Has anyone had a problem with the care they received from Hospice?

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My 86 year old mother has Dementia and was wheelchair bound due to her legs contracting. 2months ago started screaming continually. She is on Hospice due to the fact that I was taking care of her at home after she had to leave assisted living and could use the assistance that Hospice provide. She is in mid to last stage of Alziemers. One night she started screaming and would not stop. I called the hospice nurse who arranged for her to be carried to one of their facilities. They got her there and said that she was dying and in pain. I told them that I did not think she has a bladder infection because she always screams after she urinate and has said that her stomach hurt. They started her on morphine right away and told me she had less than 7 days to live. She is now hooked on morphine and is worse that she was before.

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One of my brothers that live in Macon came up and stayed with my mother overnight and I went home and slept in my own bed after a week. I also talked to the chaplain and social worker on yesterday. The social worker is suppose to meet with me again on today. I am still struggling but hopefully I will get better. I do not know if I mentioned this in my previous posts, but when my mother was in the hospital, I asked her if she wanted to go to heaven and see Jesus and she nodded her head "no". I am not really aware that she knew what that meant.. I asked another question which required a yes answer and she nodded yes. I am not really sure if she understood since she was under medication. Lassie, thanks for your reply. It really gave me something to think about.
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God Bless. Let. Her. Go. it's inevitable. I am so moved by this that I am going to write a letter to MY daughter telling her in detail that I want NO extraordinary measures when the time comes, just 'comfort care'. I am not a fighter, nor do I have anything to fight FOR. When my time comes, I will be ready to do without blood thinners, operations, special medications. Put me under and let me pass!
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Virginia, my fried, how are things going? Were you able to make contact with chaplain or sw?

I especially like Stacy's suggestion about the reclining chair for mom's room, for you. Two years ago, my mom was in the hospital and not expected to survive the night. My dear sil kept encouraging me to go sit/sleep in mom5room, but the recliner they provided was horrible. I should have asked for a different chair; fortunately, mom made it through and is still with us! So ask for whatever you need and know that we're here with you.
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Virginia, you are ever so welcome! I know how difficult this is for you right now, and as Babalou suggested, go right now to the nurses station, and ask them nicely to please have the Chaplain and a Social worker in to speak to you! It sounds like you may not be getting enough rest, so do try to, whenever you can, even if it is only naps in the chair there in your Mom's room. If they don't have a recliner or comfortable chair in her room for you, pleas request on to be delivered. Surely they have one nearby. Make sure you are eating and drinking enough too! Speaking from my own personal experiences, this dying process can take a few days, and with my Mom, once she became unconscious and "snowed under" from the Morphine, which she needed to keep her comfortable, it was about 6 full days before she passed. It's a very difficult journey, especially if you are mostly alone in all of this. Keep reminding yourself that your Mom has had a good long life, made happy by you being so much a part of it, and while it is so hard to let her go, Sweetie, it is time. There IS Nothing more that you could ever have done, that would have brought her back to her previous healthy self, and it would only prolong her pain, to attempt heroic measures, or even other medical intervention. It is so important for you to be getting some counseling right now, and you need to be proactive about getting it! Speak with the Nurses there, and tell them that you are struggling. They are there to help you too! I am thinking of you and praying for peace for you and your Mom (((((HUGS)))))
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Staceyb, thanks for your reply. It was very helpful. I am just reading it. And thanks to everyone. I do not know what I would have done without the encouragement and support of this site. My mom was my best friend and I have always been some what of a loner without any social life.
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Are you asking to talk to the hospice social worker and chaplain? Call again. You need help and support from them both right now. Virginia, im not a doctor, but the fact that your mother's body is not processing the fluids they were giving to rehydrate her seems to me to be a sign that her body is dying. Blood thinners could cause another stroke i think, in her fragile condition. Virginia, know that im thinking about you and mom today.
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Bablou, thanks for responding. I know I cannot fix the dementia, but could I not have done something to fix the blood clots. I should have insisted that they start her on the blood thinners, she could have gotten better. My mother is a fighter. They have increased her pain medicine and she no longer wakes up. Her breathing is rapid and loud. She looks peaceful. I had a nightmare last night whereas I watched someone being killed by a man and I ran and did nothing to help. Am I losing my mind? I am not at peace with my decision not to treat her. I asked to speak to a social worker but she did not show up. I also asked for the chaplain but I have not heard from him. Thanks for listening.
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Virginia, I too, had my Mom on Hospice, in a hospice facility and in the end, it's their bodies just shutting down. The very best that you can do is to make sure that she is free from the pain of her leg contractures, by allowing the most allowable.Morphine the Dr's feel is nessasary, even if it makes her sleep most of the time, and to just keep her mouth moist, using those little spongette swabs that they will provide you with. Her hearing will be the last to go, so every so often, chat with her, telling her how much you Love her, and assure her that you will be alright, and that it's OK to go (to pass), she needs to hear these words come from you to relieve her of the worry, that you will be OK. I know how difficult this is for you right now, but try to remember all of the wonderful things about her life, and your life together. Thank her for being such a wonderful Mom, and for loving you as she so clearly did, and speak to her of all of the great things you did together. This will help you too, knowing that she gave you all that a mother should give to her family, and recall all of the many things that you had together. If your Dad has passed away, then remind her that he, or other loved ones who have passed before, will all be "there", waiting for her.
Putting your Mom through more tests, procedures and hoping for a cure is not going to happen, and the kindest thing that you can do for her now is to make her passing as stress free and pain free as possible. You too, need to get rest whenever you can, and if you can fit in a Dr's appointment for yourself, to explain to your Dr just what you are going through, he may be able to give you a Rx for anxiety, to help you with your emotional pain. It is very sad to have to let your Mom go, but I've been there too, and you will get through this! If you have a pastor whom you can speak to, I'd recommend that, if not, I'm sure that the Hospice facility does, and they can be a great sounding board, and help you with your grieving. Remember that the Hospice folks are there to make this end stage of her life as pain-free and gentle as possible, so do rely on these folks to to their jobs well. My heart goes out to you Sweetie, I'll pray that your Mother's passing is gentle.
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Virginia, It is time to let your mother rest. She has suffered long enough. There is little the doctors can do now that will not cause her more pain and suffering. She is not going to get better no matter what they do. I know it is hard to say goodbye after caring for her so long, but she deserves a peaceful, pain free passing and she is depending on you to help her with that.
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Virginia, your mom is not going to get better. No miracles are going to occur. She is suffering and it is time to let go. Think about what is best for her, gather your strength and don't prolong this. She needs comfort care and pain relief now. Please help her. All my best to you......
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