Tuesday, January 15, 2013

She Said No

Life is heaping disappointment upon disappointment like a cave-in where the sand is pouring in faster than the rescuers can dig the trapped one out. I have a well-earned reputation for solving problems, being creative, slaying dragons. This time, too many areas are all coming apart at once and I don't seem to have the wherewithal to deal with even one of them any more. And if I come apart at the seams I am not sure that I can ever be stitched back together.
My afternoon caregiver gave her notice last week. She is the cornerstone of my home care. Knows the mechanisms of my urostomy, meds, etc. like no one else. Takes great care of me. Losing her reveals the tremendous vulnerability I have depending on caregivers. They have their own lives to live-as it should be. I found a new caregiver, but she faces a 10-week State approval process. So, what to do. My options seem to be reduced to either a rotating door of faceless untrained temps or foster/nursing home care for two months. Then like a breath of fresh air, a relative offered to pay for her daycare, if she would agree to stay. Today, she said no. 
I am so alone. No disrespect to all of you who love me, who visit, who pray, who give respite, {the list is endless}. But at the end of the day you each go home to your own list of joys and sorrows and lives to lead. As it should be.
Somehow I have to scrape together enough disparate pieces to make a life worth living out what seems like dribs and drabs of old paint too inadequate to cover a weathered barn. My doctors can't seem to be bothered; my MS seems to be winning; my missing appetite seems to get worse [46 pounds in 8wks]; my soul seems as dry as a wheat field in winter. Every time hope wends its way in, it seems to wither. She said No.
Now what do I do?


Judy at Peace Be With You said...

“…dribs and drabs of old paint too inadequate to cover a weathered barn … my soul seems as dry as a wheat field in winter ….” If only the beauty of your words could restore your health. ((Janine))

Nedarb said...

It means so much to me that you share your struggles here. I love your writing.


Dave Hingsburger said...

Oh. My. Gosh. I am reading this several days after it was published, I absolutely hope that something somehow got resolved in the meantime. Vulnerability comes with need doesn't it and it gives such power to others and to fear. I hope it goes well.