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Without Hospice keeping my Mom comfortable in long-term-care, she would be climbing out of bed all day long falling getting hurt each time. The reason for the climbing was because she was in pain as she was only 85 lbs, thus sitting in a geri-recliner or even lying in bed was torture for her.

Taking my Mom [98] home wouldn't have extended her life at all, and I wasn't about to put my Dad [94] seeing my Mom thrashing about. When he visited her in long-term-care, he saw a peaceful person and that was the image I wanted him to remember her final days.
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I commented on this post weeks (months?) ago when it was first posted. It has been a real eye opener, and a cautionary tale.

Hospice killed my aunt. Hospice did not "rush her death"; hospice put her down like a dog. He had had a heart attack and fallen on the floor, breaking her left shoulder, arm, hip and leg. She recovered from the heart attack and they set the hip. However, they told my cousins that they should put her in hospice in the hospital because at 94, her bones "would never heal." (Really?) So they moved her into a private hospital room with a nasty nurse, loaded her up with adivan (sp?) and morphine, and denied her water until 3 days later she died. She was parched, so I gave her water on a swab. The nurse to me not to because it would hurt her "since her organs are shutting down." How the **** were her organs "shutting down" from a few broken bones? A healthy person can only live 3 days without water, so you know when they stop giving the patient water, they're going to die within 3 days. How's that for predictive power? Then they load them up on drugs so they have no clue what's going on. When the kidneys start to fail from no water, they release a substance into the blood causing the person to fall into what they call a "peaceful coma. Yes, they kill people by denying them water when they can drink. I gave a friend of mine on hospice a bottle of water when she was dying of thirst. She was up and talking and drank half the bottle. I was scolded by the nurse for interfering. Now I know what she was talking about!!

That being said, my mother has Alzheimer's. If she reaches the terrible end stages of that disease, I will not hesitate to put her on hospice. At that point, it would be merciful. But I would only put someone on hospice if they are ready and I am ready for them to die in less than a week. That's what this post has taught me, and I thank you all for that.
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Bookluvr, here in CT, all the pcp had to do was get a referral from a third party nurse (vns) and then he made the recommendation to hospice. Then hospice sent their own nurses (evaluation and intake). Took less than three days from my request to the pcp by phone to the final paper signing.

Of course, the pcp was very aware if my mother's circumstances as he has been her pcp for over a decade.
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my mom was admitted to hospice i stayed by her the entire 5 days .i noticed they stopped all her meds and gave her morphine and adivan i noticed a big change in her..she slept more and became weaker and not able to speak much..i told them no more morphine and adivan unless she asked for it..the nurses and argued with me saying it was good to keep her sadated i told them No..they then agreed to stop the meds next 2 days my mom was alert and speaking...i took her home where she wanted to die..she died 4 days later with total organ failure.she just went to sleep with no suffering.i later spoke with a hospice nurse and she advised me the reason they keep them drugged is so they will just go to sleep and pass..if you love someone and they put them in hospice watch out for the drugs they give them every 4 hrs...
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Kellse, you brought up an excellent point. I plan to do the same thing.
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I am thinking about seeing if I can get a health care proxy written with instructions that they gave to follow Hospices recommendations. This really scares me that my daughter could with hold medications to easy pain because they perceive them as ending my life
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Thanks for your post, bookluvr, it makes the burden of dealing with end-of-life through hospice care more acceptable. I am sorry to hear about the struggles your mom and your family went through. At the same time, your post puts the guilt that I have felt for being part of a decision that I know sped up my Dad's death in hospice, in perspective. Sometimes more time is not a good thing and that is hard to process, unless one has been through the kind of situation you have. I appreciate your post and am more appreciative of the painless last few days and peaceful death that my Dad experienced.
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Veronica, you're not a murderer. Beauty is in the eye of the beholder. What one sees as plain, another sees as beautiful. What one sees as junk, another sees as treasure. This is the same with hospice. I'll bet that man in the hospital who kept shouting in pain for hours would have welcomed hospice service to shut him down so that he no longer felt the excruciating pain of cancer. He kept begging for hours for help from the pain. He kept calling out over and over, "Help! Help!" The nurse told us that he has cancer and they cannot give him the painkiller because it must be given at set times. Poor man. He was suffering for hours in pain.

When mom was dying, we couldn't get hospice service. And I can tell you all, that mom was suffering. Every time we tried to turn her, to change her pamper, she cringed in pain. Every morning, she was struggling to breathe. Because of Medicare protocol, in order to have hospice service, mom's doctor would have to see her and recommend it. But, her clinic/insurance does not allow home visits by the doctor. We would have had to put pain-ridden bedridden mom on an ambulance, travel over dirt road in order to get to the main road. and then back. We all decided that mom is so close to the end and we didn't want her to go through needless pain. Mom passed away in her sleep without hospice service.

