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I keep hoping this thread will run its course, but it just keeps on going............I have some questions for all those who have bad experiences with hospice....

What is your alternative? Hospice should be against the law? No morphine , no way no how? How should the terminally ill die? Should we ignore a person's end of life directives because we don't agree?

Im not interested in any more horror stories about hospice murdering people. You've all made your point. I Sympathise with all who have lost loved ones. I am no stranger to death in my own family. But it's time to put up or shut up. If not hospice, what then?
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Windy .. I daresay that if this discussion disturbs you, you might want to stop reading the thread, it seems painful for you. Instead ... start another one, with your question? I think it's a valid one and deserves some answers. I also think that people need to vent and share their experiences.

LadeeC
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I am very sad to see this become a forum where people come to reinforce the belief they need to have, for reasons I personally do not totally understand, that their loved one was murdered rather than died of their condition. Horselady, I know you said you won't be back but I am writing anyways - please pick up that phone and talk to the hospice people. You are setting youself up for total estrangement from your whole family and for bitterness that does not need to be. Saline is not a drug. You are guessing by volume of an infusion - which could have been at a different concentration - that more was given than you gave and you do not even know for sure what was given. You would need to know how many milligrams, not how many mls. She had no urine output but because you did not see skin mottling you are assuming that meant you had more time - not necessarily true!! Please, don't be another case in point about how human beings can take a bad situation, no matter how bad, and make it worse. If you find out for sure that something was done wrongly - I will be behind you in pursuing it 100%- I think all of us will be! I am personally totally against euthanasia and assisted suicide for all the reasons you state and then some. I know this is a horrendous time for you, you wanted and needed more time to adjust and accept the inevitable, but don't let the overwhelming emotions lead you into permanent regret and fixation on something that may not have happened, at least not the way you percevied it. I don't know how to say this - I don't blame you or want you to feel bad - I just want people to be able to save the anger for the situations where it can be used for positive change, directed against its rightful targets, not as a thing to be held onto despite any evidence to the contrary and end up poisoning you and yours.
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Laden, I find this discussion neither painful or disturbing, only a bit tedious. Over 500 posts, most of which are about the same: hospice is horrible and kills people too soon. I agree that people need to vent, I've done my share on this forum, but we can also disagree. So with 500 posts and counting that hospice is bad, does anyone have a better idea?

I would think if hospice was on the murdering rampage suggested by many on this thread there would be lots of press, congressional investigations, high profile lawsuits and right wing politicians making hay and passing bills left and right to shut down hospice just as they are with planned parenthood.
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Ladee......opps
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What's interesting is that hospice ONLY steps in when either the patient or his designated or legal representative agrees. It's not mandatory. It's pushed on NO ONE. If the person themselves asked for hospice, they knew exactly what that meant...or family should have explained it. If their representative elected hospice without knowing they were going to help their loved one die peacefully? Well, shame on THEM.

All these guilty consciences need counseling.
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Amen, Maggie.
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VStefans, Windy, Maggie, Babalou and anyone else who's posted similar thoughts in the past - I totally agree.

This thread has dragged on and on and on and has become very rhetorical. Complaints and innuendos have become the dominant theme.

If these folks are suffering, as Maggie puts it, "guilty consciences", then they either need to seek therapy, find some way of addressing their guilt, and learn to move on. Complaining ad infinitum (or rather ad nauseum) or attempting to shift blame isn't solving their problems.

While I understand that hospice can be for respite on some occasions, it is primarily for end of life care.

If they feel there was negligence, then get the hospice records, have them reviewed by a malpractice attorney, or contact law enforcement. Or, just "ferme les bouches" (shut your mouths). Don't just keep on bitching. It doesn't solve anything, any more than spinning the wheels of a car stuck on ice. You don't go forward or backward; you just keep spinning.
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I have clicked to "unfollow" this thread numerous times, but somehow I just keep getting sucked back in. Perhaps it is the part of me that makes me a caregiver, I want to help these poor folks that are so obviously in pain. I also feel compelled to add some balance for new readers to consider. But I agree, the endless re-hashing of the same statements is tiring.
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I don't mind the bitching, or the hand-wringing, or to put it more charitably the unresolved mourning. It's the recruiting that bothers me. Otherwise I would sadly leave them to it, having given up trying to help.
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Exactly, CountryMouse. How many readers have begun to second guess their own decisions because of this thread.?

