I suppose, acknowledging that my male voice came from close by.  That I was the one always nearby.  To be sure.

But what about the next step, and the one after it.  First that I was Steve, and, here’s the important part, the Steve who is her husband, is now her husband and not was her husband as a shard of memory.

Of course, even the minimum answer is a positive, showing her connection to the here and now as she woke up.  The moving up the scale toward her acknowledging me as her present mate is maddening.

Maddening because it makes the present unclear and the future uncertain.  I do not think that the downward course of this disease can be changed.  Perhaps stabilized for a while.  But for how long?

I am so used to thinking in known time intervals, so many days before the third Wednesday when my Social Security check is deposited, or years ago, charting when I would retire, the timing of life’s moments big and small, has always been clear to me.

But not now.

I don’t know if I would be happier with a timetable telling me how this disease is going to work itself out.

Sort of like the cliched question asking what would you do if you had 24 hours to live as a matter of certainty.

A timetable would provide the kind of certainty I am used to dealing with.

But the point is, I don’t want this damned disease to complete its job.

Thursday night.  No music on.  Trying to squeeze out some words.  There are times,  fortunately for me not very often, when I have to push hard to get started, when the blank screen and the beckoning keys do not perform their usual magic of opening up that part of my brain from which language, almost unbidden, usually flows.

So, we’ll start and see what happens.

Today, Clare, the nurse practitioner, gave Carol a good report on her physical condition.  Beyond that she shared what has now been a repeated observation that Carol seems more aware, more responsive, and less resistant, all good signs.  Clare asked if Carol ever smiled.

“Yes,” I said, “on occasion.”

“Are you familiar with FAST? Clare asked.


She tapped the keys on her notebook and brought up a screen with that acronym as its heading.  Below the heading was a list of the seven stages of dementia. Next to number seven was the notation of losing the ability to smile.  Apparently, FAST is a dementia scale, a tool that indicates the degree the disease has reached.

Clearly, I was not happy that Clare’s question about smiling appears on the end of the scale.

“Does that make you uncomfortable?” she asked.

“Yes,” I replied.  “But with or without it, I know what I am dealing with.”

We turned in a more positive direction.

“We can increase the dosage of Galantamine,” she said, “assuming it is responsible for the improvements in Carol’s condition.”

And so we agreed to up the dose from sixteen mg a day to twenty-four, the maximum allowable.  Perhaps the increased dosage of this medicine, which Carol has only been on for a few months, will continue the improvement.

I am doubtful.

Well, some words came, and now it is time for sleep.  Tomorrow I intend to go to the main library in town for another writing session.

Saturday afternoon.  I did in fact go to the library but spent writing time revising my upcoming blog post, so didn’t add new material.

When I arrived home from the library in town yesterday, Tonda, the aide, was apologetic.  “I could not get her to eat lunch,” she said.  “I tried, but she just went back to sleep and has been sleeping all afternoon.”

I assured Tonda that this was not that unusual.  Carol often slept a lot in the afternoon, and was not always interested in lunch.


But I was mistaken.

After Tonda left, I could not rouse Carol for more than a few seconds.  She felt a little warm to me.  But Tonda had said that Carol had complained about being chilled and so she had bundled her under two blankets.  I removed one.  After a while, she remained warm to my touch.  I was able to rouse her a little bit, long enough for her to sip some water, and take one apathetic bite of a protein bar.

And then back to sleep.

Suppertime was approaching.  Carol seemed to be drooling a little bit.  I wasn’t sure her eyes were focusing properly.

Was she having, or had she had, a seizure?

I tried talking to her, but she did not respond.

I was getting seriously worried.

What to do?

It was late afternoon, after five, but I called Chronic Care anyway.   Predictably I got a message that the office was closed.

But at the end of the message, there were instructions for help with a medical condition that could not wait.  Call Munson Hospital and ask for the Chronic Care provider on call to be paged.

I did.

Within a few minutes, the phone rang.  My caller ID indicated “Private Caller.”

Just what I need, I thought.  A junk call.  I don’t always let the answering machine take those calls because the caller often leaves thirty or so seconds of static. I pick up the phone as though answering it and then hang it up.

But this time before I could get to the phone the answering machine had been activated and I heard a voice identifying herself as the on duty Chronic Care provider.

