The Caregiver is Forced to Consider the Future

Satchel Paige, the famous pitcher, said, ‘Don’t look back, something might be gaining on you.’
As a caregiver I try to only think about today, never to think past my bed time. With few exceptions, I can’t control tomorrow so why would I want to think or know about it?
Twice today, I stumbled, had an inadvertent glimpse into the future and paid dearly.
Our house had been a terrible mess as I used these last few weeks attempting to create some order, throwing away paper, giving away stuff we haven’t used, in short trying to make it orderly rather than a well concealed mess.  Often I pay a young man to do some work that is past the constraints of my bad back and he was here moving stuff around, putting piles into the garage and so on.
Around noon, the hospice nurse came to have a look at Jackie, specifically to see if her skin was breaking down and, after the examination, the nurse  was writing in the patient home chart.
I knew Jackie had been slowly, very slowly declining, reacting and smiling less, and I try to ignore that but, like a sore tooth attracts attention from the tongue, I couldn’t help asking the nurse what she thought.
She said that Jackie’s skin was showing reddening in several places and there was one small frank sore that was being treated. In her experience, she went on, ‘the occurrence of these kinds of breakdowns is possibly a sign that her entire system was flagging. The end could be weeks away rather than months.’
I had to go in my office to recover my composure, to keep from breaking down in tears right there and our regular caregiver, a woman experienced in care of end stage dementia patients, came in to comfort me and told me that she’s seen lots of people worse off than Jackie stay alive for months.
So I forced myself to push out the bad thoughts and concentrate on today.
I did some more organizing and when my helper was finished went to look. He had made magic, making the cellar storage spaces neat and orderly, piling stuff for donation and the cellar looked almost terrific.
In 35 years of marriage, 20 of those living with just each other, I was used to sharing even little triumphs with Jackie; we were each the sounding board for the other’s small triumphs and sadnesses.
So, unthinking in a reflex formed in years of living together, I went to call out to her to come and see how great the basement now looked when suddenly I remembered.
She was in bed, she didn’t understand and from now on, she would never ever understand or care or share with me.
A vague smile or a small touch, perhaps inadvertent, is all there is now and tomorrow I will wish that still was there.
I didn’t have to look back to see something gaining on me,
I just glanced up and saw it coming.

3 thoughts on “The Caregiver is Forced to Consider the Future”

  1. Lew, it’s getting real. I’ve been following your posts for some time now, and always appreciate that you are writing about this journey that hits so hard, so brutally, so painfully. The losses are real and they’re hard. Thank you for sharing as it happens.

    1. Michael, This journey is different for everyone – and that’s the unfortunate part.
      There’s nothing to do but stick with it, make it as easy on yourself as you can while doing the best you can for your wife.
      What’s coming out the other end for me is pride in myself for being a good partner, greater love for my wife, appreciation for the help we get and gratitude for having the great time we had.
      It will be the same for you.


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