A Most Difficult Decision

Friday afternoon in the community library.  As I pulled into the parking lot I saw several dozen, or perhaps more, children going up and down the large hill at the side of the lot.  Those going down were doing so on their bellies.  No sleds.  I’m guessing they were enjoying recess time from their classes.

Yesterday morning, I received a text message that Carol’s uncle of whom she was very fond had died.  I’ve been thinking about that message in two very different ways.

The first way was the wording of the message, which stated that the uncle was completely healed.  I was, reasonably I think, at first a bit confused.  Healed from what?  Injury? Sickness? The question popped into my mind.  The next sentence answered that question by announcing that the viewing would be at such and such time, with the service the next day.

So I understood.  I will return to the cause of that initial confusion and what that confusion leads to for me.

The second, and more significant response, to that news was a different question, namely, should I tell Carol?   Maybe the answer either way seems obvious, but it was not, and still to a certain extent, is not so clear. I’ve been anticipating facing this situation in terms of Carol’s mother who has been for several years in a skilled nursing facility.  She is, I believe, 94.  About the same age as the uncle, who as far as I know had been living by himself although always with his daughter, Carol’s first cousin, nearby.

The uncle’s death, then, arrives within the context of the preparatory thinking I have already been doing concerning Carol’s mother.  The decision I have made after wrestling with the question since I received that message, and in part based on a couple of more professional recommendations, will likely guide me in deciding what to do when Carol’s mother’s turn arrives.

The first professional recommendation came in a purely coincidental conversation with Hanna, our hospice nurse late Wednesday before the text message concerning Carol’s uncle arrived the next morning at 7am.  I do not recall why I raised the subject with Hanna, but I shared with her my question as to how I should handle Carol’s mother’s death. I do believe my opening concern was securing relief coverage that would enable me to attend the funeral, which would be announced with little precise forewarning.  Hanna assured me that hospice would patch together some kind of coverage.

Having settled that concern, I moved on to the deeper more difficult issue.  Should I at that time tell Carol that her mother had died.  Hanna answered the question by reflecting her own experience that suggested that the only time she had observed a problem with informing a dementia patient of the death of a loved one was when that patient, lacking memory, but still capable of verbal expression, would repeatedly ask after the person who had died, and not remembering that she had been informed that the person had died would have to be told each time that the individual was no longer available.

In Carol’s case her verbal expression is severely limited, and I cannot measure her memory loss with precision.  She may no longer know who I am, but she seems perfectly comfortable with my caring for her.  Not too long ago, but still not recently, she would occasionally call out for her mother, and I would assure her that she was being well cared for where she was in the facility, and that comforted her.

So Hanna’s informed response did not help me much as my unanswerable question concerns whether there’s a place in Carol’s inaccessible long term memory for her mother.

Is her mother still in her mind?

I don’t know.  I suspect not, but I cannot be sure.

If she is, wouldn’t it be the right thing to do to tell her when her mother dies?

Maybe yes, maybe no.

My rational self tells me that no is the better answer.  What point would there be to giving Carol any sorrow at this juncture in her life?

My emotional self, however, feels that I would be doing her an injustice if I didn’t tell her something so vital as the death of her parent.

The balance was shifted to the negative today, albeit perhaps only for now,  by the answer I got to the question from Tonda the very experienced aide.  Tonda simply declared that in her view Carol would not understand what I was talking about should I tell Carol her mother had died.

For all her experience, though, I am not sure Tonda is right because there continue to be instances where although Carol lacks the ability to articulate her words, she does definitely seem to be processing what she hears and responding to it facially or with a laugh, or with the one or two words she can still say. In that latter regard, a week or two ago, she uttered a complete sentence, “You can’t do that,” apparently to some thought in her mind.

In less fraught situations, I deal with this question when Carol, as she is doing now, receives birthday wishes, or a note from some friend or acquaintance, which still occurs, coming from people either unaware of, or the degree of, Carol’s dementia. In those cases, I have no problem passing on the greeting to Carol, and cannot say with certainty as I sit here typing whether the names of these individuals register. It doesn’t seem to matter. These correspondences do not arrive with any emotional baggage.

But the ones concerning her mother, and by her extension her uncle, are certainly in a very different category, one for which my decision, at least as I see it, is consequential.

So without clear guidelines based on discernible evidence, the question remained. My head argued with my emotions, and my head prevailed in that it could see no good outcome to telling Carol her uncle had died. If he still resides in her memory and resurfaces into her conscious mind at some point, I decided, let it not be spoiled by the fact that he is no longer a part of her life.

Whether my decision concerning Carol’s uncle will set the pattern for her mother or not, I cannot at this point know. Likely it will, because Carol shared a deep and aiding bond with this man, not equivalent to the one with her mother, but not very far short of it.

In any event, I have arranged for Wendy, our very accommodating neighbor, to stay with Carol while I attend the viewing. 

Returning to the phrasing of the news from Carol’s cousin, that metaphorical view of life as an illness from which at death one is cured immediately took root in my brain as something worth writing about.  And, no doubt, that root will grow into a column, which is already forming in my head, an exploration of the different ways in which writers over the centuries have presented attitudes toward death. 

But for the present, it is enough to say that writing about this difficult decision has brought it into a focus, has placed it out on the table where I can poke it, turn it over, and make up my mind.

And that is the best I can do.