Much relieved, I  spoke with Angela.  I described what I had been dealing with, speculated that maybe Carol had come down with something that produced a fever, didn’t think, as I was giving voice to thoughts running through my head, that she had had a stroke because she had been able to squeeze my hand.  Yes, Angela replied, that sounds right.  A seizure?  Possibly, if she had already had one it would be hard to tell.  I would like to check her temperature, I said, but I won’t be able to get her to hold the thermometer in her mouth.

“Hold it under her armpit,” Angela replied.


“Yes.  It’ll take a little longer to get a reading, and it’ll be about a degree lower.”

I looked over at Carol at the short sleeved nightshirt she was wearing, contemplating having to remove that.

“That’ll be a bit of a process,” I said.

“Well, keep an eye on her.  What  time do you usually have supper?”

“About seven, seven-thirty.”

“See if you can rouse her to eat something,” she said.

But as that time approached, and she still felt warm, and unresponsive, I called again.

“I’m going to try to take her temperature,” I told Angela.

I did not try to remove the nightshirt.  Instead, I rolled up the short sleeve far enough for me to get the bulb of the thermometer nestled in her armpit and held it there.  When I thought I had held it there long enough, I took it out.

It read 100.

Add 1.  101.

I wanted to be sure it had been under her arm long enough, so I put it back for another minute, removed it read it.

Still 100.

I reported the result to Angela.

“Shall I give her aspirin?” I asked.

“Tylenol would be better, “she replied.

In the downstairs bathroom there was Motrin but no Tylenol.  I still had the phone in my hand, and told Angela I was going to look in the upstairs bathroom.

I did and found Tylenol.

“How much?” I asked.

“Is it tablets or capsules?

“One and a half.  Can you cut one?”

“I have a pill splitter,” I replied.

I administered that dosage in applesauce, as I give Carol all her meds.

In about an hour, the phone rang.  It was Angela.

“I’m about to check her temperature, “I said.

“I’ll wait on the line,” she said.

This time the thermometer read 97.  Add 1.  98.

“Good,” Angela said.  “Try to give her some supper.  Call me if you need to.  I’m on all night.”

Carol roused, and ate some yogurt, drank some water.

Went back to sleep.

I fixed myself a frozen dinner.

This morning, the phone rang again.  I don’t recall what the caller ID said. I answered it.  It was another nurse from Munson.  I told her Carol now seemed OK.

And she was.

She had a full breakfast, and a good lunch.  No sign of fever.  I expect she will eat her supper in a while.

That’s what happened.  I still need to digest and then write about it.

Perhaps tomorrow.


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Sunday night, WSHU in my ear plugs after watching The Miniaturist on Masterpiece.  Apparently it is a repeat, but was unaware of it.  Set in 17th century Amsterdam, which attracts my interest in most things historical. Plot premise of some mysterious connection between a model house and the actual house is a stretch, but will see if it can be made to work.

The weekend was less isolating than usual, in part because of what I did yesterday, and in part because of what my daughter Tracy did today. Yesterday, I wanted to post something on Instagram for no particular reason other than I now have an account.  I noticed that some writers post images of their book covers, so I thought I’d do that.   However, I wasn’t satisfied with the shots I took because I couldn’t get them sized right.  So instead, I posted an image of the spines of my eight novels on my bookshelf, and shared it with Facebook.  That drew some attention and comment.

Today is the first full day of Rosh Hashannah (Jewish holidays start at sundown the day before.) Carol and I used to invite four good friends and together we would prepare the meal: I would cook the brisket, and Carol would prepare apples and carrots.  Our guests would bring something sweet for the new year.

But that was then and this is now.  I am low-keyed about holidays generally, and in spite of those happy memories of sharing the occasion with friends, I was still comfortable letting the Jewish New Year slide by without my notice.

But when I checked my messages this morning I discovered  that I was part of a group message Tracy started through which family members could exchange greetings.  I enjoyed participating in the group, which connected me, albeit digitally, to family members in New York, Florida, Manchester, England, California, and even Australia where my first cousin Ben is a rabbi.

I’d be dishonest or at least incomplete if I did not mention that today was also a big sports viewing day for me–baseball and football.  Won the former, lost the latter.

When I came home Friday, Tonda, the aide, told me that Carol had been very verbal expressing her displeasure as a trainee aide was attempting to give her a bed bath.  The immediate point was that this aide, who otherwise did a good job, might not work out if a bed bath was going to be expected of her were she to be assigned at some point to work here.

More important, however, and Tonda was aware of this, was Carol’s being verbal.  I have noted that Carol is talking more.  She continues, of course, to have articulation problem, but she simply is attempting to speak, or perhaps in her mind she is, in fact, speaking.

