Glory be! My husband was admitted into the hospice homecare program yesterday afternoon. I have been so lonely and often fearful with all the responsibility and decision-making for his care. Weeks could go by and no one else came into our home. My few hours out were always to run errands or go to my own doctors' appointments. Now at least there will be some folks checking on us with regularity. Even though I worked as an administrator of a hospice for many years, it is truly different to be on the receiving end of care.
It was interesting to see what would be paid for and what not (we are in the U.S.). My husband has received 100% of his nutrition from a feeding pump since an elective hip replacement in Nov. of 2011. Something "went wrong" following the surgery, he went in to Intensive Care on a ventilator and came out unable to swallow at all. We had never heard of PSP and no doctor suggested he might have it. There was great curiosity as to whether Parkinsons could come on so fast. It all seemed a mystery.
But you don't not feed a 250 lb. man who has been active up until this incident. So it was not an extraordinary or aggressive treatment at that time. But hospice has determined that it is "aggressive treatment" now and will not be picking up the cost. Our fingers are crossed that our regular Medicare will continue to pay for these feedings because it doesn't seem like an appropriate option to just stop these feedings. Certainly the inability to swallow IS a result of PSP.
Like Scarlett (from GWTW), I can't worry about that now.
The best news to me is that an RN will be seeing my husband regularly, a social worker will be available for our needs, an aide will come in 2 or 3 times a week to keep him clean, a pastoral counselor will come to discuss life and death issues, and a volunteer will be assigned to do "whatever" - no hands on care though. We will still need to pay for a sitter for me to get out, but oh, not to be so alone with it all.
Of course, my husband's condition hasn't changed from yesterday till today but my attitude certainly has. I just pray that I will be able to keep him home for whatever time he has left. I keep remembering the doctor's quote from New England: "A PSP patient will always outlive a 6 mos. prognosis, but will always be appropriate for a six mos. prognosis."