Thanksgiving day was quiet. I expected to get a dinner delivered from the Methodist Church community feast as that has happened in the past, as well as one from Brad and Amy who have thought of us on these occasions. We did receive both. We had the first on Thanksgiving, and the second on Saturday.
For some reason, this Thanksgiving I remembered one many years ago when Carol suggested we have lasagna.
Which we did.
And shocked my two daughters although I doubt either now remembers. And I cannot recall whether they shared that meal or more likely I just told them about it.
Nor am I sure why we made this culinary choice other than to suggest that perhaps neither of us wanted to deal with a turkey and all the usual side dishes. Also, thumbing our noses at conventional behavior was probably part of the motivation, as we used to have our chocolate mousse before the main course when we ate out at our favorite spot on Montague Street near the Promenade in Brooklyn.
In any event Carol’s appetite was good for both of this year’s very typical dinners.
Her appetite has improved because Hanna, the hospice nurse, ordered atropine eye drops to dry up the phlegm that has been accumulating in Carol’s throat. As counter intuitive as it is to use an eye medicine for this problem, it works. I apply a couple of drops onto Carol’s tongue twice a day, and the phlegm issue is largely eliminated. I have to be careful to make sure that the drying out process doesn’t work too well and begin to interfere with regular urination.
Monday night after a good day. Carol ate well all three meals, laughed from time to time, and slept less than usual. Ryan joined us for a pizza supper, which reminded me how much I miss Papa Nick’s New York pizza. Mentioned that to Carol and she seemed to agree that the loss was incalculable.
The other morning as we were getting ready for the day, Carol said, in the plaintive tones she sometimes uses in articulating this word, “Steve,” uttered with a look on her face that indicated something was bothering her, or perhaps scaring her. As I was standing right next to her bed, I took her hand, and said, “I am right here, Steve is right here,” and gave her hand a little squeeze for emphasis.
“Thank God,” she replied, articulating those two words quite clearly.
I’ve been down this road so many times before, it is both a little tiresome to repeat the obvious question but necessary at the same time.
Did she connect the physical me with the Steve she was summoning? That her response “Thank God” seemed so heartfelt only adds to the significance of the question. It is good, of course, that the Steve in her head, whether connected to the Steve holding her hand or not, is somebody she still feels bound to, someone whom she can call for when troubled.
But here is the recurrent dilemma. Perhaps it is not such a good thing after all because it reinforces the idea that we are still suspended between the then and now heading toward a future at which point the then might disappear, at least for her.
It will always stay with me.
I don’t want to leave it, and I cling to every instance when it reasserts itself, cling to it while acknowledging that doing so is, in the long range view, futile.
A start. Much more to explore with no hope of finding a comfortable resting place.
Sunday night. A cold wind blowing outside. Carol asleep under the new blanket I ordered online for her on the advice of Hanna who thought the afghan I was using was not warm enough because of its loose weave. Carol and I have always had very different thermostats.
Have not been writing in my journal that much this past week, not because of any problems, but rather the absence of difficulties providing me with time that I have decided to devote to my writing career. I am aggressively marketing two unsold novels, and writing my columns as ideas occur to me. And now, once again it is late, and so I will just try to pick up where I left off, hoping to spend a good writing session on it.
The “it” was provoked by Carol’s response to my insistence that Steve was standing right next to her bed holding her hand to which she replied, quite clearly, “Thank God,” raising the continuing dilemma of how to deal with such emotionally fraught moments.
Of course, one part of me is delighted for a couple of reason. First, the answer in its clarity illustrates a good level of cognitive functioning. As new as I am to dementia, I have no measuring stick in terms of movement up and down along a scale of cognition other than the everyday observation that there will be good days and not so good days.
In that regard, recently I have not seen much fluctuation. It is true enough that Carol does not often articulate clearly enough for words to be apparent, but occasionally she does. And perhaps more to the point, she seems these day more responsive to direct questions that require a yes/no response, such as “Are you hungry,” which sometimes elicits a strongly positive response. In addition, she is laughing more at particular things I say, sometimes comments directed at the dog over whom I occasionally trip, or just old dog that she is, decides to plop down right in the path of the wheelchair. And, finally, in this brief survey of her cognition, I am fairly well convinced that she listens intently to the music I have playing throughout the day. I have asked her from time to time whether she is listening, or whether she is enjoying, the music and she usually responds in the affirmative. I have also seen her moving a foot in time with the rhythm she hears.
So from that perspective, her ‘Thank God” response fits that pattern.
But it also raises that other bothersome issue, namely, whether or not she connects my name with my body. There is no way to get a good read on that. I push sometimes, but do not get a definitive answer to that question.
Which in some ways is quite important..
Because it underscores the tension in my situation between knowing I have to let go of my sense of Carol as she was and my not wanting so to do.
What occurs to me as a way to explore this tension is to focus on my moving between our upstairs bedroom and the couch on which I now sleep.
That will be for next time.
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