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.

“No.”

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.

True.

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.

“Oh?”

“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?
“Tablets.”

“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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Time

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?

Perhaps.

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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Did You Miss Me?

Tuesday late afternoon.  Expecting Ryan who has been working a lot of hours in the restaurant in town where it is the busy tourist season.  He came by yesterday about this time to mow half the lawn, and will be back today at about the same time even though Tuesdays are usually his off days.

He would not have been able to do any mowing yesterday if it hadn’t been for the coke remedy suggested by Jim Keely whom I first hired shortly after we moved in to construct floor to ceiling bookcases in our dining room, and whom I now call when I confront any kind of fix it problem.  He suggested cleaning the battery and starter terminals with coke.  I did.  It worked.  Apparently others are aware of this odd sounding remedy.

Wednesday late after an uneventful day.

A brief but provocative conversation this morning.

After serving Carol her breakfast, and feeding the dog hers, I started fixing mine.  I realized that in my grocery shopping yesterday, I had forgotten to get milk, this even though I have downloaded a very serviceable shopping list app.  I discovered, however, it does not work if you don’t enter an item on it.  So although I knew I needed milk, I didn’t see it on the list on my phone, so did not buy it.

All of which is preface to my deciding that because I really wanted milk for my cereal,  I would hop in my car and drive to the market, some four and a half miles down the road.  I can usually make it to the market and back in about fifteen to twenty minutes and feel reasonably comfortable in leaving Carol alone in the house with the dog for that length of time.

Carol was sitting in her chair in the living room with classical music from the Interlochen station playinh. “I’m going to the store,” I said, “and will be back in a few minutes.”

She didn’t respond, which is not unusual.  In those situations, I do not know whether she has processed what I have said.  Perhaps she was so into the music, or even somewhere else in her mind, that my words did not register.

No matter.  She was securely belted into the chair.  Nothing bad was going to happen in those fifteen or twenty minutes, so off I went.

Even though I had to cross a double yellow line to get by a one man cherry shaker doing about five miles per hour, I was back within those fifteen minutes.  I walked into the living room, leaned over Carol, kissed her forehead, and said, “I’m back.”

At first she did not respond.

“Did you miss me?” I said.

And here’s the point of my describing this incident.

“Yes,” she said.  “I did.”

Let’s take a closer look at that response.

The first word, the affirmation, does not indicate much.  She could have recognized that she was being asked a yes/no question, and so picked one of the two appropriate responses.

But her unprompted continuation offers a more provocative possibility.  It declares that she knew what I was asking, and wanted to be sure she told me that.

Now, I don’t want to push this analysis too far.  My question was not serious, having been gone for so short a time.  My voice might have indicated that I was teasing her.

But I will go this far in the context of my attempts to imagine her brain’s activity to suggest that she moves back and forth between a connect and disconnect with the here and now.

As do we all.  Only for those of us not afflicted with dementia we are much more in tune with the hear and now, even when our minds, or part of our minds, are somewhere else.

I guess my question for Carol is where her mind is when it is so fully disconnected from the here and now.  It is somewhere.

But where is that somewhere?

Sunday night after a quiet weekend interrupted by virtually no human contact.  I believe I say that almost every time I sit down to work after a weekend.  However, the repetition doesn’t make that observation any the less true.

And as usual, the only face to face interaction this weekend occurred on my Sunday morning trip to the store.  I arrived a little later than usual, partly by design, and was rewarded by finding out that the Times had just arrived.  I miss reading from the physical paper rather than following links on my computer screen.  I find I dig deeper when I have all those sections sitting in my lap.

While in the store I checked, as I do only very occasionally, to see the status of the copies of my books being offered for sale, hoping to attract the attention of the summer visitors as the locals have already had ample opportunity to purchase them.  I noticed that the books were hidden behind a cart laden with ears of corn.  There is a metaphor lurking in this situation, but I haven’t discovered it.  Anyway I alerted the regular clerk who moved the cart so that my titles were again visible.

I have been exploring what I imagine to be the interior of Carol’s brain.  I have concluded that it is an active place, a workshop of ideas, and/or memories that prompt responses such as a sudden, inexplicable burst of laughter as if she had told herself a joke or just remembered something amusing.  At other times, she seems to be forming words but they are not clearly enough articulated for me to hear them.

What I want to add to this exploration is recognition of  her marvelous imagination that provided her the material for her stories.  I think it likely that her imagination continues to generate ideas even in her present impaired state.  Why would it not?  Why would it shut down?

Quite often her facial expression certainly looks as though she is deep in thought.  True, I sometimes think she is focused on the music that is coming from the radio.  But that is not adequate explanation for that expression, which also does occur absent any music reaching her ears.

