Two Steves

Near midnight after a mixed day, half irritating, half enjoyable.  The irritations involved dealing with caregiver relief scheduling difficulties and insurance reimbursement issues.  Spent my morning dealing with both.  I felt for a while as though I were again the college administrator I once was, sitting at my desk, fielding problems as they arose.  I am good at that kind of work, but do not want to do it now.  The pleasure was my Tuesday afternoon lunch, which provided lively conversation on topics both trivial and important.

Late as it is, I want to work on this post.  I wrote it as a draft some time ago, and think now would be a good time to publish it.

The most difficult then vs. now tug of war in Carol’s mind for me is the one where she prefers her memory of me to the actual, present-day me.  On more than one occasion, she has consistently demanded to see her husband when I have been sitting right next to her, even holding her hand.

At those moments, I suppose, if she recognizes me at all, I am her caregiver, the guy who attends to her needs.  I can insist, as I have done, that the Steve she is remembering is the same Steve talking to her at that moment, but she is not moved.  She looks at me as though I have been talking in a foreign language, or if not, have been saying something so palpably false that she need not give my assertion a moment’s thought.

What this tells me is that her long-term memory is far more vivid than any present reality.  She seems to have, in fact, a tenuous grip on what I’ve been calling the here and now.  Why this is so, is perhaps because her brain simply does not retain much memory of the immediate past by which I mean minutes before the present moment.  It’s as if every moment in the present is a new dawn with no antecedent to provide context.

This might be a bit of an exaggeration but not much.  She does seem to retain memories of things that have bothered or annoyed her.  For example, at meal times, which she continues to take while still on the couch, I generally get her into something like an upright sitting position.  I do this by first swinging her legs over the side of the couch, and then gathering her in my arms and lifting her until she is at least mostly upright.  We repeat this procedure two or three times a day. And apparently it has left something of an impression in her brain, a newly minted memory, for she will react by saying, depending upon her mood, either a simple “OK,” or “not again.”  In either case, she recalls what we are about to do.

But this is the exception.  More generally is the rule that a minute or two after any incident, snippet of conversation, or activity, it is as though it never happened.

So, I can understand why she denies that I am who I am, preferring to dwell on her stored memory of who I was.

But understanding it does not make it any easier to deal with, especially when she is in some sort of distress.  There was an incident involving the physical and occupational therapist combining to work with her to see if putting a weighted vest on her would enable her to resist the rising panic caused by getting on to her feet, and in so doing they met significant resistance.  She became very angry and fearful at the same time, and insisted that she wanted her husband.

That I was standing right in front of her did not satisfy her.  I was not the husband she remembered.  I was this other guy.  On occasion, she acknowledges that there are two Steves, giving me the small victory of my name.

But she so clearly prefers the other Steve, the one she remembers.  I try to close the gap between the two by citing the facts of our lives together, where we met, when and where we married, where our daughter is now living in Minnesota, and so forth.  She easily accepts that all of that information is correct, even offers a bit of a smile as her mind fastens on to this or that detail.  Nonetheless, she does not connect any of it to me.  All of it belongs to that other Steve, and there it will remain.

It is all so understandable.

And, at the same time, maddening.

A thought occurs to me.  I see it but don’t want to deal with it.  Still, it will come back.  It must.

There will be a time when there are no Steves.


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Like Sand Through My Fingers

Sunday night. I just watched an episode of Poldark on Masterpiece Theater. We always watched the PBS shows on Sunday night, Downton Abbey, of course, the mysteries, Sherlock Holmes, whatever was on. We would have after dinner snacks while we watched, usually humus and crackers, or sometimes those soft pretzels like those sold off carts back in New York, only these are frozen, thawed in the microwave after adding the salt from a packet. But tonight I watched alone, my company the dog who was probably disappointed there were no crumbs to be gathered from the floor.
Herein is the conflict I wage with myself. The more I fully accept the role of caregiver, the more I must let go of the shreds of our past lives together that remain in the occasional smile, or squeeze of her hand in mine, the good morning greetings we exchange during which I tell myself that she knows who I am, the snippet of conversation concerning our daughter now living in Minnesota, all these momenst pushing against my exchanging, in totality, my role as husband for that of caregiver.
It is not that I don’t want to take care of her, as best I can. Of course, I do. We used to joke that given the fact of my being ten years older, there would come a time when she would push me around in my wheelchair. Her disease has reversed that prognosis, a prognosis that did not include my losing my cognitive ability as she has. The idea was that my body would have weakened, not my mind. In our present here and now, her body is still quite strong as evidenced by the deep bruise she left on my bicep when in a panicked fear of falling she clutched me there.
She was always physically strong and capable, the first woman shaker driver harvesting cherries among the orchards on Old Mission Peninsula, competent behind the wheel of any vehicle, a splendid driver and horsewoman, a serious walker, and even more recently before her cognitive decline, she was out there shoveling the edges of our driveway missed by my snow blower.
I don’t think she has lost much of her strength. What she has lost is both the control of her muscles, and, more importantly, the confidence to use them.
Her continued physical strength contributes to my difficulty in letting her pre-disease self go, and accepting her here and now self, with all its difficulties. Part of me, a persuasive part, insists on trying to retain some sense of normalcy in our daily lives.
That is like clenching my fingers around sand that sifts through my fingers.
It can’t be done.
But the friction of the hard grains against my flesh is its own reward.

