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The only good thing about hospice now days is to stay away from it, cause if your not dead or dying you will be if you get into hospice.
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gully81 I'm so glad that you were able to get her out of hospice cause they can take a perfectly fine person who is not terminal and make them terminal with the drugs that they give.
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gully81, So glad there is a good ending here.
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My grandmother is home and much more happy. She is eating, drinking, talking and the same grandma she was before this mess. She was on home health for the longest time and how she ended up on Hospice I have no idea but we are not doing that again.
Thanks for asking
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Surely a discussion is a two way thing, negative and positive opinion? The thread title has a question mark at the end of it which would suggest to me it isn’t actually a free for all where hospice bashing is concerned. If you’re going to enter in to discussion with others you have to accept they may hold a different opinion to yours. Can’t quite believe people seem to be actually arguing on a thread of this nature given that most who contribute are likely to have lost someone who mattered to them. You’d hope there would be some kind of unity in grief, clearly not.

By the way suggesting counselling at times of bereavement is not questioning another’s sanity. It means something completely different.

It is quite clear some feel very strongly that their loved one was wronged in some way. I totally support their right to voice their concerns. I would and have offered up a different slant on what that might be, how that might come about because having recently experienced the loss of a loved one under Hospice care I think I can pass comment. Some however are suggesting their loved ones were murdered ‘if I understand them correctly’ which is obviously shocking. If that was the case you must of course bring it to other peoples attentions but not stop here. If I believed for one second that was the case with my father I would do everything in my power to seek justice because if that is what has happened then that is what you deserve, justice.

You have my deepest sympathy and I appreciate you sharing your difficult story but I think you really should be speaking to the police.
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There is so much pain on this thread and it's good we're all getting our experiences out here.

Flowgo, I meant you no disrespect. Perhaps I'm projecting because I could use some counseling myself from dealing with my dad's death and the resultant issues in dealing with my mother who is a classic narcissist. It does do a number on your head.

I really do wish you the best outcome possible for you in a horrible situation. Yes, I do believe there are evil people out there. I am sorry you had to experience that. I feel even more fortunate that we had the experience we had with my dad with hospice. Each individual, each family, each illness is different. Also the quality of the education about the dying process varies from each hospice. It's apparent that some of them aren't doing their job about educating people. I'd NEVER advocate euthanasia. It goes against my morals totally. My father's dying process with brain cancer was so apparent, it came down to comfort care. That is why I am so thankful for them. I couldn't have handled his violent, AWFUL whole body seizures on my own. The Ativan and morphine calmed his horrible pain and anxiety. I wouldn't wish my worst enemy to travel that road alone.

You are correct. Be vigilant every step of the way with your loved one. My brother and I tag teamed with my dad and were there 24/7. It was grueling, but it was worth it. He died exactly 5 minutes after my brother left . He always said he wanted to die alone when he could still talk and my brother wouldn't honor that. Of course my brother was living in Europe for 30 years prior visiting every few years. Those 30 years were all on me and still are with mom.

So yeah, I know a little about dying a horrible death and elderly care and hospice. And I'm still doing it.

Once again, I'm sorry your experience with the doctors and hospice was really horrible. People need to be really careful in their choices for their loved ones. Usually it's a crisis situation and no one is prepared for the questions that need to be asked. It's called being human and not knowing everything, not being a medical professional and we need to forgive ourselves for all that happens so fast during that time.

I wish you all peace and healing. Cry a river of tears, I know I did, and time will help it hurt a little less.
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How is your grandmother doing? Our experience with hospice was very strange, and cannot be fully understood. If she knows what's going on, eating, drinking, sounds like she could stick around for many years. Is she still on hospice or was their service revoked? Curious, who initiated the hospice care?
Thank you for replying. Cassestar
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Darlove, that's a sad story indeed and I am sorry for your loss! The conflict over the colonoscopy only made things harder, but if they were right about her not even tolerating that, her chances of tolerating surgery and/or chemo for the presumed cancer were even less. Its true that you and some others in the family might have felt better about it if you had "tried everything" rather than gone to hospice, but guessing from your point of view or mine will never really answer whether that would have been better or worse for your mom. It really could have gone either way. You decided what you decided based on what your heart thought was best. I went through a lot of second guessing about the things we decided too, before eventually feeling a little peace about it all, and people on here helped me with that.