Something very intense and clear is going on behind that expression.  I will never know what that something is, can’t even begin to make a guess.

Other than to be reasonably sure that whatever it is, it is the product of that same powerful imagination out of which arose her stories.

And speaking of her stories leads to my very recent decision to see about getting them collected into a book, a project we had, in fact, been working on when she got sick.

Tired. Will pick this up when next write.

Tuesday night.  Usual shopping day Carol has been eating with more appetite these past few days, and that is a good thing.

Yesterday, I got on the treadmill for the first time in probably almost two years.  I have a felt need to get back into regular exercise and hope to be able to continue.  Part of the problem is the location of the treadmill in the furnace room in the basement.  I like to exercise with music and I’m concerned about being down there with my music on for forty-five minutes or so.  I know I am exaggerating the risk and might even be using it as an excuse not to exercise.  A more legitimate impediment to my doing exercise is lack of energy or the need  at times to just chill out.  I have checked into buying a folding stationary bike to be used in the living room within sight of Carol’s bed.

All of this speaks to the problem of finding my footing in these difficult circumstances.

I have begun making inquiries concerning the publication of Carol’s stories by sending the beginning of the MS containing the first two stories to readers associated with Mission Point Press, which published my recent books.  Not surprisingly both these readers wrote back with strong praise for the stories.

As they should.

I will also get in touch with another well-established local writer who has connections with a university press, which would probably provide wider distribution and perhaps more recognition.

Which these stories very much deserve.

Returning to the question of Carol’s mental activity now, I wonder if she is still exercising her imagination to write new stories.  Sometimes it seems that she is deep in thought about something.  If I need her attention on those occasions I have to call her name a couple of times until she starts, and then responds with a look on her face as though I have pulled her back from the place to which her mind had carried her.

Other times, she suddenly laughs as though having remembered a joke.

Or perhaps has just created one.

Of course, I will never know.

And I deeply regret that there will not be any more of her wonderfully imagined connections to the natural world in which she grew up, the waters of the bay, the farmland carved out of the rolling hills, the flowers and fauna, all of which was so vivid in her stories that the reader is transported into that world.

That world is peopled by the characters she places there, Native Americans, some wise, some comic, or the young farm girl in some of them, no doubt a stand in for herself looking to move out beyond the borders of that environment.

And always a search for, and insistence on, basic decency, her declared intention being to use her stories to instruct us on how we should live.

So sad that,at best, the new incarnations of that fictional world remain locked in a mind that can no longer birth them into the present for us to enjoy and appreciate.

In a strange kind of way that thought, the idea that not only I, but the larger world, suffers a significant loss as a result of her disease, provides a level of comfort to me.

Being robbed of her talent the world can join me in regretting her sliding into the unreachable depths of dementia.

Small comfort indeed.

But I’ll take it.

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Pulling Back the Curtain

Saturday late afternoon on a warm and muggy day in mid July.  The weather has been hotter than I recall it being during the fifteen previous summers we’ve lived here.  Rocco is across the road spraying loosener on his trees preparing them to be harvested by shaking.  Carol was the first woman shaker driver on the Peninsula.

She is sleeping now, and I have some time before preparing supper.

Music playing from Interlochen, and I find that I am wearing an ancient  T shirt, on the front of which is the image of a grand piano and some bars of music, and on the back the word “Dad.”  Clearly, the shirt was a gift from one of my daughters, but I no longer can recall which.  I had forgotten I had the shirt until this morning when I found it on the bottom of the pile of possibilities in my drawer.  It feels a little tight, so perhaps I was a bit thinner when I received it.  Or it was not correctly sized by the buyer.  Or it shrank.  None of which helps identify the giver.  But what is clear, the choice of the images reinforces the centrality of music in my life.

Which leads to a thought I’ve been playing with for the past few weeks.  Some time ago, Kyle said something to the effect that he would love to know what was going on in Carol’s mind.  Of course, on a basic level, none of us ever fully knows the workings of another person’s mind.  We guess based on all kinds of factors, and in the best relationships we probably come pretty close to getting what our mate is thinking.  In those relationships, we soon enough find out if we were right or wrong.

But Carol’s dementia provides a whole different, much more impenetrable barrier, made even more so by her loss, for the most part, of the ability to articulate her words.  She still can provide one word responses, mostly of the yes or no variety, and even the occasional full sentence, as one of the aides reported her saying “I like watermelon,” when being offered that as part of her lunch.

To further complicate matters, as Kyle also explored, it is not possible to know what exactly she sees.  I have known for quite some time that the communication between her eyes and her brain has been compromised by the disease.  That is why she can no longer read.  And why when on the occasions I have her with me in the television room, she listens, but does not look at the screen.