I have yielded to some realities. Some time ago, I bought her pants in a smaller size to recognize the weight she has lost, a purchase aided by the advice of my eldest daughter then visiting with her family from New York. Those pants now rest, neatly folded up in our bedroom. I no longer clothe her every day. Given her incontinence and inability to be easily transported to the bathroom, it just makes more sense, as my younger New York daughter suggested when she visited a little time after her sister, to keep Carol in night clothes. So, I bought her two new night garments, appropriate for fall weather, and will add to them a couple suitable for the cold winter approaching.
But, to this point, I have not given in to the suggestion of renting a hospital bed, which would make tending to her easier than her current residence on the living room sofa. I see that advantage, but it is insufficient to overcome the feel of a hospital room that the bed would impose on our living space.
Presently, we both sleep on our L-shaped sectional, and I savor the physical proximity, even though we are not side by side. I hear her breathing, and yes, I also hear her responding to auditory hallucinations, and sometimes, a frightened call prompted by a sense of falling even when she is lying flat on her back. In the morning, I bend myself around the corner of the L to get near enough to her to hold her hand, or stroke her cheek. And, yes, she sometimes rejects those gestures as an unwanted intrusion of the here and now into wherever her mind has carried her, but most times she is accepting, and I feel comforted.
For the most part, our lives follow the same dull routine. In this regard, I am reminded of an observation offered by Thoreau toward the end, I believe, of Walden concerning how easy it is to fall into a repetitive pattern. He notes, to his surprise, how quickly and beneath his conscious notice, his feet produced a path, or perhaps more to the point, a rut between his cabin and the pond as he traveled back and forth each day for his ablutions.
And so it is with our lives with very little variation from day to day. But every once in a while something occurs to me that pushes its way through the dull routine and obliges me to deal with this vexing conflict between the past and the here and now. Such a moment was prompted by my seeing in my email inbox a notice presenting the agenda for the upcoming meeting of the local historical society.
Even before we moved here from New York, Carol’s father, a local historian invited us to come along to a meeting of the historical society. Although I was then still just beginning to learn how to navigate the culture shock caused by introducing my Brooklyn formed self into the wildly different mores of rural northern Michigan, I have always enjoyed learning about history wherever and whenever the opportunity presents itself. Carol, although she never said so, savored the chance to share her fathers’ interests and join them to her own.
Once we became resident here, we quite naturally continued attending the society’s meetings. We were, in fact, the only members of Carol’s extended family who did so, and continued our participation in the society after Carol’s father lost his battle with pancreatic cancer. And then, not for the first time, in fact in another instance of a familiar pattern in my life according to which I, without any obvious ambition, wind up in a position of leadership, found myself president of the society.
All of which is preamble to the moment when I saw the meeting announcement. I decided I would like to go, mingle again with the folks I had not seen for some time, and just get out of the house for a while and leave my caregiver responsibilities for a couple of hours. None of that gave me any pause. There was, of course, the issue of finding someone to stay with Carol. That, in itself, did not raise my conflict.
What did cause the conflict to raise its troublesome head was what should I tell Carol. Deep into our rut, I never go out in the evening. And I always tell her where I am going, even if it is to walk across the road to our mailbox. She would love to go, I thought, and would be seriously disappointed if she were to stay home while I attended a meeting of the society her father had helped found, and which she had served as co-editor with me of the organization’s newsletter, and had, in short, been more strongly invested in the society than I had been.
I was trapped in the past, and unable to see myself in the here and now. My concern about her feelings was based on the woman she used to be. The woman she is now hardly remembers the society, and even if she were upset at my going, as unlikely as that would be, she would in all likelihood not remain unhappy for more than a few minutes as this incident like all others simply would not find a foothold in her memory.
When I did tell her where I was going, she offered a glimmer of a smile and nodded.
Unaware, she too, was so deep in the rut she could not see over its top.

