Apr 20, 2012

Just Another Dirt Pile

Today has been an interesting day. I often wonder though, where does the day go? My days with Sam seem to be getting shorter and shorter yet I know we are spending the same amount of time together. Maybe because I do spend so much time with her I tend to not notice as much the gentle changes, the slight differences in our routines or of her decline. It is taking longer to do normal things that most of us take for granted; like getting dressed, combing our hair or brushing our teeth. I had not been with Sam since Tuesday, and I had noticed some differences in her body language as well as her cognitive functions but not as bad as today. The leaning left is more drastic, her head is rolling allot and conversations at times are repeated several times during the day. So often I can not understand her completely. Three days ago or even last week feels like last night to her. Sam says she feels like she has been beaten with a baseball bat then given eight quaaludes. To be honest, that reference is sort of what I see looking into her world too. I know she can not put into words exactly how she feels, no matter how hard she tries because there is no way that we can relate or understand as we have never been there ourselves.

So I worry. I know Sam and I have an agreement not to worry and agree that it is nothing but a thing and something that will only get worse. I know we are over the shock of it all, but do we truly ever get over debating the end? Sam and I spoke very candidly about the transformations today, like it was a normal every day talk that everyone has. I found it sort of odd and disconcerting that we have got to the point that we sort of laugh about it all. Does laughter become our defense to keep from sharing tears with each other anymore? Have we come to a stage that one feels that we have to protect the other? I have very mixed emotions about this at the time being. I think I am feeling very discombobulated and alone today with all these odd feelings.

I know Sam will probably read this as will Jasmine and I should not be saying these things for their sake. Maybe, in the make of it all, as I have always been the coordinator and sort of the unspoken alpha of this pack, I have finally reached a brief moment that I feel I am loosing the battle with myself as to feeling helpless. I have educated myself so well with this disease and tried to be the rock that this family needs and I feel like erosion from the elements have hit today. In the effects of the disease that I have seen in Sam the last week, no amount of education has prepared me for, I finally no longer have an answer for these happenings. In the past it seems like we have been able to make it somewhat better and adjust accordingly. Today though, I feel so helpless and feel that I am letting her down.

I think often times, the caregivers forget about themselves. I have been advised to be careful, to not let myself get too worn down or not to stop living my life in the process but I must have done so without realizing it. I would not change it for the world though because Sam is such a large part of my life and my world as well as Jasmine. They are just an extension of my family. I don't seem to be able to remember a time when I didn't have them in my life. Quite possibly that is the issue. As the outside caregivers so often do, we forget about us, we are so worried about making sure the patient and the family make it through their initial anger, fears and grief that we never take the time ourselves to go through those processes. This last week or so I have been angry at myself and others. I am the type of person that loves other people but I can't seem to tolerate their ignorance and lack of respect for people that obviously have a disease. I just want to go to a mountain top so high and tell the world to hush a minute and listen....to tell them "Listen all those out there, your lives may seem bad but did you know there is this disease, a disease so rare that they have no known cause so they can not find a cure yet. Did you all know there is no other disease that is so painful and debilitating and so long in it's process of death? Have you all no feelings? Have you all no compassion or mercy?" Why can't we get the word out there so easily as this? I am so angry right now at how unfair it just all seems to be. Maybe, just maybe the time has come that it is my turn to grieve.

Just another dirt pile, maybe. A house of crazy we do build, but pretty soon I think we will have to work on the mansion itself.

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