I tell you this much, it was terrible. Terrible to hear mom every morning struggling to breathe. Terrible to change her clothes/pampers, and seeing her cringe in pain. I would have loved to have had hospice service - for mom. To ease her to a painless death. I still feel bad that we never got hospice service in time to make mom's last moments of life, to be painless. Yeah, I would have been gungho with the meds. Anything that would have made her last days as painless as possible.

Would I feel the same when it's dad's turn? He's not in pain. But if he's close to the end, yes, I would contact hospice service. So far, the home care nurses of Dad's clinic are very nice and friendly. I value their advice and feedbacks.
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Sorry for any punctuation or spelling mistakes . My mind is very tired.
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Hello 126Cher , Thank you for your comment. I'm sorry for your loss. Unfortunately I had no say so in my mothers situation. My sisters kept me in the dark as to what they were doing with hospice. I'm having trouble with that now. It wasn't until the day after my mom died that a friend brought it to my attention. Her memorial was on Saturday and it was extremely difficult that I opt to leave rather then staying. My grief feels it has different parts. My emotions are of my days consist of trying to sort out how my family could have done such a thing in ending my mothers life with the drugs morphine and ativan. My mother battled lived with cancer for 16 years,no chemo and took only the prescribed medication vicodine. She was a very strong spiritual woman. A day before she was given the two lethal drugs she expressed to me when I asked if she was in pain she answered "N0 not anymore then I always have been. Ironically my sister got angry at her for getting up and using the bathroom on her own too. I should have done or said something right at that moment, when I heard the tone in her voice as she sternly said to my mom " IF YOU FALL AND END UP IN THE HOSPITAL, YOUR NOT COMING BACK HERE.It set me back as to how cold she was towards my mother. . I think about that everyday . I don't have any desire to communicate with either of them (sisters) any time soon. As family goes when my mother died my family did too.
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The murderers can not see cruelty because they see normal method of ending life, but no one can know or predict the time of anyone's life . how can they says their give comfort with all these narcotic, morphine, lorazepam, haloperidol, bisac-eva, cp prochlorper, cp hyocyam. Just remember no body can take anybody's life, what goes around comes around.
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You know I am really really tired of being referred to as a "murderer' on this thread.

I am a retired hospice RN and my only goal was to bring comfort and peace at the end of life.
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In my experience on February 2014 my father was predicted six month of life, the doctor wanted to send to hospice. I refuse the idea, so I brought home. Please don't let the destiny of your loved ones in the hands of the hospice. If the doctor says six months of life the hospice will kill them in less than two weeks. On February 2016, again the doctor sent the hospice to my house and brought a small box with morphine, lorazepam, haloperidol, bisac-eva, cp prochlorper, cp hyocyam. As soone as I saw the box I knew it was bad news. I searched and found out that it will not help my father. The nurse insisted to medicate him, but I refused because he wasn't in pain. Plus, my father said that the medication is used to kill the elderly. So, for the second time we saved my father's life.
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freqflyer, each case is different. And there are tells. For example shaking, shifting, grimacing, etc. In my mother's case, I can definitely tell when she is not feeling well or in pain. I believe this is because of the Lion's Mane mushroom extract I have been giving her (for a very long time, actually). Without this extract, she withdraws completely. Because she can still somewhat interact, I can read her tells for pain and discomfort. Thanks for the reminder, though.
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If one has a love one who has late stage Alzheimer's/Dementia, please note that the person may not be able to communicate that they are in pain. One has to do what is best for the patient, not for his/herself.

