Writing blog pieces whose subject is an ongoing painful personal life circumstance, like I and many of you readers are in, is sometimes difficult. All the low-hanging fruit of subjects are quickly used up and any writer realizes that an unending stream of emotional pain isn’t interesting, however relieving it might be to write. Personal experiences can be useful for the greater meaning that might be extracted from them, a meaning that readers can carry away with them.
When something happens to me, to my wife, that evokes a great surge of emotion, I try to parse my reactions to understand what all this means to me and then I look for ways to ‘get into’ the subject, how I can put it down in some understandable form. Just as the director of a play will cause actors to assume a place on the stage when saying certain lines, to move in specific ways, even to speak in certain ways – all to maximize the impact and meaning – I try to write in a piece in a structure that is invisible to the reader but makes the words and meanings, what I mean to say, more understandable.
(As an aside, I want to point to an article about Broken-Heart Syndrome https://www.psychologytoday.com/blog/two-takes-depression/201102/broken-heart-syndrome , that feeling of profound sadness that many or most of us suffer. The first tip in dealing with this sadness is to not hold in your pain – and so that explains why I feel the need to write, I am trying to extinguish some of my feelings by writing about them, by using them, by letting each keystroke turn them from pain into meaning.)
This post were incited by a single incident last Friday evening and the follow-on events.
I understand that my wife is dying slowly, less slowly than some, but I have tried to accept each small declivity in the path and just go on from day to day. The following paragraphs may seem excessive background but I need to describe the circumstances.
To reduce daily stress-inducing happenings, I make certain we have all the supplies and food my wife that needs and likes. Since she is eating less, I stuff her with high calorie treats she has come to like. We have a wonderful care giver who, for four hours every day, makes our life as good as it can be, taking care of her – and me. I keep up with physical activities at the local gym early every morning before she awakes and I try to see one of my friends for a late lunch every week.
Even with all that, stark evidence of a new decline just hits me like a blanket of cold, dead air and I struggle to find a new normal, a new acceptable routine. I struggle hardest of all to not think about tomorrow and the tomorrows after that.
My wife has always been a quite modest person and her disease has exacerbated that. She changes and dresses in a very large walk-in closet where I’ve put a stool that she sits on and small handles on the dresser fronts so she can use them for balance. She has always resisted fiercely when I need to clean her up and even more so when the situation is past wet wipes and wash clothes and she must shower. I’ve tried all the accommodating tricks and techniques but, usually only superior strength will get her into the shower and keep her there long enough to get her even reasonably clean.
She is not at all shy about kicking me or battering me with her knees, fists and elbows but I’ve gotten good at fending off most blows at my face and just absorbing the rest. This last Friday was evidence of different person; while struggling she turned her head and bit me quite severely on my forearm, releasing me only when I pushed my palm into her nose. Aside from the copious bleeding, the rest of the shower went fairly typically, I kept her in the gentle spray and washed her off. Only later I rinsed off the blood, doused the bites with peroxide and bandaged my arm when she was drying and dressing herself.
I have always been determined to keep her here at home as long as I could manage her and she was happy. She loves this house, wandering from room to room and looking out the windows at the woods. We spent the first three years of our marriage in San Francisco and then have lived right here every day since 1985. She won’t go outside and hadn’t left the house for about two years. Did this change in her behavior mean a greater level of dementia that would force some changes?
When she had a seizure last December, she fought in the ambulance all the way to the hospital and I spent the entire rest of the day and night trying to keep her from pulling out ivs and keep her in bed. After the seizure when she was first stabilized and in the ambulance, the head emt asked how she should be treated, what level of measures should be taken in event of a severe follow on event? We had an advanced directive but not the more detailed form so he suggested that I go over the orders for life sustaining treatment with our primary care provider.
Her nurse-practitioner was scheduled for a visit on Tuesday and, with the memory of this recent change and what it might signal, we sat down to go over this two page form. Life sustaining treatment – the meaning of that title hit me like a heavy blow to my chest. I have been a minor player in this drama for more than three years; I do the errands, make the meals, change the dirty clothes of the one principal actor. In actuality I could be replaced by anyone, perhaps with less interest in the play, but the real protagonists, my wife and her disease, could, would go on without me.
Maryland Orders for Life Sustaining Treatment.
Yet at this most crucial moment, this minor character has the final word; I get to draw the line in the sand over which the principal cannot step, I decide when my wife dies. Without all the extra frills, I am Laertes in Hamlet who, at a crucial moment, supplies the device which kills Hamlet.
I have been a non-believer for my entire life, going from indifference to agnosticism to atheism and then back to indifference again in the face of actual real life agony. I have two friends, both care givers, who are profoundly religious and I envy them for the bit of peace and calm that their belief in the man in the sky gives them. Although I have asked the occasional question, because I think that their beliefs are not just casually put on, I would never try to test them with questions. That is not my place to try to damage whatever they lean in in times of stress. In this time, in this place where I have a situation I cannot accept and forget, where I have decided on the timing of an unpleasant end has been determined, I envy them a bit.
There is a documentary in Italian about the Mauthausen-Gusen Concentration Camps in Austria built to house and exterminate large classes of prisoners (https://en.wikipedia.org/wiki/Mauthausen-Gusen_concentration_camp#Memorials) When the camp was liberated, soldiers found a large number of writings on the walls of the jail.
There, in German, was written “Wenn es einen Gott gibt muß er mich um Verzeihung bitten”; this statement has been translated and used ever since.
Translated Into English, the meaning is, ’If there is a God, he will have to ask my forgiveness.’