Budd Posted April 9, 2004 Share Posted April 9, 2004 I can not believe at a time like this that we are having such problems with hospice. It has been the worst 2 weeks of my life when Chris was discharged from the hospital on 3/30. He was suppose to be on the Bridge program, half VNA half Hospice is what the social worker at the hospital told me. He comes home by ambulance, they think it's safer, so ok. Not a call from the vna or hospice the day he's discharged. We have had vna since July so this was very unlike them. OK, so now I had to figure out how to get him into bed from a wheelchair, took me an hour by myslef but I did it. He's suppose to have a very modified PT, ok, we wait for them to call. They didn't. The vna intake worker came over on that Wednesday. Never heard anything back that day or the next, again, very weird. But the vna pt intake worker shows up on Thursday at 3, first thing I do is ask her to help me get Chris out of bed, at 3 in the afternoon because I wasn't able to to it myself this time. I am now beyond belief that no services have started and "somewhat" losing it for the 1st time in a year. She tells me there is no bridge program and I have to decide then and there between vna and hospice. So I decide on hospice after all the wonderful things I have read on this board. The worst decision I have made in a year. Immeditatly they want to put him in a hospital bed, I have no problem with that but Chris does. He equates it to all his long hospital stays and death. So they suggest putting him in the recliner in the living room. Perfect! Little did I know that is where he would stay with no pt at all. Have a great vna home health aide who washes, changes, feeds him, etc all in 45 minutes, she only asked me for help putting on the depends. Ok, now we can't have her because she's vna and not hospice, even though they are the same agency, oops, different departments. So hospice will send the home health aide. I answer the door the next day and it's a 70 year old woman who complained the whole time she was here about him not being in a hospital bed. Had to take a break every 10 minutes because it's to much for her. Then calls the hopice nurse to complain he's not in a hospital bed. I of all people know it takes 2 to change his depends and I can't do it alone. I then asked the social worker for a younger aide. Can't do that until Monday. Today I had my mental health day and Chris sister came in for me. Granny, the aide was back with the hospice nurse to help her. Now he has a bedsore they're blaming on me for not having him in a hospital bed. Me, I say later to my sister in law, where is the pt we were promised so he could moved. He had pt the day he was released from the hospital but none since. It just seems hospice put him in living room waiting to die. All he wants to do is stand and stretch his legs but he's so weak now he can't. I have spent the last 10 days totally stressing out over this. They have no aide to help change him on the weekends or at night. And I can't do it alone at all. He is so humilated to be having his friends help me. So I've figured out that our hospice, for services is M-F 8am-5pm and heaven forbid you ask for anything off hours. I can have it as a private pay at $30 hour. The reason is staffing, staffing, staffing. They told me last Friday they didn't think he would last until yesterday. I know that we are so close to the end, any day now, and I have spent all this time stressing out trying to get help from them. Sorry this is so long, but I needed to vent, and you guys have the best ears around. A friend today mentioned going with another hospice service which I would gladly do. But after this agency, I am looking for referrals on the North Shore of Boston. So if anyone can recommed one, that would be great. Or I'm seriously thinking of going back to vna for the remaining time for acute care. Like I said, Chris only has days left, but can't he die with some dignity, some support, and what little services he needs. I feel so bad for him and for me that we have to spend these last days stressing out on his care. Thanks everyone so much for listening Debbie Quote Link to comment Share on other sites More sharing options...
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