Imaginary Friends

Well, so far this caregiver business has been a fairly easy ride.  He is reasonably self sufficient, and my physical duties mainly revolve around reminding him to take his pills in the evening and keeping up with his appointment schedule, and applying bandaids to small cuts that gush unspeakable amounts of blood.  Other than that, he doesn't really need much from me.  Which, in some small perverted way, leaves me feeling a bit side-lined.

He is taking this year off work in order to fully channel his energies towards healing and also to reduce one of the major sources of frustration in his daily life.  He has fallen into a gentle rhythm that, although not especially stimulating, should be sustainable enough to endure the next 42 weeks.  Boredom is the greatest threat to the swift passage of time, yet activity is the greatest source of stress that makes time unbearable. His daily routine: breakfast and a handfull of pills, a couple of hours of projects on the computer, several hours at the gym rewarded with a smoothie, a few hours of reading, followed by saxophone practice, dinner and another handful of pills then television until sleep steps in to consume the remainder of the diurn.

The daily cycle yields to the weely cycle each Wednesday, when all but the simplest activities are replaced by moaning in a rumpled grey heap, waiting for the pain to pass.  Here too, there is nothing for me to do.

And this is going to sound like a strange gripe...but I expected to be busier, to be more occupied by the actual giving of care - as opposed to being preoccupied with thinking about his care, at which I excel.  I had planned to be "proactive", but in truth, there just isn't that much action to take.  Sure, there are all the little chores that keep life humming along: cooking, cleaning, shopping, working, bathing, but in terms of helping in this fight - I am relatively useless.  I too am just passing time.

Don't get me wrong, I am not complaining that he does not require more care.  I am grateful that he is strong, self sufficient, and as healthy as he can be under the circumstances.  With this disease, needing more care is contrindicative of a good prognosis.  It is just that...well, how can I say it without sounding selfish and petty?  I know that what I do matters and that I make a difference...I suppose, what I am realizing here, is just how little real control and influence I have over this outcome.  This is the point where religiously inclined people have the luxury of placing it all in God's hands - Big Daddy will take care of everything.  And, if it doesn't work out, you can still lay all the blame on 'His will' without having to second guess if you should have, could have done something more.

Must be nice