In is doing this in two ways.

She is giving voice to people she is thinking about.

And she is responding more often and clearly to conversational bits that attract her attention.

I have mentioned an example of the first, when without any obvious external stimulation she said “Mom.”  When I asked if she were thinking of her mother, she nodded.  I responded that she was being taken care of in Orchard Creek, and Carol replied, quite clearly, “That is good.”

Then, a day or two ago, while she was sitting in her chair across from where I was in mine working on my laptop, she looked up as if she had remembered something, or a thought had occurred to her, and said “Danielle,” our daughter’s name.  I cannot remember the last time she said that name.  I, of course, talk to her about Danielle, usually without much response.

“She is living in Minnesota,” I said, “like you did years ago.”

She nodded.

On another occasion, in a similar matter, she said “Ward,” her younger brother’ name.

And this morning while still in bed, she again appeared to be reacting to a thought, and said “Dad.”

Finally, in a similar but somewhat different way, recently several times she has addressed me by name, again something she has not done in a while.

I don’t know quite what to make of these one word utterances, other than to say they are new, and they indicate the emergence of some kind of stored memories.

Got this started.  Perhaps a good time to let it percolate.

Tuesday night after a long and tiring day including my weekly shopping and a wasted visit to my dermatologist whose office managed to lose my appointment, which I had to reschedule for a couple of weeks down the road.

But the day also offered a couple of bright spots.  The first was an email from the editor of Rosebud, which published one of my stories last winter and to which I sent three more a few day ago.  The editor responded to one story in particular commenting on the very last line as not wrapping the story up.  I reread the story and concluded he was probably right.  I rewrote the ending and sent it off to him.  That he took the time to be that specific suggest he might well take the story.

The second bright spot was a totally unexpected call from Toyota’s executive offices to which I had sent an old-fashioned paper letter complaining about my continuing problem with the Pandora app on my Camry’s Entune system.  I suggested in that letter that my lease fee be reduced by ten dollars a month until Toyota fixed the problem.  To my utter surprise someone actually read the letter,  took the time to research my previous contacts on the issue, and promised to get back to me by Thursdsay.

We’ll see if this actually goes somewhere.

I’ve been writing about the apparent improvement in Carol’s ability to pull out shards of long term memory, such as giving voice to family members, such as her mother, father, and brother, as well as our daughter Danielle, and occasionally calling me by name.

I do not know what, if anything, to make of these brief outpourings.

But I do realize that trying to deal with them, besides guessing at their significance, also puts me in mind of one of the most difficult underlying problems of our situation.

That is how to deal with the persistent push and pull of time, the before of her disease, the now of her condition, and the movement, however haltingly, toward the future.

Simply, I have always had an exaggerated sense of time, even an intense relationship.  I hate being late.  For anything.  In fact, one of the very few sources of disagreement between us was Carol’s opposite attitude toward time, in general, and timeliness, in particular. To say we were wired differently is true, but recognizing that did not remove my irritation when we would be threatened with arriving someplace late, such as a doctor’s appointment, even as I surely recognized, once in the doctor’s office we would no doubt have to wait to be seen.  That didn’t matter to me.  I just wanted to hold up my end of the arrangement by arriving on time.

In a similar way, I always know what day it is.  I know when to expect money to arrive, or when an obligation must be paid, and keep those two in balance with each other.  True, I now use the calendar on my phone to check my memory, but most of the time that is unnecessary

But now, that clarity, that orderliness is undercut by the uncertainty of our situation.  On my desk in my office is that ancient manually controlled perpetual calendar I’ve described before.  Its display of day and date has to be changed by hand each day.  For years, for as long as I have owned that little device, and we’re talking about something I have had for close to half a century, long before digital calendars, I scrupulously changed the day and date on it.

However, a year ago in August I let it stay on the twelfth of that month, marking the day without conscious intent when we stopped going upstairs to our bedroom. Tracy reminded me, when I mentioned this date, that it is grandson Evan’s birthday.  With all due respect to Evan, the more immediate significance of that date to this context is the day when we abandoned the effort to have Carol mount the stairs to our bedroom.

That moment is now captured on that device.

Yet, on my office wall, and the kitchen wall are two 2018 calendars, each kept correctly on the right month.  And my new watch correctly shows the date every day.

Thus the contradiction.

Emblematic in some way of my unsettled mind, my present ambivalence to time, that erstwhile rock solid constant in my relationship to the world.

Tracy’s message group drew me in, with some force, to the present.

