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Ch.40. Pat Asks Ron How He has been Affected by Her Lewy Body.


Ch.40. Pat Asks Ron How He has been Affected by Her Lewy Body.

            After we discussed our last entry, Pat asked me for more details on how I have been affected by her having Lewy Body Disorder. There have been a multitude of changes, of course, some good and some bad. I think I’ll focus here upon my emotional and mental state rather than physical things like taking over household chores.

Anxiety.  My anxiety has certainly increased since Pat’s disease developed. I often feel a low grade but continuous sense of dread. What bad thing is going to happen next? Will Pat wake up this morning hallucinating? Will she feel scared and lonely, needing me to hold her and comfort her? Will Pat get angry with me about something she has misunderstood or about something that never happened? Will she get worse anytime soon, and if so how?

            I practice slow breathing, cognitive restructuring, going to support groups, etc. They help... a little.

Worrying. I’m not a pessimist by nature, but I do spend a lot of time thinking about worst case scenarios. What if Pat’s meds quit working? What if we go shopping and she gets lost? What if something happens to me so I can’t keep caregiving? It didn’t help that I needed a heart stent a few months ago. That reality has elevated my insecurity. It also doesn’t help that many of the problems presented by Lewy Body don’t have clear answers. When I worry, Lewy Body feels to me to be like a jig saw puzzle has been turned upside down with some of pieces missing.

            Pat is not much of a worrier. She sees adventure where I see danger. She anticipates best case scenarios, just my opposite. Climbing on rocks is safe, she’ll say. When I insist it is dangerous and she could fall and hurt herself (which she has), she just says that she will be careful but if she falls, she falls, and she’ll just pick herself up and keep going. I wish I could relax and let her climb and fall if need be, but I don’t. That’s when I begin to panic and worry “louder,” raising my voice and trying to make her get off the rocks. I really piss her off when I do that. I worry about that too.

            I guess you could say that worrying is the mental part of my overall anxiety. I worry more now than before Lewy Body entered our lives.

 

Pat’s comments on Pat Asks Ron How He has been Affected by Her Lewy Body.

            I sense that Ron is a lot more miserable now then he used to be. I do. But I am not any more crazy now than I ever have been. I’m not a crazy person. When I was young and I knew that the barn was dangerous because Aunt Ella and Uncle Roy told me it was, Uncle Roy started me out by laying me down in a little crack in the floor that had about half an inch of grain in it and he said I should never lie down in more than that because it was dangerous for my breathing. But both Ella and Roy after I reached a certain age trusted that I knew what they taught me and I would not do the things they considered that might be dangerous to me. I was very careful to follow that. I did not go where they told me not to go although I did go to some places they had not forbidden me to go. I was careful, however, that those were not dangerous places. The most dangerous thing I did when I was a child was to try to build an igloo of snow. When it crashed down on me my dog Buffy had to run and call Auntie Anna to come and dig me out of the snow. I never did that again nor did I even think about it. On the whole I make pretty good decisions about what is safe for me to do and what is not safe.