Not a one, I hope.
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I once had the privilege of helping someone review records to understand why they lost a beloved younger sibling, and I was grateful to be able to help in that way in a case where we really could not do that much else. So, I want to offer again, however we could arrange to do it, if someone does get records and wants me to, I would review and interpret them with you/for you. I feel terrible because I know the answer to the original question could very well be yes in some cases, though for the most part, care providers are not evil profiteers trying to harm people and families. In my experience, for every time a provider actually does something incorrect or bad, there are at least a dozen times they have been misunderstood instead.

That would be informal as I am not a geriatric or hospice expert by any means, but I am fluent in medicalese and its translation to English.
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I have commented on this thread a couple of times...and all I wanted to say, probably repeating myself that our Hospice team has been invaluable to me as a 24/7 caregiver, caring for my Mama alone. They have provided not only palliative care for Mama but comfort for her and for me. At no time have they ever made me feel that anything was being forced on me and when different courses of action were thought to be necessary, they always talked WITH me and not TO me, and helped me make the best decision for Mama. I am blessed in that my Mama is still with me, but I do understand that so many times, anytime we lose our LO's, there is a human tendency to feel that we should have done more, could have done more, what if this, what if that...and all of it is so often associated with those horrible phases of grief in losing our LO....

I totally understand all the questioning, worrying and living in that grief, but ultimately, I think in most cases, there is simply nothing that could have been done that would have kept our LO with us...sometimes it is just harder to accept for some people....