Yet that present still seems to me to be somehow unreal as I try without much success to wrap my mind around where we now are.

Note 1: After some back and forth regarding its last line, my story “Like Water Over Stones” was accepted by Rosebud.

Note 2: The Toyota representative did call to tell me that the Pandora problem was going to be fixed in November by removing that app from the Entune Suite.


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Of Memory, Hers and Mine

Tuesday night, late.  Not much energy.  Violent thunderstorms the past couple of days.  One last night knocked our power out not long after I went to sleep at about twelve thirty.  I had put the ceiling fan on because the air was so humid.  I roused when somehow I realized the fan was not turning.  My night’s sleep was interrupted for several hours while I retrieved lanterns and a flashlight and tried contacting the power company to tell it that the call I received indicating power was back on did not apply to our house.  Tuesday is my shopping day, so I dragged myself into town and bought groceries.   Carol had a bed bath today as she does now every Tuesday and Friday, leaving her tired so I took the opportunity to rest.

More storms are predicted.  I have one of the lanterns on the table next to the couch where I can reach it.

Carol’s condition seems stable, and in some ways almost a little better.  For the most part she eats fairly well, and does not resist the necessary handling of her body.  She seems to have, as I have observed before, developed new memory capability, in having learned the steps involved in the transfer process, sometimes even anticipating the one when I encourage her to stand up and she begins to rise up off the seat of the wheelchair.

Not always.  But often enough to suggest the idea has found a resting place in her brain that can be reached.

She does have occasional difficulty swallowing.  But that does not appear to be a neuromuscular issue caused by her disease.  Rather, as confirmed by a speech therapist whom I asked to check her out, the difficulty is caused by mucous collecting in Carol’s throat because she does not, cannot, blow her nose.  I have this issue as well, perhaps because of allergens in this old farmhouse.  I blow my nose throughout the day, and still occasionally a bit of food gets caught in my throat.

Musenex has helped relieve her problem.

The well is dry.  Will let it fill again and resume, perhaps tomorrow.

Friday afternoon in the community library having popped into town for a follow-up blood test ordered by my doctor.  Frankly, I don’t recall which of my numbers had shown a slight rise leading to the retest.

Lot of traffic in town, likely because this is the beginning of the last big weekend of the summer leading to Labor Day on Monday.

As I turned onto the road to the library I passed a fine looking horse in the pasture to my left.  The image reminded me how Carol would stuff a couple of apples in her pocket when we walked a dirt road along a different pasture where there were usually several horses grazing.  She would stand by the fence with an apple in her hand and one or the other of the horses would notice and trot up to take it.  Her farm girl roots were very deep.

The memory of those walks stabs.  I’d like to curse it.  But if such memories disappear, then what is left?

I left off last time saying that Musenex has helped relieve the food trap issue for Carol. It has, but not completely.  It would have been foolish to think any such problem can be fully eliminated.

On a more positive note, yesterday there was another instance when Carol’s mind seemed to have held on to the present moment.

We were finishing breakfast, when she kind of started, as sometimes she does when her brain appears to be refocusing, coming back from wherever her imagination had been taking her.

“Mom,” she said, quite distinctly.  I was unsure whether she was calling for her mother, as perhaps she had done when she was a child.  Her tone did not suggest that.

“Are you thinking of your mother?” I asked.

She nodded.

“She’s in Orchard Creek, being taken care of,” I said, offering a factually correct response.

“That is good,” she said.

She did not seem puzzled by the specificity of the response.  Did she remember the facility at Orchard Creek where once when she was still able to travel we had visited her mother?


Or maybe she was only indicating she was glad that her mother was being taken care of.

But even that involves her remembering that her mother, indeed, requires care, and can no longer be expected to provide it for her or anybody else.

When I get home, I will mention that at the post office I met an old friend, more hers than mine.  I will be curious to see how she responds to his name.

Respite time about over.

She did not respond to her old friend’s name, even with a little prodding.

Monday night, late at the end of the three-day Labor Day Weekend during which motorcycles roared up and down Center Road throughout the daylight hours.  Maybe there was a biker convention in town.  I am sure these vehicles could be made to run more quietly.  But the noise is part of the point, isn’t it?  I recall an incident from years ago when we were living in Centereach on Long Island, N.Y. in a house that backed on to the power company’s easement, an area of sand lanes between scrubby vegetation.  Those sand lanes attracted dirt bikers.  One day, the noise from those was particularly irritating, and so as one approached, I walked out of our back yard onto the easement and stopped the approaching bike, on which sat a boy of about ten or twelve.  “Your bike makes a hell of a lot of noise,” I said to him.  His expression, which had been apprehensive as he was confronted by an adult male, broke into a broad smile.  “Yeah,” he replied.  I let him think that we were bonding over our mutual appreciation for making a lot of noise.

