Being a Caregiver

Tuesday night.  Seattle based jazz station streaming into my ear buds.  Went into town for weekly shopping but with first stop at UPS store to send back an incorrectly ordered beard trimmer, one that did not have an adjustable length setting option, and while there also shipped a copy of my latest book to my old Fort Salonga friend, from whom I just received a stack of his films along with a novel.  Also sent to Danielle a Tee shirt decorated by grandson Brandon with images of cats, intended for Carol.

Sometimes a day is punctuated by everyday chores, such as arranging for a plumber to come fix a leaky kitchen faucet, or for Carol’s hairdresser to come out to cut her hair.  And sometime, a chore is less ordinary, such as spending an hour on the phone, mostly on hold listening to all the wonderful services Michigan has to offer, while working my way to a person in the Secretary of State office who will authorize re-sending the forms necessary to provide Carol with a personal identification number, which can be used in lieu of her expired drivers license number for the next time I will file our income tax return.  The form had apparently been sent in late March when I first became aware I would need one such down the road, but it never arrived.

Doing these mundane matters provides a small sense of accomplishment that is largely absent from my life these days.  A very welcome glimmer of normalcy movement, however inconsequential, toward something a little better or as in the case of the personal identification number, necessary.

Before finishing for tonight, as I am tired, I will record one small but not insignificant moment from a couple of days ago and contrast it with a larger non-event.

First the small one.  I was working on my laptop in the late morning researching markets for my writing.  A Google search had brought up a useful list and I was exploring it for a while.  Absorbed as I was in this task, I lost track of time.  I happened to look up from the screen and saw Carol stirring in her bed.  I glanced at the clock and saw we were already a little late for lunch.

I got up from my chair, walked over to Carol, and said lunch would be ready soon.  I added an apology, saying “I was just trying to make us rich and famous, and if not famous, I will take rich.”

She offered a genuine laugh.

Once again, for that brief moment we were together in the here and now.

I knew it would not last, but I savored it.

Now the larger.

Mother’s Day.

How to deal with it.

I could, of course, just ignore it.  Carol would have no idea that it had arrived.  This was the same kind of dilemma I faced with the Kentucky Derby the day before.

I had thought of buying a half dozen roses as I had for her birthday in January.

But somehow that idea didn’t sit well with me.  The best explanation I can offer for my discomfit was not so much that it would probably be a waste of money, but rather that it was a futile attempt to continue a fiction, to pretend that we were still living in a time of celebrating such holidays together that was most definitely gone.

I had mentioned this situation to the aide on Friday.  She offered the very practical suggestion of cutting some of our daffodils, now in full bloom  I believe she is used to being quite frugal, and so was probably drawn to this solution by it being cost free.

At first that idea did not appeal to me.  But after a while I came to see it as a  way of doing something I was comfortable with, probably because it was both fitting and new as I had never cut our own flowers to mark an occasion, although I seem to recall bringing in some of our yellow roses last season.

Sunday morning I did the deed, went out onto the front lawn to the daffodil bed and snipped off enough to fill a vase I had found in a closet.  I placed the flowers on the kitchen table and wheeled Carol in.

I don’t think she actually saw them although I placed them right in front of her eyes.

Yet, I am content that I had tried.

That afternoon our daughter called.  Apparently, she had dealt with the issue from her perspective.  She knew from her own experience that her mother could no longer respond to her as her mother.  But she felt she should call.

So she did.

We had a long, warm and useful conversation,. I filled her in about how Kyle was working with Carol to get her on her feet, at least in a limited way, but mostly we talked about other things, how for the first time in sixteen years I actually happened to look out of the kitchen window when the flatbed truck arrived carrying the bees imported for the orchards across the road, how there was an article in the paper concerning a study of the feasibility of restoring passenger train service to our town, and other such.

It seemed right on Mother’s Day to have a good conversation with our daughter, who after all, is the reason the holiday has any significance for us.

Last note.  As I got into the flow of these ideas, I did not hear the music coming through my ear buds.

I hear it again now as it pauses to provide time for a news update concerning the unrest in Gaza.

The world will be heard, even her in the bubble that is Old Mission.

