No Surrender

After midnight Sunday night.  I have been busy the past few days working on my new writing opportunity as a columnist for the local newspaper.  It is important for me so to do to maintain the semblance of balance in my life.  The result, though, is I haven’t had as much time or energy for this project, and it is too late to do much tonight. 

I ‘ll  scratch out  a few words  in the hope I can pick up some momentum tomorrow.

As usual I watched PBS tonight, first Poldark and then a documentary on Itzhak Perlman  Nothing unusual in that fact.  What was different was that Carol, in her chair, was in the tv room with me.  Not in her bed.  Or drowsing in her chair in the living room.  But in her chair a few feet away from me, positioned in front of the recliner in which she would sit when we watched television together.

I did not come to the decision to wheel her into this room this evening lightly.  I don’t want to over analyze this, but it is worth a little exploration.   I was happy to have her in the room with me even though, for the most part, she was asleep.  I say for the most part because at least once she laughed at something humorous in the Perlman piece.  So maybe she was drifting in and out of sleep and processing, as she does, what she hears rather than what she sees. At any rate, I don’t now recall what she found funny, but I am sure that her laugh was in response to the audio from the show, and not from a voice in her head.

I guess having her in the room with me, in front of her own chair, can be seen as an effort on my part to hold onto a piece of our pre-disease lives.  I don’t see anything wrong with that when there really is no better alternative in our situation.  When, as I usually do, I watch television alone while she dozes in her chair in the living room until it is time to transfer to her bed, that separation is a concession to her disease that might ultimately prevail.

But not just yet.  Her presence in the tv room in front of her chair, occasionally responding to some bit of audio is a useful fiction that I intend to continue as a retention of the past because that past unexpectedly recurs from time to time.

Such as this morning when I was in the kitchen beginning to prepare breakfast when from her bed I heard her call, quite distinctly, my name.  I called “What?” to her.

I didn’t expect her to respond, and she didn’t.

But that brief interaction had the feel of our old time normalcy.

“I’m fixing breakfast,” I continued.

As I would have done in the past.  Perhaps she heard and processed what I said.  I can never be sure.  Often when I leave her for a little while such as to run down to the store or the post office, or even across the road to get the mail, I tell her what I am doing, ask if it is ok, and when I return I tease her by asking if she has missed me.

And fairly often she says yes.

So I continue to hold up my end of the conversational possibilities and am rewarded when she picks up her end.  It is well worth doing, not only for her occasional response but for my own head, a way to combat the strong sense that I am living alone.

Wednesday night.  A few snow showers mixed in with rain announce the approach of winter.  A little snow remained on the ground for some hours.  My snowblower is repaired and ready.  Am I?

At my weekly lunch last Thursday, on an impulse, perhaps suggested by Carol’s recent, robust appetite for lunch wherein she happily ate a grilled cheese sandwich, in addition to ordering my usual wrap, I requested a half wrap for Carol.  I always used to get two wraps for us when I was picking up lunch for us.  I did this so regularly that I just had to identify myself when I called and say I was coming by to pick up our usual sandwiches and they would be waiting for me.  As Carol’s disease progressed, a whole wrap began to be more than she wanted, and so I would get her a half.  But the ingredients for each remained the same, turkey in mine, ham in her, lettuce and tomato in both, mayo in mine, thousand island dressing in hers.

Then, even that seemed more than she wanted, and I stopped getting her one.

Until this past Thursday when I ordered one for her, asking Ardy, who runs the place, whether I was right in remembering that when Carol was still eating her wraps she had given up on black olives.

“Yes,” Ardy answered.  “That’s right.”

So I took her half  wrap home, and put it in the refrigerator for another time because the aide had already given Carol lunch.

I look for reasons to avoid cooking full meals seven days a week, so on Friday, reviving an old pattern, I heat up chicken noodle soup from a can, add toast for Carol and a PBJ sandwich for me.  I had intended this time to substitute the wrap for her toast but I forgot.

Until Saturday when I remembered the wrap in the refrigerator and offered it to Carol for lunch.

She devoured it with enthusiasm.

So our new/old normal for now and for as long as it lasts, will include a weekly half wrap for Carol.

It is a little thing, it seems, but a little thing of some importance.  In so many ways, large and small, our lives teeter between what was and what will be, and the best we can do is try to find stasis between those two conditions.  And in that stasis whatever presents itself as a continuation of the old into our new present is welcome whereas any adjustment that denies the possibility of what used to be continuing is most unwelcome.

Perhaps all of that sounds like too much weight to put on a half wrap containing ham, lettuce, tomato, thousand island dressing sans black olives.

But I don’t think so.

And I might even push a little further.  I used to add one of the wonderful, freshly backed cookies to go along with Carol’s wrap.  I still always get one with mine.

So, this next time, I’ll go for it, and get one for her.

This stubborn retention of bits of our past is an act of resistance to push back against the power of dementia to eradicate that past.

The alternative is surrender and I don’t see us doing that any time soon.