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Publication Correction

“”Like Sand Through My Fingers” was inadvertently published early, and has been rescheduled for its correct weekly date tomorrow, November 11th.

To keep things moving along for those who have already seen that post, I am scheduling the next one “Two Steves” also for November 11th.

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Who Is This Person?

Writing on my laptop after a late breakfast.  Carol is dozing on the sofa.

In a unique way, as only Kafka can do, his “The Metamorphosis” explores the question of a person’s identity.

Its first sentence announces without preparation or fanfare that Gregor Samsor one day wakes up in the form of a giant beetle. Within this form his brain is still human. He awakens from “troubling dreams” in his new shape, but his mind is fixed on his getting ready for work as a traveling salesperson. He must, as usual, catch his train.
Thus the story starts. It proceeds from there with Gregor retaining his human brain while his family figures out how to deal with his transformation. Their question, no doubt, is whether they should consider that physical being Gregor. If not, what?
Read the story here if you want to see what Kafka does with it. His concerns in writing it are far different from mine are in putting it into this context. I do that only because it is an exact negative image of my situation where Carol’s body, except for some weight loss is exactly as it was while her brain, and therefore her sense of herself and her surroundings are not.
The question raised by the story that I find so apt is what we mean when we say, pointing at a person, “This is Joe or Jane Smith.” Do we mean the physical presence we are looking at? Surely, that seems right. But what if the person with that name no longer knows who he or she is? Or perhaps more to the immediate point, what if this person doesn’t know who you are? Or where he or she is? Or what year it is? What if, in fact, this person’s grasp of the here and now is largely gone.
If the person’s grasp of the here and now is entirely gone, if the person is living in an evanescent present moment that disappears from memory as soon as the moment passes, then it is somewhat easier to begin to think that the person’s identity has been compromised because for a person to have an identity we usually assume that some self-awareness as well as some relationship to the external world is necessary.
The question in that sense goes in both directions. Who is the person within the body of my wife? What is my relationship to her? And from an egocentric point of view that question might even be more compelling. Am I still her husband, or am I just another caregiver, albeit one who is her most constant companion?
Who is this other person living with me in our house? Is it even right to say “our” house? I don’t think that is begging the question.
It is the question.
Clearly, there is a legal answer to this question. This person is the woman I met thirty-five years ago in Suffolk County on Long Island, NY, who added my last name to hers when we married four years later, and with whom we have had a daughter now living in Minnesota. The clarity of the legal point is buttressed by the fact that I have begun acting on her behalf based on the power of attorney document she signed fifteen years ago when nothing like the present situation seemed remotely in view, signed just as a precaution against that faint possibility, which has now become our everyday reality.
So, the legal answer to the question is immediately clear as far as it goes. But it doesn’t go nearly far enough.
As if to underscore that point, Carol frequently says in a most plaintiff way that she wants to go “home,” which I take to mean that place her memory remembers, not the physical structure we together bought almost sixteen years ago, the title for which bears both our names, and in which we have cohabited until the present moment. The fact that this house bears the unmistakable imprint of my wife’s tastes and interests is palpably obvious to me or anybody who knows me. Left to my own devices the décor would be decidedly different. The fact that she no longer recognizes all the touches she added only underscores the maddening pain her disease inflicts.
Even more troubling on an emotional level for me is that she most definitely knows my name. She calls out “Steve” whenever she is frightened, or troubled, or just want to talk. But it is not at all certain that she associates that name, so firmly fixed in her memory, with my actual physical presence. I often sense she is disappointed when I show up in response to her summons.
As though she were expecting somebody else.

I am some kind of presence in Carol’s life, one that probably does not come into clear focus in the haze of her flawed perception of the here and now.  On the other hand, the Steve of her long-term memory is still sharply etched

I recognize this disparity between memory and immediate reality.  But emotionally, I received it as a knife twisting into my heart.  How could she be so indifferent to my feelings of loss, even of betrayal when she fails to acknowledge me as her husband of more than thirty years?  Of course, that is an absurd complaint on my part.  But it is genuine nonetheless.

Motorcycles just thundered by on Center Road, as they often do on this Peninsula.  I check Words With Friends to see if my niece or grandson have made a move.  Neither has.  I remember today is Yom Kippor. Unlikely either would be playing today.  As a largely non-observant, secular Jew, living in an overwhelmingly Christian place, it is easy for me to forget this most important Jewish holy day. Especially since I no doubt have a lot to atone for.