Grief does leave you feeling like you can't go on sometimes, that is totally normal. But if you find you are having thoughts of harming yourself or *really* not being able to go on, call a hotline, and if it is just really getting hairy for you to cope, seriously see if you can find at least a grief support group for yourself. We all need those chances to "debrief" and they can be hard to come by.
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JessieBell What would you say for the ones that did not have any pain and worry yet they have to pass over for what reason just because they were elder. It is getting so bad that elders who are healthy are losing their lives to these kind of medical staff. This has seriously got to stop.
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Thanks for the hug surprise. Grief is very hard on its own to deal with but I managed to get through it before, although it was very difficult. Some very special people in my life lost their life to old age and other natural causes and my dad lost his battle to cancer.Yes grief from natural losses is very difficult, but this is the first time that someone I loved lost their battle to a medical staff. Having people taken before they are ready to go is just wrong, even if they are dying such as in Darloves case.She did everything that she could do and has to realize that it was not her fault what happened.If she is like me no matter how many people tell you to not feel guilty it does not penetrate. Darloves, one day I hope these problems will be solved so families will not have to suffer the way we have to suffer now.We need to fight hard for this. I hope euthanasia will not be allowed to happen. I hope that one day medical staff will not be allowed to get away with this and have it swept under the table like what is happening today. It is just not right and so unfair. No one has the right to cut a life short.There are other ways to deal with pain and anxiety that will not kill a person. My mom was not in pain nor was she needing powerful deadly sedatives. She just came in for a minor elective surgery to help her, not to kill her.She would have never thought that or wanted to have her life taken as she did. I till this day feel so much guilt and pain over the fact that medical staff who are supposed to help people are taking lives instead.I have suffered from ptsd etc from this horrible trauma and tried emdr treatment and talking therapy but the psychologist basically said because this case has no closure it is like an open wound, so this treatment does not always work for people like this.Something needs to be done to stop this from happening and then maybe people can begin to heal from these atrocities.
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With advanced liver cancer as you described (multiple spots), I would expect that your mother had swollen legs, just from the little I know about liver and kidney function. The fluid build up as well as the toxins which would build up in the blood would make moving the skin very painful. There is less circulation of blood in the legs when a person is not walking around, so there would be toxin build up there pretty early compared to other areas.The rectal tumor had to be very painful, and the pain drugs may have her inhibitions about showing pain when she was shifted.

Your mama lived a good long life. She did not want you to rescue her at the end, she wanted to shield you from the pain of her passing. She loved you and knew how hard you would take this. Go out and have a good life for her sake if not for your own. You know that is why she hid her pain, so you all would not worry about her. I imagine she said that a lot.

Would she want you to go help people who have lost a loved one? Hospice needs volunteers to visit with patients who are dying and with their families. Would you have a special talent you could share, like singing? These things bring comfort to people who are in hospice and who know the end is near. This is a way you can do something for your mama even now. ((Hugs))
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Death is hard to go through and hard to watch, DarLove. I can tell you loved your mother and you wanted her to feel better. It sounds like she had cancer that was causing much damage and pain to her. It wasn't anything that you did and it wasn't the drugs. You did everything right to help her on her final days. Some people go through pain whenever they leave the world. I wish everyone could have a peaceful, pain free death, but we don't have much control over that beyond trying to help ease the pain.

It has just been four days since you went through the trauma of watching your mother's death. No one can prepare us for watching our loved ones die. It is a helpless feeling, because each person has to cross over on their own. I do find comfort knowing that they wait for us on the other side and that they are living their lives free from the worry and pain that they had here.

Nothing was your fault or anyone's fault around you. It was the sickness that let your mother know that her time on earth was finished. I hope that soon the trauma and hurt you are feeling will fade and you will remember the happier days with your mother. It will take time to heal. Be good to yourself these next few days. We know what you are going through. Grief hurts, but it shows how devoted your heart is to the people you love.
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I feel as if life is no longer worth living.
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Thank you so much Surprise & JessieBelle! I welcome comments such as yours so that I can have a better understanding of why my mother died. They never took a biopsy to confirm her type of cancer so I guess I am feeling so guilty that I am trying to find an excuse for her death? I watched her take her last breath & she looked at us as if she wanted us to rescue her. I am going to live with the memory of that look on her face. I feel like there could have been something else that could have been done to assist her with a peaceful ending. Does anyone know why her legs were painful to the touch? She literally screamed each time we tried to move her legs while giving her a bath. I always thought that she would have a peaceful non-suffering death but it sure didn't turn out that way and I am feeling so heart broken & hurt about that. Not sure if I will ever get over this 😭
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DarLove, I am so sorry you lost your mother. Hospice care is palliative care. What surprise wrote is what I was thinking. It may be that in easing your mother's pain that she was able to quit fighting it and find her way to the other side. If this is so, then the pain relievers were a blessing to her. Life can become too painful to carry on. I know you miss her, but I know she left part of her spirit with you.
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DarLove, it is so sad when you are not prepared for the death of a parent. If your mom had a mass at her rectum AND spots on her liver, her low hemoglobin was because she was bleeding to death from her cancers. 3 units of blood is a ton - little old ladies only have about 5 in their whole body! My mthr had the same type thing happen with low Hg, but the cancer had not spread, and she only needed one unit in emergency transfusion.