Carol does not seem to be bothered by the noise even though I am becoming convinced that she is dealing with the world primarily through sound.  It is clear to me that she listens intently to the music I have playing, but also the occasional spoken words from the hourly news updates or other commentary.  In that regard, I do not believe she retains much information.  But if I tell her about something I think she might react to, she sometimes does as when I told her Aretha Franklin, whom we had seen at Interlochen, had died.  The fact of Aretha’s death registered and produced a facial expression of regret, but the concert we attended did not seem to provoke a memory.

This afternoon, Tracy, back from a trip to Colorado called.  Carol was sleeping, and the music was still playing, so I moved into the green room to talk to my daughter.  During the conversation, I heard loud sounds coming from Carol.  I couldn’t tell if they were cries or laughs.  Carrying the phone, I went back into the living room to her bed, and heard again what now was clearly boisterous laughter.  Tracy heard it as well.

“What’s so funny?” I asked  Carol.  “Did you tell yourself a joke?”

“Yes,” she said.

A little later, while I was back in the green room, I heard that laugh again.  As did Tracy.

“I’d love to know what that’s about,” Tracy said.

“So would I,” I replied.

And I certainly would.

In fact, although I may be mistaken, I believe Carol has been somewhat more verbal lately, more likely to respond with words, or the occasional sentence.

A pleasant note, to close this writing session.

Wednesday night late.  A productive day insofar as I attended to some writing business.  I sent off Carol’s stories to a university press editor who asked to see the whole MS.  Turns out she had some preliminary conversation with Carol about the story collection some years ago.  And as long as I was in that frame of mind, I sent out two of my stories that still need to find a home.

Then a good supper with Ryan, good because I always enjoy his company, and good because Carol ate well as she had done throughout the day.

Kyle called this afternoon at the suggestion of Clare, the nurse practitioner, who no doubt informed him of Carol’s progress in responding to the transfer process by starting to stand.  He agreed that this was remarkable and said he would get back to us when he figured out when he could again work with Carol.

I don’t know what Kyle might be able to accomplish, but the fact that he thinks it worth pursuing is encouraging.

At dinner with Ryan, Carol again participated in our conversation, laughing at something humorous, and verbally expressing her enjoyment of the Chinese takeout.  In this regard, and in a continuation of the seeming improvement in her cognition, she has lately used my name again, which she had not done for some time.  It is still not absolutely clear that she associates my name with the physical me, but I am beginning to suspect, perhaps willfully, that she does, at least some of the time.

The past couple of days I have tuned in to the hearings on the Supreme Court nominee.  As I sat there, the thought struck me with considerable force that these hearings are something Carol would have loved to watch, combining her law background with her political views.

I suppose these moments when I am reminded of our past time together will continue t0 pop into my mind, unbidden, and I can choose to welcome them or not.

I hope I have the strength to accept them as a way of being thankful for what we were able to share for so long, to hold onto and cherish those memories and refuse to yield to self-pity at what has been lost.

That is a hard lesson to teach myself.

But I try.

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Sunshine and Clouds

Monday evening after supper.  Carol sleeping in her chair and I will shortly move her into her bed.  Just want to get started because I’ve not been able to find time and ambition over the weekend.

About a week or so ago, when Ryan had joined us for dinner and was still here as I was transferring Carol from the wheelchair to her bed, he witnessed something startling.

I was talking Carol through the steps of the transfer process as I always do.  When I reached the part where I say that with my help she will stand up and dance over to the bed,  at that point as I started to put my arms around her, but before I began an upward motion, on her own she lifted herself up off the seat of the chair.

And began, albeit unsteadily and uncertainly, to stand.

Let’s be clear.  Without a doubt she would not have stood all the way up without my usual help.

But she had remembered the routine.  She had responded to the verbal prompt.

The next morning, the nurse practitioner was here and witnessed the same thing.  She was shocked.

In a good way.

And so, I ask myself has Carol created a new memory?

If so, how significant is that?

OK.  Got it started.

