Sunday, July 31, 2011

I prefer the zoo

A neuro-psychologist once told me I had the tendency to "calamatize".  I wasn't quite sure what to do with that insight as I found our condition to be a considerable calamity.  But upon further reflection, I used the insight to understand myself better.  I tend to want to know the worst thing thing first, so I know how bad it will get and what I will ultimately have to face.  Then I can back in to the present, and make the most of it all.

Currently the most difficulty we are facing isn't the gradual loss of abilities, or the encroaching waste management issues.  The most difficult for me personally are the extreme changes that occur from day to day, and in fact, moment to moment.  It is a roller coaster ride of emotions that a control freaky girl like me finds terrifying and unsettling.  I keep getting lulled into a false sense of normalcy.  We can eat out together and enjoy the experience.  True, I now have to keep giving him the utensils, as he eats soup with a fork and cuts his bread with a knife and fork.  The seductive sense of normalcy however is brutal, as we are quickly whipped back into the rabbit hole of every day life as we now experience it.

Another  tough one is the ever constant questioning, of all things, all the time, all day long, every day.  The same questions and new ones, over and over and over and over.  I search for kindness and try to avoid the obvious answer of, "I don't have any more energy or time to answer and you won't remember it anyway."  I struggle constantly with the personal assault of  feeling not being trusted.  I know better, but when almost anyone else's opinion is required to validate whatever I have told him, it is tough not to feel not trusted.  He will ask a random truck driver a question about the garbage pickup (doesn't have to be a garbage truck or a garbage man) to check out the veracity of what I have told him.

I thoroughly understand the refrain, "you have to take care of yourself", but I remain ignorant of how to actually do that.  I am doing the best I can to get to yoga,for example,  but struggle all the time with the resentment that this new responsibility is really entirely mine.  I try to read and to learn and have begun to notice that most discussions of "taking care of yourself" end up in "taking better care of him."  In other words, if you monitor food, water, waste, exercise, maintain careful and accurate records, etc etc of the patient, you somehow have lessened your "load".  Sure sounds like you've made a giant new do-it list to me.

Wednesday, July 20, 2011

We wander in a wilderness of words.....

He was anxious, not agitated, but sincerely wanting to communicate something with me.  He had talked to his daughter and I suspect she had given him some kind of assignment related to talking to me.  So he came into the kitchen and sat at the island and began.  It was an earnest pitch to talk, to converse.  I asked him if I could write it down (I type really fast) and he said no, that people would laugh at him.  I reassured him that no one would find it funny and that it might actually help all of us to figure out his speech patterns in order to better understand what he was trying to say.  The following is an actual transcript.  Where you see parentheses, I couldn't understand the word at all, even to write it phonetically.  Note that the perseveration is pretty constant.  In person when the topic and/or theme of his speech changes abruptly, he continues socially as if that is ordinary, if not normal:

"There's another blue like we have like our other boxes to bring in and out with other junks.  I don't know whose it is.  We got ours in front of the , what was that?  But there's also a lot of them up still at that age.  They shouldn't be.  I am going outside.  Are you interested in coming and seeing?  I can't get off the various sticks and things.  I am not doing a very good job.
If you did you could get another....well, actually this is a very pretty little chair, er room, but we don't have woods furniture or like that.  You can get nice....well, there is no real matter to it unless someone does, so you just leave that one alone unless you're interested in it. See we were talking, actually Erin had heard that speech before oh heaven,, heaven knows just popped in there, can't make things bigger or smaller actually than whoever wrote it and because they can't transmit it very well anyway, but nothing...little worried, always worried I guess that's true, as far as feeling sick I have always felt, it's not real good that's not very good for the first or second.
Sometimes you get an answer you don't want yourself.  It's perfectly all right unless it's something that's very very tight.
This is like something you put up and put up and have to tell your spouse that you don't let that go by if it's causing that much kind of (.......) and it's not supposed to be anybody, unless there's reasonable uh uh things that would remove no no you can't do that and I don't know what that is, don't ask me what that is. It's hard enough to keep, I think, to keep it healthy, to keep it warm, then if you can do that for pete's sake, do it.  You can tear the rug up and get ready and fight and that has nothing to do with us."

He followed up this effort with some statements about how long he had lived in this house and I got the strange impression he was considering leaving.  I asked him about that and he replied, "Well, I obviously can't stay here forever."  We talked further and clarified that he actually meant stay in this house, not on this earth.
He was missing his primary family so I helped him call his sister. She wasn't home but returned his call later.  When she called, he carried the phone over to me and whispered (stage whisper--pretty loud), "Shall I tell her about you?  Does she know you?"  When I explained that I had known her for 47 years, as long as I had known him, he just thought it was all very strange.

There are some strange Godly moments too.  Recently, I had a very bad day.  Just filled over the top with resentments and anger and frustrations.  I wasn't talking and he felt that I was angry with him.  To be sure I was cold, unresponsive, and short.  My self pity meter was at an all time high when we pulled into the garage with our groceries.  I had just gone through another round of our usual grocery store routine:  the checkout person puts the groceries in bags, Stew empties the bags and puts the groceries (bagless) in the cart, Ann puts the groceries back into bags.  I stepped out of the door of my car, not sure whether to cry or to scream, and up walks --literally--my beloved neighbors, accompanied by the arrival of a good friend into our drive.  They surrounded me literally with love and light.  In my mind's eye, I glanced heavenward and exclaimed, "Well, that was a little heavy handed--not very subtle--but I really needed it, thanks!"