I can't imagine that our Hospice provider would ever do anything to lessen the amount of time I have with Mama...their goal has always been and continues to be her comfort and care...and helping me feel less alone through it all.
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If anyone is interested, and has access to the BBC Radio website, at midday UK time Tuesday on Radio 4 there is to be a discussion on end-of-life care as part of the You & Yours programme - you might be able to download it at a more civilised time of day later on. Their participants are usually quite lively so I'm hoping there'll be some constructive exchanges.
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The concept of hospice seems like a good one. As I understood it, when hope was running out, it was a solution that could provide your loved one with a more peaceful, calmer way to die. We had a family meeting with the hospital hospice coordinator. It was a new program for their hospital. She told me my brother was very ill and that they thought this was the best solution. He was an alcoholic who had very limited insurance and had been battling a severe stomach infection that we hadn't known about. She told me to my face that sometimes people get better when they get away from all of the hospital machines and that he would still get fed through the feeding tube and would receive his treatment for the infection. At the same time a hospital representative had called my older brother in Dallas and said we had to do something or they would deliver our sick brother in his hospital bed to my mother's front yard at her house and it would be our problem then. What were we (I) going to do? I didn't have the resources to take care of him. I am a teacher and we had a daughter in college. I had my mother hospitalized at Methodist downtown with heart issues. But had I known that I would end up sitting there watching them starve my brother to death. Not allow him to have any fluids. See him reaching toward the sink and looking at me like "help me." Right in front of me. I would have done something else. The experience we had was never what I had always heard about hospice. What makes the situation even more heart breaking is that within a year, doctors developed a new treatment program for the stomach infection that probably would have saved his life. And then something similar happened within a year and a half to my younger sister. Same hospital. I think there needs to be some kind of protection for patients and families. I don't want to sue anyone. I just want my brother and my sister back. But maybe if we had made trouble, maybe my sister would have had a better experience and at least she would have survived. But let me be very clear - I was lied to. Unfortunately, when someone is dying we are too polite. I watched my older brother and my sister and thought maybe I was mistaken, didn't understand something. I wish I had fought. Screamed. Insisted on trying something else. I just never thought he would really go. And I was so tired by that point. While hospice is a good idea, I still believe we need to ask ourselves some tough questions about it.
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Deb, IMHO, denying someone nutrition when they are hungry and want it is not hospice but euthanasia. The only common excuse for not allowing fluids **by mouth** is risk of aspiration pneumonia, and maybe if a GI condition such as pancreatitis or an intestinal obstruction would be aggravated but then you need to give them some other way unless the person is not thirsty and mild dehydration is going to let them be more comfortable with fewer secretions. Sips or drinks of water can typically be given as part of a "Frazier Protocol" in any event with few exceptions in cases of aspiration. You were lied to about the threat of delivering him to the front yard when he could not be cared for too. It is hard to question people who act like they know what they are doing, and you are just unspeakably and irrationally out of line to question them...some places that is the health culture to form that sort of "united front" and intimidate people into doing what they are most comfortable doing, usually some kind of a cookie-cutter approach to it all, instead of working with people individually. Just my $0.02 not knowing any other details, and very sorry this happened to you and your family.
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Dear debinhouston: So sad to hear about your brother's situation. Did we have a basic human rights? If you are sick they can not throw you out of the hospital. This country needs to take care their own people before they throw away millions of dollar in helping other country. This is just very sad to know the hospital is going to deliver him on his hospital bed to your mother's front yard, so cruel and so in humane. I like to see and believe this country people has a decent heart to take care and to treat the elder and the sick ones. Am I been naive.
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Oh how awful Deb...that is such an awful thing to have had to go through...Sometimes I wonder if I have gotten the way I have because of all the things that transpired through Mama's ordeal..and all of my family members have pretty much disappeared....not that any of them ever appeared in the first place....but I know how hard it is when you have what seems an entire hospital staff trying to intimidate you and it is a time when you feel so worn out and weary anyway.....I think I finally got so weary I just didn't care anymore what I said or did and the last time a hospital tried to put my Mama out, and she still had pneumonia...I started screaming at them and I told them I was about to lay my A$$ down in the hall and have a fit for all the floor to hear if they even tried it ....they looked a little shocked....even told me they would call the police...I told them go ahead and do it and I would go on right now and lay my butt down and start ....they never bothered Mama or me again.....but how sad that we literally sometimes have to practically threaten someone to get them to care for our LO....it's not right....I'm so sorry
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To Rosie,
I believe 100% that hospice rushes death. My mother had a kidney that was nicked during a biopsy. She was bleeding internally. The bleeding had stopped at the hospital, and she had been given 10 pints of blood. However, the internal bleeding pooled in-between her cavities and organs. We did a cat scan 7 days into the hospital and it had started to shrink. However, she got a case of ild pneumonia , and had been struggling with congestive heart failure, and myleolukemia for about a year. She had just come to visit me out of state the month before the biopsy, and was getting around just fine. So the blood cancer was not affecting her that badly yet. She had 3 heart attacks over the years, but was one tough cookie. As I said, she had just visited me a month prior to the biopsy. At the hospital, she was in so much pain, that the doctor had a meeting with all the family. We just wanted her out of the pain from the biopsy, and more comfortable while she could get a chance for her body to fight the kidney healing on its own. The pneumonia was mild as I said. We had no idea that when she was taken to hospice to get more "comfortable" that she would not be speaking anymore as of that night. She had been waking up off and on just fine in the hospital, but in pain. The night before transfer to hospice, my son had stayed in her room with her joking all night when she'd wake up. She was in high spirits, but when the pain kicked in, it was horrible. We opted for the hospice, thinking it would focus on her pain, and with the pain relived a bit, along with the stress that comes with that, her body might start to heal. No. First night, she was out on the meds. When I told the nurse around 4 A.M the next morning that I was in shock that the meds were so heavy she could not talk anymore, she said they were making her "comfortable". I went outside to grieve. The nurse came out and said (coincidence) she's awake come talk to her. When I did, my mother knew, and said this was it, and that it was so hard. We got about one hour, that I will forever be grateful for to talk, then they came in and gave her the meds. She was out. She died the next morning. She never woke up again. My daughter jumped a plane, that is only a one hour flight, and I could tell she wouldn't even be able to talk to her grandmother again. My mother couldn't talk, but they said she could hear, so I put the phone to my moms ear as my daughter was boarding her plane. She died 20 seconds later. This all happened over a day and a half. I'm heartbroken. Hospice nursing staff were exceptional to her, but yes, they take them down, and fast.
