My Hospice experience was not the greatest…..
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Robyn my sincere condolences. You did your best for him despite what the “team” didn’t do. I am so glad you took the time to post, and also thecdr, thank you for saying that about reasearching earlier. My husband is the one with cc (but no current signs after surgery and follow up scans) However, he became obsessed with what his last days might be like…I’m not sure why this wondering took hold of him, but the good thing was that over the holidays at a gathering, he met a lady, a relative of a friend, who is a hospice director in another state. She spent a lot of time visiting with my husband which I sure appreciated because he was so depressed, and he said later, the best advice she gave him was to investigate the hospice services in town before he needs them. At the time I thought he was being to morbid and negative, but I realize this is my husband’s way of being knowledgeable and feeling in charge of something. There are two or three hospice groups in town. A painful subject and conversations, but we have to face them . Thanks for the info.
Oh, wow, Robyn. That’s just terrible and completely unacceptable. I’m not sure the appropriate reporting authority for hospice workers into your state (aren’t they generally nurses?), but I would look into that and file a formal complaint. My friend, Kelly, also had the bile coming out of her mouth and nose, but there was never a question on how to handle. (we ended up having a suction machine that would help us clear her mouth and nose) Kelly’s hospice nurses were there 100% of the time once she asked to transition to hospice. That only lasted about 2 weeks, but never once was Kelly’s husband, or any of her friends, wondering what to do about the fluid, pain, etc… I just cannot believe that the social worker would say such insensitive comments. If you want to pursue further, I would wait for a little time to pass and then try working your way up the ladder until you find the right person that will actually listen to what you are saying.
Big hugs to you – you are in my thoughts and prayers.
Robyn I am so sorry you had this experience but thank you for writing about it. Your experience points out the fact that research is absolutely imperative and the earlier the better. your comment about asking specific questions is right on the money
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.
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