Tuesday night.  Just glanced through a document from my elder attorney which detailed the loose ends that have to be tied up for the trust to be prepared for all contingencies.  I confess my earlier interest in the legalism of this business has evaporated and I did not focus as well as I should have.  I understand that guarding against unfortunate contingencies is necessary even if my eyes start to glaze as I read about them

Continuing my exploration of the possibility that Carol has formed a new memory.

Perhaps that is not accurate.  I could see what I can find out on this subject by doing the appropriate neurological research.

But I won’t.

In the first place, although I know well enough how to do research, I never enjoyed doing it all that much.

Second, I anticipate that the research would not yield a clear consensus since so much about this disease is not yet understood.

So, I prefer to observe and think about what I see.

What is clear is that in starting to stand during our transfer process Carol is responding to a verbal prompt.  If I don’t say anything, nothing happens.

I have not tried that verbal prompt in other situations.  I don’t want to muddy those waters.  I believe that if there is a new memory, it has a fragile hold in Carol’s brain.  After those first few successful responses, on other occasions she needed more encouragement from me to begin to stand.

Another complication has also to be factored in.  I sense a war going on in Carol’s head between her primal fear of falling that still causes her to push back instead of forward and up, and her occasional executive function overcoming that fear.  This conflict is most obvious at the beginning of the transfer process when either from the chair or the bed, I move her into a sitting position as a prelude to getting her on her feet.  Sometimes this step goes smoothly, but other times she pushes back hard.  If I resist that backward movement for a little while and verbally coax her into relaxing, she generally does. Once relaxed, I am guessing that her executive function has asserted itself.

If not that, I don’t know what.

The larger point, however, the bigger question, is whether or not her brain even so compromised by this disease has any recuperative possibilities.

Does she, in fact, as I asked at the beginning, retain the ability to make new memories?

Maybe a new memory is not right.

Perhaps her brain is somehow recapturing old information still stored there.

In either case, though, she is doing something she had not been doing for a long time.  That in itself is remarkable.

And cause for a little good feeling.  I am not foolish enough to expect much more, certainly not any additional improvement.

And as always with this disease, even good news such as this is also a stark reminder of how far down this road, from which there is no real turning back, we have traveled.

In the community library Thursday afternoon.  Unusually active, as librarian seems to be introducing a woman and her children to the layout of books on the shelves.  Perhaps the family has recently enrolled the kids into the charter school, opening in a couple of weeks, that is replacing the public school in this building.

Pure speculation on my part.  But I am a fiction writer, an observer of people, and I do this kind of thinking automatically.  And if I choose to write a story about this family, my speculation can be the basis, the skeleton I will have to clothe and provide inner lives to.

I have completed setting up my trust although certain chores remain to finish its implementation, such as designating additional beneficiaries for an insurance policy that lists only me now, and for our joint checking account as well.  The trustees will need access to these accounts.

I will take a deep breath before proceeding with those chores.

All of this business turns my mind inevitably toward my own end of life.  When my father died some twenty-five or so years ago, I became the last survivor of my nuclear family.  An image occurred to me at about that time.  I am riding up an escalator with nobody in front of me.  I suppose in my imaginings this was my family’s private escalator, and ahead of me, having already reached the top and then disappeared ,were my mother, sister, and father.

In that order.

They rode up and then they were gone.

For some reason, I do not look back to see who might be coming up behind me.  Perhaps I am being self-absorbed.

Or don’t want to say good-bye.

But for better or worse, my focus is straight ahead toward that top over which at some point I will go.

And then disappear.

Enough of that kind of dark thoughts this sunny afternoon as my respite period nears its end.

As I start to pack up my laptop, a young boy, one of those who had been introduced to the library, sits down at an adjoining table and looks disapprovingly in my direction, perhaps unhappy with the noise of my opening the case into which I will put my laptop.  He has a pile of books on his table.  For a few moments, standing in front of him is an older woman, who probably is not related, but just another patron.  Still, observing these old and young users of this library provides a kind of antidote to gloomy speculations.

Saturday night.  Not really going to start a writing session.  Just want to record one incident that fits my exploration of the workings or non-workings of Carol’s brain.  So here it is.

This afternoon in keeping with my recent commitment to exercise on the treadmill three days a week, one of which would be Saturday, I changed from my sandals into my walking shoes.  Carol was in her bed.  I leaned over her to tell her that I was going downstairs to the treadmill.

Then I said, “Now, you just stay here.”  I often say that as a kind of way to thumb our noses at the nasty fates that have made that statement ridiculous.  This time I added, “And don’t party like you usually do when I’m gone.”

Her face opened into a wide smile.

And she laughed.

