Topic: My Hospice experience was not the greatest.....
I considered my hospice team a total failure. It was a bunch of little things that added up, and the worse he got the less they gave.
The last visit we had with the oncologist, they suggested Hospice. AFter admission, it took me almost 3 weeks to get him a simple massage (i hoped for a few times per week) and it was simple. I did them myself after that. Meanwhile he was absolutely falling on his face (not literally tho), declining very quickly. See ya next week was the attitude. I had one of my nurse friends teach me how to give bed baths, she brought a nice bath pack you put in the micro, no rinse and very handy. Hospice sent out a lady with no supplies at all. No nothing. She missed his hand, armpits, feet and said she did not want to do his privates. At least she was nice. Thank God Rick was out of it by then, he would have been so embarrassed. I asked the nurse about the bath pack, she knew nothing about it. I am wondering now if they all just fell off the turnip truck. When I called in the eve shook up , Rick was basically drowning with so much liquid in his lungs, it was spewing out his mouth and nose, they said to give him some opthalmic drops under his tongue (provided in his comfort pack) But I could not even find his tongue hardly. Meanwhile family is upset, I am upset, no hospice help anywhere. I called my nurse friend who does womens health care, she knew more and at least explained what was happening and why and to lift his head a bit. Hospice did call thenext morn and confirmed the weekly appointment for Thurs but he was dead and gone by then. In the meantime I told them I no longer needed the "help" as I considered them not to be any. The socal worker called and asked what the problem was and blamed it on my grief. Before I hung up she said "Mrs Harder, you cannot possibly give your husband quality care if you are mad at us" I promply said "Yes I can and it wont be with you". I wont ever forget her comment. That was after she told me that my friends and family were doing me a disservice by giving me conflicting information. I dont know what I would have done without the advice and help they gave!
There were alot of other red flags, and I started to question myself knowing this is a time when you just want to be mad at something. It did seem to others too that they were a decade behind. I just got no comfort from them what so ever.
I dont believe that my experience is the norm for hospice, but consider asking some specific questions about the services. I hope this helps someone and that your experience is as good as the reputation.