Yet, she still does seem to be looking at things, such as at my face when I lean over her.  Waving a hand, as Kyle once did, in front of her eyes produces a defensive closing of them.  So, I can conclude that the images sent to her brain by her eyes do stimulate a response, but the nature of that response is not at all clear.

Perhaps some sort of sophisticated neurological testing could provide an answer.

Or maybe not.

These thoughts are just the beginning of an exploration of what is going on in Carol’s mind.

Moving away from the visual to the auditory reveals a clear difference.  She does process auditory cues, be they in the form of words, or music.  In terms of the former, she does respond not only to remarks or questions aimed directly at her, but also to what she might hear from others’ conversation or even the words floating out into the room from the television or radio.  I am also sure by observing her facial expressions, and occasional movements of her hands, that she responds to music.

And still I am only scratching the surface of the question.  Deeper questions remain.  Kyle has talked about, for example, her loss of the executive function of her brain, so that more primitive impulses are no longer constrained and emerge to create their own responses.  Her fear of falling might arise from that situation.  The loss of memory in dementia is clearly another obvious factor.  But what replaces those lost memories?  Is each day a new experience, and if not, to what extent is it not?

In raising these questions, we are trying to get inside the dementia.

Which, no doubt, is impossible.

I’ve taken this as far as I can for now.  Perhaps I’ll dig further.

Or perhaps not.  It is a scary place to be.

Monday night.  Carol snoring, dog sleeping.  Just watched Netflix documentary Evil Genius about a most bizarre murder/bank heist case involving a pizza delivery man with a pipe bomb fastened around his next as the unwilling bank robber in one plot line, and a murdered man found in a  freezer on another.  Somehow the two plots will meet and all will be revealed.  Too weird to be instructive of anything but distractedly interesting.

And a little distraction is a good thing.  I take it where I can find it.

As I often do, I just want to start what follows, enough so I will be able to let it percolate  a little bit more, and then wade into it.

In my attempts to understand Carol’s dementia, to imagine what it must be like from inside her head, I have been thinking the word“fog” describes her mental state.

But it occurs to me that might be wrong, and therefore misleading.

A fog suggests an environment lacking clarity, where things cannot be seen easily, or perceived at all, if the fog is thick enough.  And because Carol often does seem somehow to lack understanding of where she is, the word at first glance seems apt.

But I have been observing indicators that suggest otherwise.  It’s not so much an inability to perceive her present circumstances, but rather that her mind is elsewhere.  And that elsewhere might be perfectly clear to her.

For example, sometimes when I am offering her food to her, she seems unaware that eating is her immediate activity.  I then say her name with some emphasis, and she starts as though she is being brought back to the present moment, and takes a bite of the piece of toast I have been holding in front of her mouth.

A start.  Wading into deep waters.  Don’t want to drown.

Wednesday afternoon.  A very noisy and somewhat busy day.  Outside, a constant stream of farming related vehicles, fork lifts, tractors, and various sized trucks, all part of the ongoing cherry harvest  In addition there are the tourist vehicles in an unending procession  north to the lighthouse, and south back to town, as well as the mostly quiet packs of cyclists, whose riders’ voices sometimes carry into the house as they zip by—all of it almost making me impatient for the quiet of winter when the only vehicles are the snowplows roaring by knocking down the occasional mailbox

Almost.

The phone, too, has been ringing all day, telemarketers and political robo calls as we approach primary day.  Among these I finally received one of those scam calls I’ve read about, an automated voice in the most somber tones instructing me that it is from the IRS, which has issued an arrest warrant for me, and I’d better call the specified number.  Immediately, or be ready to be fitted for an orange perp suit.  I don’t know whether I should be amused that I have reached the age where I am deemed a target for such a transparent fraud, or insulted that it is thought I would fall for it.  In that vein, I also received a call from somebody who claimed to have heard I was interested in getting my book published, and offered me some help in doing that.  Having published fourteen books, I felt like calling this one back and suggesting he update his list.

Friday afternoon, and I am in the community library again for the first time in weeks.  None of my lunch companions were available, so after dining alone, and with more time available, I came here to do a bit of writing.  I first edited the blog that will post tonight—I’ll look at it one more time later—and now I’ll see if I can move on into my speculations about what it might be like being in Carol’s head.

The library is unusually active, perhaps because of the book sale in an adjoining area.  There are a few patrons checking the shelves.  A couple of voices in animated conversation float back here from the front desk.  To my left, a businessman asks if it is ok with me if he makes a quick phone call.  I assure him that he can.

I note that there may be a tactile component to Carol’s connection to the here and now.

For example, she seems to enjoy holding hands.  She always did.  Now, when I take her hand, she squeezes mine as she used to do, and does not let it go easily.  If I offer her my other hand, she  takes it and holds both with some pressure.

