Today is Wednesday, September 8, Day Five of Hospice. At least I think it is.  I have already lost track of days and dates.  I am in a state of complete exhaustion.

Yesterday, after a really challenging night with mother, I came back to Krum in the middle of the afternoon.  How I even made the 50 mile drive is beyond me.  I got home, spoke at length with a friend of mine whereupon I simply starting weeping and just couldn't stop, washed my hair, soaked in bubble bath (clearly into water therapy), slept a restless 12 hours and am still barely functional.  Somehow, today I must get to work, and in the next two days, get a week's work of things done.

One of the issues that faces us, like it or not, is the fact that the human body while alive, and no matter how immobilized, must be able to eliminate wastes.  We're able to deal with the liquid part easily--a catheter deals with this efficiently and neatly.  It is the solid wastes that are the issue.

I won't go into the details here, but let me just say that much of Monday evening and well into the night was devoted to this challenge.  Thank goodness for the most excellent night nurse and her caring and competent hands, or I don't know what would have happened.  After that night, I made an executive decision that we needed to hire her to come in most nights for the duration of this time, expense be damned.  She's not a hospice employee--she works for an independent agency, so we were able to make arrangements for her to continue as much as possible.  

I'm having many mixed feelings about this hospice situation. In my previous post, I had mentioned the hospice nursing supervisor who visited on Monday.  I experienced her as young, arrogant, and snippy.  A huge contrast to the intake nurse who had been there Sunday afternoon and who actually took the time to get to know my mother through my eyes and her writings.  She understood the hugeness of the loss here and the challenge facing us.  Yesterday's woman, who had the power to withdraw the extra help, did not understand it and very much exercised her power.  And so, we now get 45 minutes three times a week of someone who will come in and bathe mother and hopefully also change the sheets, (maybe she'll empty the catheter bag?), and a nurse who will stop by once a week to evaluate.

This young, arrogant and snippy woman looked at me Monday and said, "You know your mother can't be left alone. She is helpless in that bed."

I sought a gracious response, but was appalled at this comment.  My brother, sister and I have completely re-arranged our lives to make sure that at least one of us is there all the time, and preferably two of us there most of the time, just in case.  Actually, it takes two people to move her, and she needs to be repositioned every two hours, around the clock.  Apparently, Miss Arrogant-Snip, as I now name her, thought we would just cavalierly leave this helpless woman alone as we uncaringly go about our lives.

So, by choosing not to keep mother in the hospital, and giving up on rehab, we are saving the government huge, and I do mean huge, amounts of money in Medicare charges.  Instead, we are essentially abandoned and critiqued in our quest to honor my mother's express directives and to live faithfully as those who choose not to feed at the government trough.

There is something terribly wrong with this picture.  Just terribly wrong.