I'm afraid your mother was already on death's doorstep when she went to the hospital and they merely propped her up medically. She had probably been in a lot of pain for a very long time, as my mthr had been, but not admitting it to anyone because of her embarrassment. The morphine likely gave her the first comfort she'd had in years. I hope my mthr's death is as peaceful as yours was. Palliative care seeks to eliminate discomfort, and serious cancer is a painful state. From the patient's perspective, it sounds like she had a good death.
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This is my sad story 😞
My 89 year old mother passed away on June 5, 2015. It started out that my mother was rushed to the hospital due to a low Hemoglobin count. While in the hospital she was given 3 pints of blood & a cat sca which showed a mass on her rectum as well as spots on her liver. The doctors wanted my mom to have a colonoscopy but I was against it due to her weakened state as well as her age. The doctors kept pushing us to let my mom
have this procedure and it caused a lot of friction within my family due to difference of opinions. Finally a doctor who handles hospice cases told us that there was no need for my mom to go through with the colonoscopy because she probably wouldn't make it through the cleansing part of the procedure. Meanwhile, while my mother was in the hospital they gave her 5 mg of morphine without our permission even though we asked that they not give morphine to my mother. After that she could no longer walk and her health deteriorated. The doctors then started pushing us to put my mother on home hospice care. We wanted her to have palliative care but for some reason they kept trying to push hospice care for my mother. They even sent a hospice care specialist to our home although we asked for palliative care. The person they sent had very little knowledge of palliative care. Also, my mother was always prescribed Tylenol with Codeine for her pain with back-up of the Fentanyl pain patch. Due to severe itching, my mother had to stop using the pain patch and the RN then told us to use Oxycodone and also Ativan because my mother showed signs of agitation. My mother went from being alert & eating to almost comatose & not eating at all. We watched her slowly die due to the many Oxycodone that we were told to give to her. At first they prescribed 1 five mg Oxycodone every 4 hours and then they prescribed 2 five mg Oxycodone every 2 hours along with an Ativan. We truly believe that our mother died due to an overdose of Oxycodone & Ativan. Her breathing became very labored after using the combination of the drugs and she was never the same. I'm sharing this story with everyone because I believe that Hospice Care is becoming more & more dangerous for the elderly. I believe they push death via Hospice Care and they try to drug the hospice patient as much as possible in belief that death is better than pain. Why not treat the patient to possibly take away the pain as opposed to masking it with heavy-duty drugs? I want to do something about this so that no other person will go though the pain that we are going through because we think that more treatment could have been given to our mother. I have created a Facebook page titled "Hospice=Death? I want people to post their stories there and we are going to try to get the FDA, Congress, etc. to take a look at these cases and develop a law against over-drugging an ill & elderly person. We must take a stand against this because this seems inhumane. Please help us with our quest to look out for the sick & elderly and stop Hospice Care from pushing death on the elderly by giving them deadly combinations of hard-core drugs and find a more peaceful & dignified way for our loved ones to go through their journey. Thank you!!
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vstefens I think we have a lot of side effect ignorance
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You are awesome, so glad she is doing well and that someone is able to be with her 24 hours to protect her from the deadly sedatives. Now days you can't trust hospitals and nursing homes like before. I found out the hard way. Now I just want to keep spreading the word to help others keep their loved ones safe.
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I knew of a friend of a friend - sorry not a personal experience - who was put on hospice and when taken off a pile of meds, thrived again and went back home to live on. I did once get a patient off something that was about to put them on hospice too. So, these stories are not impossible. You know there are a lot of climate-change deniers out there? Well, in the medical profession we seem to have a fair number of side-effect deniers. Not a good thing.
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Yay, gully!! Assumptions get made and that is the biggest reason our loved ones need advocates like you!
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Flowgo- Yes there is someone with her 24 hrs a day. They tried to give her ativan last night and we told them NO. She got out of her bed and into the chair today
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Truthseeker my mom had pancreatic cancer as well and was stage 4 when she found out January 29th 2015. It is a horrible, disrespectful cancer. It has no mercy...Sorry for your loss..
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Irishboy good comment. Really she says I need help for my issues, I only need trauma counseling for the horrendous trauma I was put through in dealing with the most evil monsters that I have encountered ever in my lifetime. I don't believe that I have ever dealt with a murderer before and that is too much trauma especially when they took my mom's life and are still not behind bars. WHY AND HOW CAN A SUPPOSED HUMAN BEING DO THIS TO ANOTHER HUMAN BEING PURE EVIL.
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windytown, why did you come on a thread specific to people who had bad experiences with hospice to argue with them? If they want to bash their hospice experience that they went through with their loved one, let them.