I do this most usually when she is lying flat on her back in bed, so I cannot think she holds on to my hands with such intensity because she is afraid of falling.  When I release my hands from her grip, she remains comfortably lying there as she was before.

So, what is going on during this simple activity?

More noise coming from the front of the library.  It is almost getting to be distracting, even for one such as myself so used to blocking out background noise. A toddler’s complaining voice rises above the din.  In spite of the distraction, I am happy to see so much activity in the library.

Of course, I can only guess.  Perhaps the feel of my hands in hers gives her some sort of comfort or security.  I do not think, although I would like to, that she knows the hands holding hers are mine, that they belong to the Steve she seems sometimes to still associate with me, or  her memory of me.

In a similar fashion, when I have her sitting on the edge of the bed preparatory to helping her stand so that I can guide her the couple of feet to her chair, she first grabs my shirt or pants.  That action clearly arises out of fear of falling.

But then when I put my arms around her in a kind of an embrace so that I will be able to get her onto her feet, she rests her head on my chest.  She is calm at that point, perfectly comfortable.  It is hard to reject the idea that she knows she is in my arms as she had been so often for so many years.

I talk to her throughout this process.

But she does not vocalize anything with the exception of an objection to being turned around on the bed as I get ready to help her sit up.

So I am left guessing.

I conclude a couple of things, recognizing that all of this is the purest speculation, not a little colored by what I would like to think is going on.

First, although there might be a little element of fear of falling throughout I do not think it is significant.

Second, she seems to enjoy the physical intimacy, particularly of my arms around her.

Third, and most important, throughout this process, she seems  to be in the moment.

Does she know who is helping her?

I can’t answer that.

Does she appear to be confused?  In a fog?

No.

When I ease her into her chair, and I am no longer touching her, then, she looks a little confused, as though trying to orient herself to where she is.

I can add one other factor.

The auditory one.

As I mentioned, I talk to her during this process.  I first tell her we are about to have breakfast.  And I indicate the menu.  It always includes breakfast sausage, juice, toast with blueberry jam, and then some kind of fruit, a banana, or melon, or strawberries, or pineapple chunks.

Sometimes I get a response, a little smile, or nod, or even a word or two.  Often, not.  It seems to me at that point, she is not fully engaged in the present moment.

Meaning in her head, she had been somewhere else.

Not in a fog.

Just somewhere else that made more immediate sense than my prattling about the breakfast menu.

Respite time almost up and I have gone about as far as I can on this speculative subject for now. My companion, the business man, is still hunched over his laptop.  I’ll pack up and head home.

Monday night.  It’s raining again, as it has been doing off and on the past few days.  At least the oppressive heat is gone for now. 

Yesterday, in spite of my earlier decision to give up on keeping the piano tuned, I had Brant come out again to fix the E above middle C key.  He did that and more, devising a way to lubricate the action so the keys wouldn’t stick, all the while talking to himself, or his tools, or perhaps the piano.  He loves to talk, about all kinds of things, such as his discovery of a way to plant potatoes on top of the soil.

Given how starved  for conversation I usually am on weekends, the dog being particularly useless in this regard, I was happy to hear what he said on that and various other topics including environmental poisons of which we are unaware.

After he leaves, I sit down at the keyboard and reintroduce myself to Gertrude and her waltz by pecking out the notes in the first few bars.  She does not seem to mind nor does she appear to be happy to see me back.

Not a lot of energy tonight, so I will just try to get back into my thoughts concerning what is happening in Carol’s head.

At supper last night, without planning to do so, I held Carol’s hand with my right hand while with my left I held the fork of food in front of her mouth.  I can’t say why I did that, never having done it before during meals.  I do like to hold her hand because she returns the pressure and sometimes seems reluctant to let my hand go.  On other occasions, she will put her other hand on mine as well so mine is enclosed between hers.

I do not know what to make of this.  Perhaps her actions are no more than neurological responses having nothing to do with any thought process or emotion.  Or maybe they represent her happiness with the flesh to flesh contact.  In that respect, I frequently hold her hand(s) as she is going to sleep, perhaps fidgeting as she sometimes does, and it seems to me doing that calms her down, eases her into a sleep mode as she closes her eyes.

Of course, I can be making too much of some or all of this.

But I am not so sure.

Perhaps these moments of physical intimacy stir pleasant memories.

When I took her hand at supper, I think it was because, as often is the case, her hands were waving about.  I believe at those times, she simply cannot control them.  Maybe I just took her hand to stop it from moving about in the vicinity of the fork with food on it.

In any case, she squeezed my hand and the involuntary motions stopped.

Absent a better explanation, I will permit myself to believe there is some intent on her part to feel her flesh against mine.

 

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