by Ginnie Horst Burkholder

I receive e-mails from those who are in earlier stages of this journey with dementia. They bring to mind the kaleidoscope of my past, and how my experiences have now shifted and changed to reveal patterns of life I never dreamed of. While some unseen hand turns the kaleidoscope, Nelson and I are beginning our forty-second year of marriage and still watching to see how the pieces of our lives will tumble into shapes and patterns of light and dark, hope and joy, grief and dismay.

“I let Marv drive,” my Internet friend writes to me. It gives me pause. There was actually a time when I "let" Nelson drive? I tug at the memories that seem so far away and realize that not only did I “let” him drive, there was a time before that when Nelson did all the driving. We liked it that way. There was no question. My reverie takes me back in time to a point where I am getting into the car for a long or short trip to anywhere, and he is behind the wheel. I sit back for a relaxing ride. I trust his driving implicitly. He has, after all, driven city busses and taxi cabs and navigated the traffic of Chicago. I cannot recall ever feeling unsafe about his driving – that is, until Lewy Body. That cataclysmic shift of the kaleidoscope changed everything and brings me back to the present.

The friend says she is going to have to start putting meds in an organizer. There was a time when Nelson took his own meds without my prompting or help? The memory is foggy, but once upon a time I used to put them into the organizer, set each day’s supply out, and by the end of the day, with maybe an occasional prompt, they would be gone. I pursue that memory farther back through the fog to a time when Nelson never ever took medication for anything. He was never sick. He sneezed if he had a cold but never missed a beat at work or play. He was invulnerable, it seemed to me. And then the kaleidoscope began to hint at something ominous.

The memories of our early life together are fading. You mean there was a time when I didn't have to help Nelson with eating, toileting, and dressing? And a lifetime ago when he could actually help me with anything I asked him to do? You mean there was a time when Saturdays were filled with projects for our friends or me?

Since projects were outsourced long ago, now on many Saturdays we plan outings. On this day, he is clearly in no shape to take the outing we had planned. So I occupy myself at the computer while I wait for him to come to life. He is still in his nightclothes: white long johns turned backwards, a grey long-sleeved pullover top, and socks. When I hear him stirring, I propose a scaled-down version of our outing and ask if he is ready to get dressed to go. He says he is. I turn back to the computer and hear movement that indicates the possibility of purposeful activity. Alas, when I turn to check his progress, I find nothing has changed except that now he is wearing his shoes.

I am amused and fully aware that he is still not very functional, but there is no hurry to be out the door. I continue what I am doing at the computer for fifteen minutes or so, and then, curious to see what will happen, give it another try, prompting, “If you want to go, you will need to get dressed.” Again, I occupy myself for a time, then turn to see if he is ready to go out the door. This time he has added only his hat.

I have not always understood how people could say, “You have to laugh.” Now I stare into that kaleidoscope and laugh at the ridiculous sight of my husband in his backward long johns, shoes, and hat – ready to go out the door and puzzled by my laughter. You have to laugh when you can. You have to let it be funny when you can. The kaleidoscope will shift soon enough to something that defies laughter. This time I laugh. And then I begin tugging and pulling at his clothes.

We went for a drive and had ice cream. I drove. There was no question.

© 2008 Ginnie Horst Burkholder

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