Not a big belly laugh, but a very discernible laugh.

She was with me in that moment, completely, and as fully as she used to be.

I don’t know if I had a lilt to my step, but my upcoming exercise surely seemed less a chore, if not quite a celebration.

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Of Then and Now

Monday night.  Carol dozing in her chair after supper. Before long, I will transfer her into her bed for the night.  Time enough to start a writing session and see where it might lead.

I’ve said more than once that weekends, actually the period from Friday afternoon when the week’s last relief aide leaves until Tuesday afternoon when the first aide of the week arrives, that four day stretch is difficult for me, although I doubt Carol is aware.  Ryan’s Monday night visits for dinner shortened that stretch but he is working six full days in the restaurant during this summer season and comes to mow the lawn and perhaps join us for a meal when he can find the time, usually later in the week.

These last four days have been different.  Tomorrow is an election day for primaries for state and local positions, and the phone has not stopped ringing with political robo calls. One such, which my caller ID told me was from Hamatrak, Michigan, by itself caused the phone to ring four times.  I did not total the number of such calls but I am confident that twenty for today alone would be a conservative number.

The calls started slowly on Friday and crescendoed about two hours ago.  Not the kind of human interaction I would prefer.

Late Saturday afternoon.  Carol and dog sleeping.  Just finished the Times crossword puzzle.

Through open, screened front door comes the constant sound of traffic going up and down Center Road.  Most of the vehicles are clearly those of tourists heading back and forth visiting the lighthouse and Hessler Log Cabin in the park at the north end of the Peninsula. They are driving fast along this state road that passes by our house.  In the spring, they move more slowly because they are looking for cherry blossoms; in the fall, they also travel at a leisurely pace checking out the colors of the turning leaves.  Only in the winter is this road quiet.

Yesterday was our anniversary.  It came and went like all other days.  Not surprising.  Carol and I used to celebrate by going out to eat, usually at an upscale restaurant.  We didn’t swap presents, nor did we encourage our daughter to congratulate us, which, is, when I think about it, a kind of silly idea anyway.  Why would she be congratulating us?  For conceiving her?

Maybe I’m being too literal, so I’ll leave that point alone.

Because Carol has lost weight, she no longer wears the diamond ring I bought for her years after we married when finances permitted.  One day I found it on the couch cushion where she was then sleeping.  I figured out a way to have it properly sized by using one of those ties that can be adjusted to a certain circumference.  I wrapped one around her ring finger until it fit securely as I would want the ring to do.  I thought I would take it and the ring into a jeweler and have the ring downsized.

I gave up on that idea after a while, and just put the ring in a safe place.  Seeing her finger sans the ring bothered me, but not for long.

I did tell Carol that it was our anniversary.  I do not know if she processed that fact.  I could not see any obvious reaction.

Some motorcycles just roared by to provide a different external audio.  If I were to keep track of the traffic, I would guess this would be one of the busiest days of the year.  There is barely an interval of quiet.  I need to draw on my ancient city mind set to block it out.

I have been thinking of writing again about what seems to be the central fact of my life now.  The thought was prompted, as it usually would be, by the appearance of something,  an object, innocent by itself, but emblematic to me.

In this case, the thing appeared when on my way into town I glanced in my rear view mirror and saw hanging from the mirror in the car behind me the kind of handicap placard we used to display, and which I still have in the brown paper bag into which I loaded stuff from the lease car I turned in last December.

There was no point in installing the placard in the new car so it remains in the bag.  Maybe I should just toss it.  Somehow, however, that act strikes me as being significant in a way I don’t feel like confronting.

Time to think about preparing supper.  Will pick this up later.

Sunday night. Watched a repeat of Sherlock on PBS.  Forgot how the series had fallen in love with special effects to reveal inner turmoil.  Find the technique somewhat distracting and irritating.  I prefer my Sherlock straight up.

Will try to pick up where I left off and see how far my limited energy tonight will carry me.

Seeing that handicap placard in the car behind me, and recalling the one we still have now in a paper bag rather than hanging in our car encapsulates the then and now mixture ever present in my mind.  However, that binary formulation is a little simplistic

Because the then, itself, is composed of various layers.  There is the then of the time before Carol got sick.  Objects reminding me of that then are all over the house, in her towel still hanging on the rack next to mine in the upstairs bathroom where I shower, in her glasses, which just the other day I took up to her dresser after they had been lying on the cocktail table in the living room for the past year and more since it became clear that they were no longer needed, in objects small like those and large like the piano she used to play.

