My husband has had PSP for probably around 5 years now. I am 60 and he is 74. He recently had a Foley catheter put in as his bladder wouldn't empty completely. He can no longer walk, he can't talk, I have to bathe him, feed him, even turn the pages on his newspaper for him. He has no muscle control in his body. He is like a rag doll. However, I am able to manage to move him about with his hoyer and also his wheelchair. He is not able to help me with anything. But he does like to get out of the house at least once every two weeks and go to the grocery store. So I do that for him.
This is where I get ticked...his urologist said they would have home health come and change his catheter once a month...OK...so they called and said they would make an appointment to come to my house and do it. Well, the day we were going to go to the store, they called and said they were going to come up that day?????WHAT???? Is that called calling in advance to make an appointment??
Told them we were just getting ready to go into town....that they had not called in advance...they called later and told me that I would have to have him as an out- patient and bring him to them since he was able to still get out of the house as they did not consider him to be housebound as he was still able to leave the house to go to the doctors appointments and grocery shopping!!!!!. I told her that even if I was taking care of a dead person they would not be house bound as I had all the equipment to move them around!!!!
I probably wouldn't have minded as much if that was the arrangement that had been made in the first place.
I didn't remember her saying anything when I said that....I finally just said " never mind, I just get a little overwhelmed at times"
I do work 3 days a week and my 81 year old mother will come down here and keep an eye on him.
There have been a couple of times I didn't tell her that I was going to play hookie and take a day for myself when I should have been working....and have a co- worker fill in for me and just use my vacation pay.
I can't see having her work an extra day just so I can have some time to myself....it won't be the last time tho.
Sorry to ramble on...I just needed to get this off my chest!