Burt’s roller coaster has just been on one dip after another. His being bedbound poses a serious risk. Today we are expecting a visit from a nurse from VNS to assess the damage.
We are treating two sores and the beginning of one on his butt cheek. Perhaps the nurse will have some added wisdom.
New York State has a “waivers program.” It is meant to keep patients under its umbrella at home.
Starting Mar 1st, we will have 24 hour coverage.
I look forward to additional help to make Burt more comfortable. I have both hope and trepediation.
It will upend our lives, mine most in particular. I have set up an alcove in the living room as a bed sitter space. I tested it out last night.
Burt had been asleep when I came home and was sleeping still. I retreated to the bed in the living room. I fell asleep reading and awoke to hear him talking.
At 5:30 a.m. he was awake enough to eat the dinner his aide had intended for him.
His conversation while I fed him was mostly gibberish and included the need for me to identify myself. He seems so happy while I feed him, cheery and talkative.
He said something unintelligible but concluded with “she was nice to talk to.”
Soon we will have people around, or rather a person to make sure Burt is dry, to turn him to relieve the pressure on his skin. There will be someone here for him. I feel inadequate to the task on my own.
We will be able to go with Burt’s schedule. Those evenings that he slept through supper, he can be fed and get a drink at midnight or whenever he’s awake.
It will be an accommodation for me. I will manage, I will have help. I have both trepidations and hope.
this is our life 