I could make a very long list of such objects.

Or in the occurrence in some context of a particular word that resonates because of its association with the Carol of then.  For example, in a crossword puzzle the answer to one of the clues was “gist.”  Whenever Carol was trying to puzzle something out, she would say she was after the “gist” of the thing, as though she was seeking the hard kernel of fact or truth hidden somehow from her grasp.

Or a different kind of word association, such as reading in the daily newspaper’s column that gathers tidbits from a century ago, the name of Frank Edgecomb.  He was Carol’s grandmother’s first husband.  His family built the farmhouse in which Carol grew up.  He was not, however, her grandfather.  He died in the great influenza epidemic, and Carol’s grandmother remarried the man who became her grandfather.

But Frank was a presence in our house.  On the shelf over our bed is a book I bought for Carol about that influenza epidemic, and there is a picture of him on a shelf of the bookcase in the bedroom.

Perhaps more poignant are those things that mark the responses to the increasing debilities of her disease, such as the handicap placard, but also the grab bars in various places in the house, the walker, the shower stool, and the shower bench, the white plastic ruler sitting on the little table between the chairs in the green room, which we thought would enable her to keep her eyes focused on a line of text so that she could continue to read, these and others like them, signposts along the way toward the hospital bed in which she now spends a good portion of her life

Will try to wrap this up next session by moving into the now into which these objects intrude like guests overstaying their welcome

Tuesday evening after an eventful day.  The morning was ordinary, rising, breakfast, checking in with the world large and small.  Once the relief aide arrived, however, things got ta little more intense.

I had squeezed in a necessary appointment with my attorney to sign the papers setting up the trust.  Of course, that bit of business took longer than I had anticipated as I should have known would be the case based on previous life experiences in which I had spent  time conducting legal business

After leaving the attorney’s office, I still had the week’s grocery shopping to do.  Although I accelerated through that task I could not find, as usually I did, time for lunch out.  So I came home, tired and hungry and irritated.

Irritated because the Pandora app in my spiffy new Camry refused to load the program.  And worse, as I fiddled with it, it froze in its loading mode and blocked all other audio inputs from working, so I had to drive home in silence

I had a little rest before the speech therapist arrived to check out Carol’s swallowing.  More of that below. 

After she left and before preparing supper—frozen dinners for both of us—I addressed the Pandora problem in a long telephone conversation with Toyota’s tech support only to learn finally, after all strategies failed, that Toyota was aware of, and trying to find a solution to, the problem in the app that is part of its Entune suite.  I took small comfort that the problem was now out of my reach.  The tech gave me a work-around with which I had to be content.

The visit from the speech therapist was in recognition that difficulty in swallowing is a predictable occurrence in the course of the progression of Carol’s disease.   On the advice of the nurse practitioner some time ago I began adding a thickener to her liquids to prevent them from eluding the flap that keeps them out of her lungs.  Anything that doesn’t belong there that gets into the lungs is likely to lead to pneumonia.

But aside from liquids I had noticed that occasionally solid food would get caught in her throat going down, producing a coughing fit and once or twice the forcible expulsion of whatever had been trapped going down.

My daughter Tracy, who in her practice as a malpractice attorney has become aware of danger signs, had encouraged me to see about having a swallowing test administered as she has seen performed in a hospital setting

It turns out that kind of test demands a hospital setting.  But the therapist did  have Carol drink both thickened juice and straight water and observed how her throat managed these.  She did not see anything alarming.  I also told her what kind of food she ate without problems for the most part, such as chewy protein bars.

All of which leads to turning this line of thought into a positive direction.  Belatedly, I had realized that part of Carol’s problem was excessive phlegm in the throat.  This should have been apparent sooner.

Because I have the same issue, no doubt caused by all the dust and mold in this century old farmhouse.  I find myself blowing my nose throughout the day.

To clear the mucous.

Carol cannot blow her nose.

My theory, confirmed by the therapist, is that the mucous drips down into her throat, or perhaps just gathers there, where it has no place to go and where it becomes a kind of food trap.  Supporting this idea, again from my own experience, is that I occasionally have coughing fits from bits of  food caught in my throat.

I recalled that my physician some time ago had recommended Claritin for my running nose.  I had forgotten that.  I found we still had some pills.  I began giving them to both of us, once a day.

I blow my nose with less frequency.

And more important, occasional difficulties with trapped food bits have almost disappeared.

That is the beginning of the positive light in our situation.

About done for the night.  Will resume with relating a more significant improvement.

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