Thursday night.  Carol asleep.  I am tired.   It seems I am always tired these days.

Which leads me to the idea that has been gestating in my head for several days.  I’ll see what it has to offer, or at least start so to do.

I remember hearing some time ago that people in my situation, that is caregivers, become just that, to the exclusion of what they had been before.

What does that mean?

Well, it opens the broader question of how do we think of ourselves, how do we define ourselves, how, in effect, would we answer the question What do you do?  That question is similar to, but more provocative than, Who are you?

The who are you question can  be answered in a number of fact based ways depending upon the circumstance in which it is asked.  The question might simply require providing a name as in arriving for an appointment.  Or perhaps its answer must place you in relationship to some other person, as at a social situation at which people who don’t know each other, but do have some common purpose for being at the event, introduce themselves to each other, Oh I work with so and so.

In contrast to those simple factual questions and answers the What do you do? question demands self-definition.  The answer that seems to spring to mind is to indicate what we do for a living.  We define ourselves by our jobs.  I am a lawyer, I teach, I own a restaurant, I am a housewife, or a house husband, I have a soy bean farm.  Whatever we spend most of our time doing, or perhaps better expressed, whatever we have to do.

To indicate the centrality of this kind of response, an answer such as Oh, I am retired, usually elicits the follow-up, Yes, but what did you used to do when, in fact, you had to do something.

That’s a start to looking at the point with which I began.

Do I now say I am a caregiver?  And similar to a retired person, do I add but I used to be a college professor, or after that was no longer true,  say I was a writer?

A start.  Weariness is stopping the flow.

Sunday night.  I’m looking across at the tilt wheel chair that has made such a difference.  The leg rests and the left arm rest are off, removed to make transfer easier.   I have WSHU streaming some nice music into my ear buds.  Above the music I hear Carol’s open mouthed sleep breathing.  On the floor to the right lies the sleeping dog offering an occasional doggy snore.

Let’s see if I can pick up the thread and transition back to the question of what am I.

Doing the arithmetic 24X7 tells me there are 168 hours in a week.  For all of those hours, minus the nine of relief, or to be precise for 159 of those 168 hours, I am Carol’s caregiver.  That’s a whole lot more than the traditional forty hour work week.

Of course, one could quibble and say, at the least subtract sleep time.  I will give a qualified agreement and reduce 56 hours to account for sleep at eight hours night.

That’s a qualified concession because even when sleeping I am still on duty.

I sleep near Carol’s hospital bed in part because I want still to be near her, to hear her breathing, or the occasional sleep talk she offers.  But I stay close because I want to be sure insofar as I can that I will know if anything medically significant occurs so that I can respond to it.

All of this talk of numbers is natural to me.  Focusing on quantifiable facts is one of the ways I mediate my interaction with the world, which makes more sense to me when numbers are overlaid onto the flow of events and perceptions.

But I am also making a point, however labored.  Nothing I have ever done in my life up to this point demanded such a commitment of my time.

On that basis, if one identifies oneself by what one does, and if factored into that what one does element is the time spent doing it, I am a caregiver.

More than I ever was as a college professor, or a writer.  Of course, as a husband or a father, I was on in those roles every minute of every day.  But just as clearly, I was doing other things at the same time.

Now as a caregiver, I am acutely aware  that I always have one metaphorical eye on Carol whether I am attending to something outside, running off to the store, or as now, as she sleeps, sitting perhaps fifteen feet away writing on my laptop.

To put an exclamation point on the point, I can say that I do not spend much time in my office upstairs where I could work on my newer, more powerful, more comfortably situated desktop computer simply because I would feel I was neglecting my caregiving responsibilities.

I conclude, therefore, that what I am now, more than the writer I still try to be, or the retired professor with continued interest in his fields of expertise I remain, more than anything else, I am a caregiver.

Not a job to which I had aspired, but one thrust upon me, and one I strive to do as well as I can for as long as I am able.

 

 

 

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2 Responses to Being a Caregiver

  1. Kathleen flores says:

    Hope you can stay healthy. Get some rest. Take care Steve. I,d like to think Carol enjoyed the daffodills.

  2. Wendy Warren says:

    The last paragraph truly sums it up. Stay strong.

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