I know I wouldn't want to be that patient, who is in pain, who has no memory left, just a shell, let me go with dignity and comfort. Even if it was possible for me to live another month.... for what? The same discussion among the family would still be there.
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Such a difficult topic and so many different experiences. I have posted before about my own conflicts regarding my father's death in hospice and my feelings of guilt that he passed so quickly (6 days) when we thought he had 3 to 6 months. It was more confusing when my son and some of my Dad's friends visited him on Sunday and thought he looked fine as he talked about the things he wanted to do before he died. Yet, a day later, after a night of what someone on the board called "terminal agitation" we decided to heavily sedate him and he passed away 2 days later. He was and had been in pain and there was little that could be done with the various cocktails he received, to make him both comfortable and lucid. He had been in pain for some time and had been dealing with it stoically. I have not shared my feelings with my mother, who had been with him on several occasions where he was "out of his mind" due to the pain meds, and finally when he had a nightmarish night of agitation. I was comforted this week when my mother began talking about a few situations she knew of where spouses lingered on for months in pain and the effects that had on the families. She told me that she felt we were so lucky that he passed quickly in hospice care and was out of pain those last few days and didn't linger in an agitated and painful withering state. I am trying to reassess my feelings about this. I know that it is never OK to lose someone you love and death usually come too soon for those who remain. However, I am soothed by the thoughts of my mother, who was on the front line with my Dad, and who is at peace and is grateful for the comfort care he received.
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I've already been told there is little chance she will be graduated as she id shiwing real and measurable decline, pasalire. I guess we'll see.
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PCVS, Neither The Connecticut Hospice has been marvelous. Every hospice use the same method, Morphin, lorazepam. If your mother is going to have six month evaluation pure soon they are going to tell you she is going to graduate from the program. The politic of the silence murders, they doing that to cover the murders.
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I don't have to keep her off anything. My mother is not in any constant pain. The underlying condition is Alzheimers. I've been caring for her for 10 years while the affluction progresses. Hospice is, by modern definition, end of life care. At this point, my mother could simply die in her sleep. She is very frail, does not eat or drink as much as a healing person, but neither is she wanting much food or drink. I let her set the pace, though I wish she would swallow more readily.
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Hi PCVS, I agree with what you have said above. The key is to keep them off of painkillers or at least use some other type of painkillers and not that comfort pack that hospice orders. Combination of those drug makes it so you can not eat, drink or move. Your sodium goes up with your potassium which causes horrible cramps that your love one can not even tell you about because they can not talk or move anymore. See that your Mother is 90 from your profile. What underlying condition does she have that she is on hospice other than being old. Dad was 90 when he died in a facility and not in pain but they decided to give him morphine and Ativan anyway because he wanted to use the bathroom himself. He did have liver cancer from hepatitis C he got from a blood transfusion in 1969. Yes it took that long for the virus to destroy his liver. BUT he was not in pain. Went into comma within 48 hours after the drugs. So good you are keeping your Mom off of morphine and Ativan. I did not know any better but now I do.
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Not all hospice providers are of equal quality. So far, The Connecticut Hospice has been marvelous. My mother is due her six minth re-evaluation any day now. She is happy and confortable without painkillers so far as nature takes its course. Remember, hospice is end of life care. Not everyone is ready for this. Not everyone is ready to stand by and let nature take its course. As a species, like every other species, we are not designed to acceot death, but rather to fight it off.

But like everything else in the Universe, we each will cease to exist at some point. It's the tragedy of existance.
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I said this before. hospitals are made for procedures. It wasn't always that way. If you refuse procedures they try to put you on hospice. If you are not a cash crop for the doctors they are done with you.
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We just celebrated my husband 78 birthday on 4/24/2016. He is battling stage 4 colon cancer since 2014 without pain. On Monday 4/25/2016, he fell in our kitchen. That fall cause him excruciating lower back pain. We call 911. They took him to emergency. They x-ray his back and said there is no fraction nor broken bone. They keep him in for observation over night and give him norco, morphine,zofran and restoril. The following day they he was less alert. They discuss a pasemaker. My husband refused because he does not have a history heart problem. They refer him to in home hospice because my husband did not want to go to a nursing home. Hospice then give us a comfort pack, containing morphine sulfate, methadone and many other drugs to control his back pain, and instructed me to administered it. I watch my husband behavior change. He was always sleeping, when he wake up he started to hallucinating, sweating, and i saw his breathing became shallow. I call the nurse several times and complaint that I think the morphine and the methadone is causing my husband more distress. I told her we don,t want him on those drugs. Had I not speak-up my husband would have died because of the drugs they want us to give him. My husband and I revoke hospice. I do believe that some hospice bring on death faster. Especially with our elderly family members. So Sad.
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My mothers funeral is this coming saturday. My sisters wanted some pictures of my mother and I together but I said I didn't want to be in their colaug . I've decide to paint a portrait of us when my mother would take us to the resovoir . Those were memories I will keep in ,my head forever . I don't know if they'll allow me to take it but im gonna try. These days are getting harder the closer it gets to her memorial. I still find it hard to believe she's really gone. Everything reminds me of her. The weather, especially. She enjoyed every season. I remember when she lived with me in my first apartment with my daughter and I we get up in the middle of the night and sit by the patio door looking out and watching it rain. I find comfort in rekindling the times we shared. I miss her.
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I feel very guilty for giving the Morphine and Ativan to my mother before she passed away. She was still alert and agitated a little when they began the two meds. As soon as they began giving her the medicine, she was out of her mind and didn't know any of us again. They had me give it to her every hour and every time I did, I felt like I was killing her and I still feel that way. My opinion is no family member should have to be responsible for administering the drugs. It scars you for life! She passed away in less than a week. Before she was put on the morphine, she was having a dream that kids were burning in a truck and she was scared to death. I feel so guilty because she went from being scared to being in a coma and never got to make her peace with God. I know she wasn't ready to die because she told me so. The Morphine was started before I got there and I think Ativan would have calmed her from the dream. Mixing the two drugs is lethal and I will never forgive myself for giving it to her.
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I think that nine times out of ten end of life care seems to be exemplary, but those other poor souls and their families who must endure callous treatment of their concerns and total lack of support in their final days and hours just make my blood boil! I can only pray that when our time comes we don't end up with the abominable minority.
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T99rouble. I am so, so sorry to read your account of the care - care? - your mother received. All I can say is that your handling of it, in circumstances so challenging, and your response to it by getting involved in ltc ombudsmanship… well, I take my hat off to you. You are an example.

