In my post on Tuesday night I asked, essentially, why I bother with it all. Why do all this work; why provide all this care? What's the point? These questions were prompted by an outburst I might characterize as the mother of all crankiness. It was caused by a not-so-delightful combination of Cranky Reasons #9 (this freakin' disease), #6 (this shouldn't be happening) and #5 (I get scared) plus an unnumbered reason: enough already. The situation was that Skip's hands were so weak she was finding it too hard to eat her dinner salad and asked if I'd feed her.
This request prompted a cascading series of images in my mind as I imagined helping her eat becoming a part of the daily mix of caregiving tasks. If you're a caregiver, you can become accustomed to a certain level of care that you're providing, but adding new items can be a scary prospect. I reacted very badly to this new possibility.
Right now, we have a pretty good routine in terms of serving dinner to Skip and the level of support she needs that allows me to eat and enjoy my meal at the same time. If I have to feed her, then the entire routine will change and I won't be able to eat at the same time and someone's dinner will be eaten cold (most likely mine).
But, most importantly, if I'm feeding Skip, then this is one less chunk of time I can call my own that is instead given over to caregiving. This is what I most regret about the need to take on any new tasks ... I lose that much more time in my day where I determine how that time is spent.