levels of care
I guess it is hard for us, wherever we are on the globe, to put ourselves in someone else's shoes. We do that here on this site with somewhat mixed results. I post or blog something then someone else adds a reply. I think:"Where the hell did they get that connection from what I wrote?" I think it is the filters we all see through. I look at your life through the filtered experiences of my own life. So when you say "pie" I think " blackberry" and you might be thinking "apple". It makes communications a very zig-zag path some times and takes a lot of patience. To work out what thoughts are behind what someone else is saying is what shows the depths of our wisdom and the breadth of our concern.
Ray and I are going through a rough patch at the moment. I say that tongue-in-cheek as it is really only me. Ray is fine, he has clean clothes, good meals, his seat out on the verandah and all is well in his world. If friends come along and the wife serves cake, that is an extra special day. And a good long afternoon nap and a nice dinner featuring some of his favorite foods makes it another good day for Ray.
My world if very different from that. My present levels of frustration are mostly down to his rising levels of care. He is falling more, having more "accidents",experiencing the clonus more at night so my sleep is disturbed more. He is failing in perception now so conversations are more like the "apple or blackberry" concept I started with. He has never been a great communicator so I don't know what goes through his mind. I know now he hates the rush of going to doctor's appointments, the courses we take, all the routines of life annoy him. He tires more easily, pays less attention to what he is told, remembers less. His personal hygiene is starting to reflect this and he is beginning to look that bleary eyed, and bristle chinned specimen of an older, sicker man that we are used to seeing in the doctor's surgery, and he is only 63.
But on occassions such as the wedding this afternoon I will wash his hair, supervise the shave and make sure he presents the best possible face to the world. And therein lies the paradox. Because all those who see us and know us will say how well he looks, how good he is doing, how easy it must be for me to look after him now. It is the contrast between the brightness of the special occassion and the dullness of everyday life. I put on as good a front for the world as I can manage. The sentiments here are not what I express to "friends" in the real world. To them I say Ray is doing fine. Because of that I feel unsupported when they turn away, satisfied that I am coping in what seems to them just an awkward situation.
The levels of care we all give or need are so different here. There are the "happy ever after" stories of people who have 95% recovered, there are the "sadly slipping into a decline" stories of those whose strokes and other infirmities are slowly taking them to an early grave. I try to look at life on a sliding scale. I try not to envy those whose lot seems easier than mine knowing that many disabilities are hidden as Ray's will be at the wedding this afternoon. I wish I could be honest and open with my friends and still keep them but I know they don't want to know the grittiness of our everyday existence. I try not to exaggerate Ray's disabilities in order to get sympathy or to give myself a martyr's crown. I get by, just facing up to each new problem as well as I can. Life is good between the fractured surface there is some peace and contentment and today a quiet enjoyment of the changing seasons.
I wish I was as philosophical as Jean, as patient as Joy, as forbearing as Sarah. I try to do my best here giving words of encouragement to others and a word or two of my own experience to show I do see what they are gong through. I am not Miss Perfect, or Susie Sunshine. As changes occur in my life I cope with them as best I can. At the moment I am trying to go through the mud to reach the hill where I can again see the stars.
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