by Ginnie Horst Burkholder
Sometimes when my sensibilities are pushed to the limit I will assault the page so that I don’t direct my exasperation or fury at Nelson. This is one of those times.
He has been more physically active lately – on the prowl instead of just sleeping in his chair. He’s pulling things from the closets, taking books from the shelves, and looking for something he can’t name. Messy trash gets thrown in the recycle bin. Lights and water get left on. My clothes get moved around. My favorite paring knife disappears. A half shelf of flowerpots and vases lay broken on the garage floor. And my sense of order is repeatedly overthrown. I go behind him to search and restore until the proverbial straw breaks me. Yesterday it happened not once but twice.
I should be ecstatic
Now, this morning he saved half of the last banana for me. He thought of me and planned ahead? It is almost more than I can believe. It was going to be my breakfast since he hasn’t seemed interested in bananas lately. I know that counting on anything is risky, but it’s hard not to fall into the expectation trap once in a while. I tell him, “Thank you for saving me some banana.” Then I wonder why my heart doesn’t feel the gratitude. I should be ecstatic shouldn’t I? But it just isn’t there.
His recent pattern is to go into a dead sleep when he gets home from adult day care, and then become active at bedtime. One night I tried walking him around early in the evening to keep him awake, but it was like leading a statue. I tried putting his hands on my shoulders, with him walking behind. Soon I was carrying dead weight. I told him he was too heavy. He eased up on the pressure, but I knew it couldn’t last. So now I let him sleep for a couple of hours and then feed him about 7 p.m. His eyes stay closed, and often I have to hold his head up to get the food in and avoid having it slide off the spoon. He manages to eat in some gray state between awake and asleep.
Getting information could send us both over the edge
The sporadic second wind is the problem. Yesterday about 9:30 p.m., when I was ready to head for bed, he started rummaging in the kitchen for something to eat. He wanted food, and then he wanted to find something. I couldn’t discern what. I only wanted to go to bed.
Finally, he got the word “rope” out and started down the basement steps. Our bedrooms are upstairs. The basement was not the direction I wanted to go, and I didn’t know what kind of rope we were looking for or why. The process of trying to get that information could send us both over the edge. I waited, hoping he would come back up and let me lead him to bed. Instead he wanted me to help him find the rope, and he let me know this by giving a sharp whistle. I yelled back, “I’m not a dog, and I’m not coming down there. It’s bedtime.” I went crashing over the edge. I slammed the door and a few other things and let words fly, and then stomped upstairs to bed. When he came up, I asked if the lights were all turned off. He said they were. I went down the first flight of stairs and peered down the second. The lights were not off. I went down the second flight of stairs, turned them off, and then climbed back up the two flights to bed.
When optimism crosses into denial
In one of his more cognizant moments, he wondered aloud how people at church might feel about our "popping in" whenever we "feel like it." Here I am doggie paddling like mad to keep myself healthy – dealing with two ridiculously isolating his and her diseases – and all he can worry about is what people think? I felt pushed to the edge again with feelings, judgments, and consternation. He lives in a fantasy world with no Lewy body or chemical sensitivities. Can he truly not remember? I think about our friend Chip who recently passed away from Lewy body. He talked about his disease, and acknowledged its effects. Nelson’s optimistic nature crosses the line at times into denial. If you don’t acknowledge it, it isn’t there. That’s an extravagance I can’t accept.
When he was finally in bed tonight, we observed our ritual. I asked if he was all set. He said he was. Then we kissed goodnight and he said, “Goodnight, darling.” In the quiet softness of the nightlight, only I am left with all of the memories of my disintegration and dissatisfaction.
I think about the bird that got tangled in my garden net. How, after twenty minutes of cutting it away thread by thread, the bird sat gently enclosed in my hands. Then, as I opened my fingers slowly, the bird burst into freedom. I want to snip away the indignant threads that wrap around my insides so that I too can be free. And so I write, until one by one I’ve acknowledged the defeat, disappointment, and discouragement, and given them over to the healing power of grief and grace. I want to live the exhilaration of the bird flying after another go at freedom.
© 2009 Ginnie Horst Burkholder
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