People don't make these events up. Who are you to question them?

And don't tell someone they need mental help and than wish them well, so very disingenuous.
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windytown The doctor can lie to get someone in hospice that is what happened to my mom.They said she had many end stages of diseases that she had never had in the first place and then labeled as terminal. So she was supposed to be in there for end of life treatment which happened to be a huge lie not a mistake a LIE. She was in a coma from the sedatives so it was easy. How could she be at the end stages if she never had those diseases in the first place. The investigators confirmed that. I am the most horrified one of them all on here since I had to experience this kind of horrendous treatment and killing. This kind of killing is so much different then just a natural death. I have experienced that more than once. I lost some people who meant the world to me but they died on their own, big difference. People should be warned since this happens so much. It is not just an isolated incident.If I can help one person not be harmed and killed that is good enough for me. So I will continue to post. Sometimes the truth is extremely difficult to deal with, but it must be known to save lives. I wish I would have known about this before this happened. I would have had a better fighting chance at saving my mom from the horrible medical staff. The hospice is not the only ones who kill. It happens in nursing homes and hospitals also.People just need to guard their relatives against the evil. It is not all good out there as I found out the hard way. I guess you would have to have walked in my shoes to see what really happened then you would know how evil things can be in the medical field. As for moving on it is very difficult to find closure in a situation as this. Normal deaths even if very difficult one can find closure and accept it, but not in my case. I have to accept that I will never get closure and my moms killers are not behind bars where they belong.
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flowgo, How does a person get into hospice if they are not terminal? I've never heard of that happening in my real life. A doctor's orders have to be signed and Medicare has to approve it. Medicare pays for the services and there is a review every three months. They don't want to just be throwing money away on a non-hospice patient.

If a patient has improved, they can stop hospice at any time. My dad's hospice told me of many patients that improved and went off hospice. They were happy for them for the respite they had from the DISEASE that was killing them.

I realize this is a small corner of the internet universe. Your and my opinions are ours alone. This is a place of comfort and advice for many people seeking help. I know AC has helped me on my journey with my parents.

I am so sorry your experience with hospice was so bad. I truly feel sorry for you and I hope you find solace somewhere. I know how difficult it is to find peace after a loved one dies. I understand. I am still on that road with my mother. It is challenging to say the least.

I feel very strongly when I say this to you, not all hospice experiences are like what you describe. Murder is not a word I would use lightly.

There are people just finding AC that are reading your words that are probably horrified. I think that is your intent. I want to reassure them that every experience is different. They are not all like yours, and I'm sorry you had to go through that.

My father had a Gliobastoma grade 4. I can't imagine how we would've done it alone without hospice. Ativan calmed him and morphine kept his pain down. Without it he would've had multiple violent seizures that made his brain bleed. His tumor made him blind and he lost the ability to speak, not from hospice, but from cancer.

You really need to back off from your hospice bashing. I suggest you get some personal counseling for your issues. I wish you well.
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windytown There are people who go into hospice who are not terminal.I knew of people, some even did not need to stay in hospice after they recuperated. As far as the dying goes they should not be getting anything that is used to kill them faster. They should be allowed to die on their own. That is what I'm upset about and the ones who are being murdered just because of their age, like my mom, that is another situation that is unbelievable. There are hospices that used to not do this, but from what I have seen and heard about in other peoples comments all over the internet and others I have talked to that is not happening so much anymore. I would like to think that there are some hospices who still care for their patients without killing them or helping them die faster. Im thinking that is just probably a fairy tale these days though.
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windytownThen why are people who are not terminal going into hospice instead of getting treated for curable conditions or diseases that would not take very long. That does not make any sense yet they are somehow ending up in hospice. There are nurses in hospice and hospitals and nursing homes who believe in mercy killings like giving them as much sedatives or morphine or doing something to help them die faster.
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flowgo, A doctor has to order hospice, usually with a three to six month life expectancy. People just can't be "put" on hospice at someone's whim.

You're making some pretty outlandish accusations.

And your final statement about hospice not being a death sentence for anyone even the dying. That makes no sense whatsoever. Hospice doesn't kill them, disease kills people. The medications they are given ease the transition. They were dying in the first place and nothing could prevent that. Hospice is comfort care for the actively DYING.
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