XLV. Riding the El to the End of the Line

I lay upstairs in bed last night listening to the sounds of the house – the clapboard walls, the floorboards, the furniture creaking as they cooled; in the cellar, the oil heater flow control valve clanking as it got stuck and unstuck when the heater turned on. (I made an appointment with a plumber to repair the valve months ago, but he never showed up.) I listen for the sounds of Emma. She is quiet, sleeping peacefully.

Emma experienced another agitation bout over the weekend; I should say we both experienced it. I did not call Hospice: I hesitated because our regular team was off for the weekend, and I did not want to experience another verbal battering as I had the day after Christmas and over New Year’s with the patient care administrator and the on-call nurses. This callous handling of Emma’s and my situation apparently has left me traumatized, because I have not recovered; I feel unsettled still. This weekend I determined it less stressful to me to manage Emma’s agitation myself even if it meant my being up all night and unless she got out of hand than to submit to a potential psyche pitting spew from an on-call staff. During the night and early in the morning, Emma threw off her covers and skewed herself around in bed so that she got her head between the rails on one side of her hospital bed and her legs through the rails on the other side. I dislodged her, straightened her body, pulled up the covers and gave her the Atavan to calm her; after the third dose (one every four hours), she quieted.

In the wake of such events, Emma sleeps for two days. As noted to be normal in our Hospice booklet about the end of life, she sleeps with her mouth open; she appears startlingly like the figure in Edvard Munch’s expressionist painting, “The Scream,” the silent scream. After a while she will close her mouth and sink into an apparent deep sleep. She refuses food and drink during this period. Last evening, Monday, with encouragement, she accepted the delicious potato soup our aide’s mom made. Our aide waved a spoonful under Emma’s nose until Emma opened her mouth. Emma’s blood pressure has been slowly rising over the past month, so when Tess, our nurse, came Monday afternoon, she contacted the doctor and he increased her blood pressure medication to its previous level a few weeks before Thanksgiving.

It is difficult to watch a loved one’s life slowly slipping away, as you may know. We can only hope that they remain comfortable and suffer little; it is hard to know what goes on in the mind of a dementia patient – other than “movie trailers” of seeking lost loves, of being lost and trying to find the subway and the way home. After shopping in town in Philadelphia, we’d board the subway train, ride west under Market Street until the train emerged from the tunnel near Drexel University, up into the light and the elevated rails – where we could look back over the intertwining and separating tracks at the Pennsylvania Railroad 30th Street Station – and then  terminating another few miles west where the Philadelphia city line meets the suburbs, 69th Street Terminal. Maybe it is true, then, that as the last breath leaves our body, we do pass through a tunnel up into the light.

To repeat what I said in an earlier chapter here, my father said to me near the end of his life, “I wonder what it’s like when we die?” “Let me know,” I told him. I don’t believe he has; but, rather, Mother is telling me.

–Samantha Mozart, Tuesday, January 10, 2012