Thursday, 13 February 2014

A Good Kind Of Busy

It's a late post today, reflective of the kind of day I have been having. It's been busy with multiple things going on at the same time. I woke late this morning, tired after a rough day yesterday. The Home Care Case Manager called almost as soon as I had gotten up and we arranged for her to come early; the original plan had been for her to come at 1:00 PM, a time which would have severely impacted Jim's ability to get stuff done today. Then, after she was done with me, Jim had things for me to do; I actually got to help today.

The Case Manager arrived at almost 11:00 AM on the dot; I hadn't even had my morning coffee yet. I am glad she did; that way we could have our conversations while Jim was getting ready for his day. It was a long meeting, filled with all kinds of questions about how I am living, who is helping me, what I am currently capable of doing for myself, what health and physical challenges I am facing, and how I am feeling psychologically. The whole interview is a bit scary, kind of daunting actually.

One of the challenges I face with having Home Care in is that it recognizes another milestone in my life, another intervention based on my ever increasing inability to care for myself. It is the next measurable step down the pathway to dependence and complete limitation. I fight this fiercely yet still I must admit to the reality of my condition. In this situation, maximizing my expressions of independence and minimizing my need for help actually works against me. I am forced to tell it like it is.

The one part of the process that truly concerns me is that the Home Care assessment is done only once a year. This is fine where you have fairly stable or slow moving conditions. With ALS, there is this odd combination of progression where it might be slow at one point and fast at another, but over time there is a consistent march to the end of the line. The train is coming and I am tied to the tracks; it may change pace but it will never change destination.

The Case Manager assured me she has worked with ALS patients and they will do a consistent re-assessment as my condition progresses or if there are major changes. That's another problem; ALS is a disease of incrementalism, nibbling away at my health and well being. Yet this is the system and I must work within it, or pay the price of working without it.

Anyway, once the trial of assessment ended, I jumped into action with Jim and we have being going gangbusters since then. It's been a busy day, a good kind of busy.

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