And I hope that Medicare eventually kicks someone all round the room.
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I have experienced the end of a loved ones life three times while they were on hospice. Both of my grandmothers had hospice care, and now recently my mother.
I can't praise the people that cared for my grandmothers enough, but the hospice that provided care for my mother is criminal. First, they refused my repeated requests that my mother's own physician direct my mother's care, which according to medicare, is a patients right. The day my mother came home from the hospital, the hospice nurse to me to give my mother morphine every two hours, which I refused to do. I felt that giving it that often would prevent her from being aware of anything and hasten her death. She wasn't suffering a lot of pain for the most part. My mother had been on hospice for a month when she became severely constipated. The coordinating nurse came out Sunday night and administered 2 enemas. Monday I assumed the regular nurse would follow up because my mother had a bowel resection just before she was diagnosed terminal and constipation posed a particular threat to her. The nurse said she had been briefed and did nothing to address the issue. Wednesday I called to the hospice twice with my mother's screams in the background. A laxative was ordered and delivered by mail. Over Thursday and Friday a friend and I removed a MASSIVE bowel obstruction with q tips in shifts, according to my mother's tolerance. It was seven days between the nurse's visits and I was so angry that I told her "If I have another problem like this, I won't be the only one with a problem." It was a very unpleasant job, but I felt that if she were unwilling to do what was necessary, she should have at least advised me how to proceed since I am no trained medical professional and I could have hurt my mom in my ignorance. I also told her that if she hadn't recognized the seriousness of my mother's condition, she was not qualified for her position and if she had and ignored it, it was even worse. Hospice had attended my mother about two and a half hours weekly. At this point, hospice started providing about twenty minutes of care, consisting of taking my mother's vitals twice a week. I was so disgusted, I didn't care, and enlisted friends to help me provide for my mother's care. When my mother became agitated in the middle of the night and I couldn't keep her oxygen levels up, I called hospice @ 3am. When the nurse arrived @5:30 my mother experienced some sort of seizure. The nurse said she felt my mother might be in the process of dying, and left. I frantically tried to comfort my mother until @ 9 am when I called hospice and said if someone didn't come I was calling an ambulance. They showed up, gave my mother something and she never spoke or had a light of consciousness in her eyes again. As rotten as I felt their care was, I do not fault them for rushing my mother's end. I feel it was done to ease the inevitable. If you have any quality of care issues you want to report to medicare, I'm afraid they use the honor system to investigate complaints. It's been a year and I directed my energy into a more positive avenue by volunteering as a long term care ombudsman. Unfortunately, conflict of interest won't let me involve myself with that particular provider. Darn!
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Thank you for your comment however there were other factors involved that my family were involved in prior to my mothers death where she was treated unfairly. My family acted with the help from Hospice in a very selfish way. To my sister and her family my mother was a burden and made it clear to her they felt this way. There comments and gestures hurt. I know this because when she came to visit she confided in me but asked me not to say anything afraid it would make matters worst. She was never happy to go back home where she lived with them. My other sister which also was involved had resentment towards my mother from the past that showed in her lack of interest in caring and simply spending time with her. She lacked enthusiasm in assisting me when my mother was left at our home and gave little thought to what my mothers needs were . They took away my mothers right to stay alive and die naturally for their own selfish reasons . She was walking , talking, eating, and could get up to use the bathroom and shower. She had no more pain as she expressed to me anymore then what she had before. They never informed of the process they were going to take . I stood in the dark because they kept me there, I was deceived because they knew I would never agree to it and would clarify to my mother what was happening. So as family goes.. I have no desire to ever spend a moment ever again with any of them.Would you want to hang on to family like that?
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Sorry...I meant to say "discussions without accusing" above....
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