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

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.

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!

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.

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)))))

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.

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.

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.

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.

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.

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......

Virginia, it really sounds like your mom's body is shutting down. Do you have a pastor you could reach out to to discuss this?

You can't "fix" dementia. It sounds like her poor broken brain is trying to take her to the next level. Can you accept this?

Hello everyone, It is me again, still going back and forth about what is best for my mother. I cannot seem to find any peace with any decision that I make, After taking my mother out of Hospice last week and taking her to the hospital to find out what is really causing her pain which makes her scream out. The test were done and showed that she had a stroke, she has blood clots in her lungs and stomach and a bladder infection. She was given fluids,and antibotics. the fluids caused her to make a guggling sound and the doctor advised taking her off because the fluid was building up in her body. They stated that it was not advisable to treat the blood clots with blood thinners because of the complications that the blood thinner could cause. They stated that she was in late stage Alzheimers and did not have a quality life and I should just try to make her comfortable. My mother memory was getting bad but she did know me most of the time and could answer questions sometimes with yes and no and sometimes in sentences. The doctors and my three brothers (who did not visit her often and none now since this diagnosis) want me to just let her go. I love her so much and do not want her to go. I have taken care of her for the past eight years, I went every day when she was in assisted living until the day she had to leave there and I brought her home.
Should I insist that they treat her for the blood clots? I was convinced to allow her to go back into a hospice facility yesterday and she is there now, but I am not sure it was the best choice. I have no one to talk about this to except you all. Please advise me on how to do the right thing.

Oh, Virginia! My heart goes out to you, dear. Be well. Stay strong.

Windyridge, you are right, it is not about me. Oh, how I wish my mom and I had the discussion about what she would want in a situation like this. I encourage everyone to have the discussion with their love one before this situation happens to them.

Virginia, try to put yourself in her position. If you were in advanced dementia with all these health problems would you want to carry on? There is no quality of life for her at this point. I know it is hard. I'm very sorry for you. But remember, this is about your mom, not about your feelings.

Tests results are back. She has several blood clots in her stomach and lungs, a bladder infection, low sodium, and dehydration. She is on the full dose of morphine and has not awaken since yesterday. I am having a problem letting her go.

Virginias55: If a person is screaming non-stop, there is a reason. This action takes energy and is motivated by something. I surely would not worry about her taking morphine. Give it to her and relax about that. Being accustomed to getting morphine and then being cut off would be enough to make Hercules scream, so hopefully that wasn't the reason. She will need specific extra medicine to prevent constipation....always with morphine. Which sounds like you are using, but hopefully using all the time.
A urinary tract infection can cause people to go completely crazy; especially if untreated it can go to a kidney infection which is incredibly painful.
If all that has been treated, does Mom still scream? Does she say why she is screaming? Can she point where it hurts?

I had a less-than-ideal experience with the first hospice evaluator and changed hospice companies. Much better experience now, to say the least. It's unfortunate that the assisted living facility would not work with hospice so your Mom could stay there through the end.
If she's still screaming, ask for a comprehensive physical exam and if that finds nothing significant, ask for a psychiatric evaluation for some calming medications. No one can put with the non-stop screaming. Best Wishes.

Virginia, please let us know how things are going. We learn from each other's experiences.

I am at the hospital now and can find out what it going on and make an educated dicision concerning my mother's care plan. My experience with Hospice has not been good but I know this is a rare experience.

Give her the morphine, at least a half dose, so she is comfortable. If you go to the hospital, Hospice will stop immediately, so you will not get help at home. Muscle contractions and no appetite are end signs. The contractions are definitely painful and need morphine. PLEASE

Actually this is the third time that she has been on Hospice. The first time the assisted Living Facility suggested that she be evaluated for Hospice and she was approved due to her Alzhiemers , she was on it for nearly 2 years, the second time she was on it for about 6months but her condition improved and she was taken off. Her only heath problem has been the dementia and contracted legs. When this particular Hospice evaluated her she was screaming none stop and they approved her. She has been on it less than 2months. The doctor is refusing to give her fluids and suggested that I take her to the hospital which I will. There was nothing else going on. She cannot carry on a conversation but she can answer questions but she no longer ask questions. She does know who I am most of the time but some times she does not.