A genuine but absurd complaint.  As ridiculous, in its way, as Gregor Samsor, now a giant dung beetle, wanting to pick up his case of samples and catch his usual train.  Dealing with this dread disease puts you in the world of the absurd where there are no answers.  I suppose you could say that the one answer to a caregiver like me is to acknowledge that my job is palliative care, to make life as comfortable as possible for the patient.

That is all well and good.  But there does not seem to be palliative care for the caregiver.


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Speaking the Unspeakable, A Contemporaneous Journal

In Better Days

You see the distracted pedestrian step off the curb without looking for oncoming traffic. You witness the startled face of the driver of the car barreling down the road, hands tightening on the steering wheel, eyes looking for a way to avoid the inevitable. There is none, the brakes squeal, horn blares, and then there is a thud.
This is an illustration of my life at this time.
Every day, I observe this accident scene unfold in excruciatingly slow motion. My wife Carol is the pedestrian. The driver of the vehicle bearing down on her is her disease.
She has dementia.
That is a scary, if not evil sounding word. Its root comes from the Latin combination of de, out of or away, and men¸ to think. Putting them together you get “out of the mind,” and by extension “raving” or “mad” in a typical dictionary entry.
But those are inaccurate, at least in my wife’s case. I claim no expertise beyond that. She sometimes expresses anger, but she does not rave. That term is a melodramatic overstatement, and, I might add, it is pejorative. And she is not mad or “out of her mind,” whatever that means. In fact, she lives very much in her mind. The problem is that from within her mind she is not usually in strong contact with the here and now. Rather she seems to live among random long-term memories, which are quite accurate, and thought that appear to be the product of the wonderful imagination that enabled her to be a prize-winning writer of short stories.
Moving from etymology of the word to its medical meaning does not produce a great deal of clarity. The expert neurologist in Ann Arbor we consulted was not quite sure exactly which label to put on my wife’s disease since dementia describes the range of symptoms of a malfunctioning brain, those symptoms varying depending on which part of the brain is impaired. Impairment to different parts produces different symptoms, indicated by different names, such as Alzheimer, Parkinson, or frontotemporal. In my wife’s case, apparently, the neurologist could not pin down with assurance which part(s) of her brain were being affected, thus the inability to label with precision.
We could have returned to Ann Arbor to let him try again, but that seemed pointless. The two hundred fifty-mile trip, plus a night in a motel, and then back again would have been a lot of stress for no particular gain. Whatever the type of dementia, the disease is incurable. The same medications, of limited use, would be prescribed for each of the subcategories.
And I don’t care what the label is. I live with the symptoms.
In the impending car crash analogy, I note that the pedestrian does not even look up despite the blaring horn and squealing brakes. Rather she totters along, does not look at the steel bearing down on her. And for that matter, there is no horn nor squeal of brakes. All is silent.
She is unaware. She no longer properly processes images or sounds brought to her brain by her still functioning eyes and ears. These organs continue to work reasonably well. But a buildup of protein impedes the passage of their information in her brain.
That is what causes her dementia, her lack of connection to her environment, her inability to retain in her short-term memory what she does perceive, or even what she thinks, or says.
So, let’s change the terms of the analogy to something else, to, let us say, the representation of the cognitive disassociation with the here and now, a withdrawal into shards of old memories and fragments of imagined narratives.
It is important for me to remember, and to note here, that almost anything one can say must not be understood as absolute or constant. It is a truism that the degree of impairment and resulting symptoms does fluctuate from day to day, or even moment to moment. Its overall dimensions and direction, though, are clear enough.
Finally, the analogy suggests speed, whereas dementia works its terrible chemistry more or less slowly. In my wife’s case, faster than expected. More of that later. And the climactic thud of the crash, steel mashing flesh and bone is nothing like the gradual disengagement of the mind as it retreats into itself, progressively unable to do the simplest everyday tasks. Also, the driver desperate to avoid the collision is nothing like the unknown agent that causes brains to cease functioning. In fact, the driver of the disease is best understood as disinterested, perhaps even bored, with its destructive power. And that is its ultimate horror.
Thus, this analogy takes us only so far.
But in the absence of anything better, it is all we have, and since I am trained in, and for many years taught and wrote about, literature, my mind turns to it for a way to grapple with this situation, to find a way to make some sense out of it. To reason with the unreasonable, to speak the unspeakable. And in that respect, literature serves up a wonderfully apt guide in the person of the brilliantly weird Franz Kafka, one of whose stories is peculiarly apt to get one’s hands around this disease, to squeeze hard, to hold it still long enough to begin to understand. And if not to understand to find some peace, to be able to stop clenching your fist and howling.
Supper preparation calls.  Kafka will have to wait.

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