Someone has agreed to hospice. Is your mom of sound mind and accepted hospice or are you her POA or guardian and agreed to hospice? If you are in control you can have her removed from hospice.

You are saying that she went into hospice because she started screaming one day. There must be more going on than this. Docs don't order hospice unless they have determined the patient has 6 months or less to live. If this doc is messing up that badly you should consult another immediately.

Thanks to everyone that replied. All replies were helpful. Today I am totally at a lost as what is the best thing to do. The Hospice doctor says that I am in denial that my mother is dying (his only contact with her was when she started screaming one day in pain). Here is a time frame of what happened--Dec. 1, 2016 she moved out of assisted living and in with me.( we hired a registered nurse to take care of her doing the day while I work). The adjustment period was ok even though her entire routine changed. Her appetite had always been good and continued up until the day she went to the Hospice facility in Feb. due to the screaming which just started one day. I contacted the hospice nurse who arranged for my mother to be taken to the hospice facility. From that day everything has been downhill. I told the doctor that my mother had not had a bowel movement for over a week even through we gave her a laxative and used suppositories, that she complained of her stomach hurting, and that she constantly had bladder infections and that she usually screamed after urinating. The nurse or doctor did not listen to me,and started her on high doses of morphine. It was only after she had been in the facility for a week that they ever treated her for being impacted or checked for a bladder infection. Test proved that she did have a bladder infection (bacteria in her urine) which they said did not need to be treated and she was impacted. I took her out of the facility and took her back home. Now she will eat and drink only a little if anything. She is really in pain now if we do not give her the morphine. she ask for it now. What do I do now? Do I take her off Hospice and put her in the hospital so that she can get fluids or something to get part of her strength back? She cannot eat or drink when she takes the prescribed dose of morphine and doctor refuses to lower it. What do I do?

Your Mother's legs contracting must be excruciating pain, and if she were taking any narcotics to assist the pain, it can really mees with the bowels, causing severe constipation. Now that the Hospice staff has addressed her constipation issues, perhaps a goog meeting with the Des and staff, might be able to create a care plan, where that doesn't become a problem again. Try to work With Hospice, they are doing their best to help to alleviate her pain, and guide her gently through to the end of her life. They do have her best interests at heart!

You need to disscuss her case with the hospice case manager. The obvious question is, is this woman ready for hospice, at the end of her life, or was this brought on by the obstruction, pain and screaming. I would also have some question about the length of time it took to clear the obstruction. That sounds horrible and should be addressed.

my mom was given a presciption for morphine when she was in the end stage of Alz. She had severe spinal stenosis, arthritis throughout her entire body and had been bedridden for 3 months at the time. It was for 1 to 4ml every 4-6 hours for severe pain. When we gave her 1 - 2 mls for pain and the bottle was empty the hospice nurse questioned why we were giving her the medicine. We said 'because she's in pain'....they thought we were giving her too much, and complained...despite the doctors orders...I have to say I ignored the nurse....my mom was obviously in pain and at 92 I didn't care if she became addicted...I only wanted the pain to end so my mom could be comfortable before she died.

My mother only went into Hospice the day that she began to scream after a not having a bowel movement for a week. The emergency room doctor stated that x ray showed that she appeared to be impacted. She was given a laxative but did not have a bowel movement. I told the Hospice doctor this but he insisted that she was dying and started giving her morphine. After a week of being in the facility they finally gave her an enema and laxative and she had a large bowel movement even through she had nothing to eat for that week. She is no longer screaming and it still alive after three weeks even though the doctor said she had less than a week when she first went into the facility. Her screaming did not mean that she was dying.

If the family is clearly overwhelmed by care and nearly hysterical themselves, it is better for both the patient and the caregiver to move to a facility. If the caregiver had given the morphine as prescribed, the poor woman would not have been screaming in pain. Withholding the roxanol usually results in a full blown meltdown as you have experienced.

She's 86, screaming in pain, end stage alz. Does it really matter that she'll get hooked on morphine? Let hospice ease her pain. Im very sorry you are going through this.

No problems at all, Hospice was great when the time came that my Mom needed their services.

Remember it is the Hospice doctor that decides whether a person is ready for Hospice or not. The Hospice staff have been down this road 100's of time, and are familiar with the signs that someone is near to death.