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I feel your pain. It sounds similar to what I went through with my dad. I only wish that I had MADE the nurse postpone the pain meds so that I could talk to him one more time. They were insistent on "keeping him him comfortable". My daughter held his hand and he responded to her slightly squeezing it without opening his eyes. I did not know that he could hear what people around him were saying until later. He opened his eyes only once when his great granddaughter said "I love you Great Papa" and he opened his eyes and said "baby!" and fell back into his medicated sleep state of morphine and Ativan! He died a few hours later when they kept going up on the strength of the meds. later. I was such a mess!
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PBfordad, I went through the same thing and I agree with you 100% They also gave my dad adivan too much of a dose and when I told them NO morphine they did it anyway the next day and I lost him. Thank God I had the priviledge of getting the whole day to say how much I loved my dad and yes, hearing is the last thing to go so he heard every word of how much you all loved him and my dad heard it too. I HATE hospice! And I was and still am a mess!
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It does not make any sense when the family says the patient has a bad reaction to a sedative or staff know that the sedative will harm someone because of their age why on earth is it given.Then another insane thing that is done is why on earth is a sedative given when it is not even needed. When the family is there or when the person is in the hospital trying to recover from a sedative overdose already that the staff gave them before. than they are given more. How can the staff take a healthy elder person and then continue to harm the already over dosed patient with more deadly sedatives. I'm talking about this happening in the hospital and then hospice finishes the person.Maybe when things like this happen one can only assume that murder is involved. What else can it be. I have tried to come up with every scenario possible but have yet to come up with anything that did not involve murder. It would be the same if a person driving down the street saw a pedestrian and did not feel like stopping and hit the pedestrian rather than a person driving down the street and was not able to stop in time. the staff that dealt with my mom did not want to stop at all leave alone stop before they killed her. They just kept going until she was gone.
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Watching my beloved MIL die while in a hospice program was so painful I felt like i needed morphine and Ativan to get thru it. Without going into a long tirade I will say hospice programs and providers have their place altho I think perhaps their practices should evolve and improve over time as most things do. Not everyone on hospice has metastatic cancer. Not every condition is necessarily excruciatingly painful as was our family's case. So to watch your loved one instantly fall into that stupor is unsettling to say the least. Sitting at their bedside for eight long days and nights while waiting for the drugs to do their job was almost unbearable. I was there holding her hand when she briefly opened her eyes and tried to speak but was unable. I saw the fear and confusion on her face and the tear run down her cheek when I swabbed her mouth. The last few days there was no apparent awareness on her part at all so I pray the drugs did eventually comfort her as she seemed to pass peacefully in the end. More than hospice hastening her death (which they absolutely did but i understand that's what they do, and not necessarily intentionally) I rather felt like she was not quite ready and their protocol was perhaps started too soon etc. My husband and his brother have some mixed feelings about some of the decisions their sister made but that's more a topic for a different thread than a bash against hospice.
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I am a hospice pharmacist and we do not put someone on routine around-the-clock morphine and Ativan unless their pain is severe and their end-of-life anxiety/distress warrants this. I work for a large hospice facility and some of our patients have been on hospice for years (they are recertified every 6 months). Please consider that your loved one would have been in pain or anxiety without the use of these medications. Hospice does not hasten the inevitable. The RN carefully evaluate the need for these meds and they are truly experts in their field. Every prescription including the scheduling is reviewed by either a doctor or a pharmacist with prescriptive licensure. Hope this helps with the grieving and comforts you all that have lost loved ones. Hospice and Palliative care have been shown to extend the life of patients (see PubMed for scientific articles).
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There are even hospital docs and nurses who give these sedatives even if the patient is not needing it and even if the patient cant have it cause of a reaction or it is a danger because of their age.Our mom was out cold from an ativan overdose and the nurse was yelling out dnr and ativan at the same time. Overdosing her cause the staff would not start her heart after it stopped from the overdose because of the the dnr that she had.She had a good life before the medical staff got a hold of her that severely drugged her.
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I am afraid hospice is used to save doctors. This is about morphine overkill and hospice. My father is 60 and has had cancer for 10 years. He's at home with "end of life palitave hospice care" that I do not think he needs...They (a learning hospital) collapsed his veins so he needs hospice for the picline they put in him for dehydrating electrolytes (nutrition bags not approved by doctors despite my concern) and now for a physical dependence on morphine which ruined his hygene. He has basically 4 feet of small intestine left and the stoma has a fungal...shall we say...outbreak and the pic line site has it too and he needs these rescue doses of liquid M.S. mostly every night aside from being on it all day on 3mg that I was not ready for. (no doctor talked to me just a bunch of protocols from hospice nurses). Simply put if they do not know the law they shouldnt be overriding my authority (like cutting out his intestines and giving him a stoma because well "inflammation") and they say he has colon cancer which they didnt touch and now liver spots. The pump safety shut off valve (these things are a joke) was overridden and he had a stroke on it while at oncology prior to hospice. Every time I describe something as a "condition" they renegotiate the term with "symptom" The surgery was a good thing but it metastisized into liver and a few catheters have hit his nerves recently and over the years (no big deal). The rest of it is overkill to be frank. They send him things he doesnt need like needle caps....hundreds of needle caps...One doctor berates me after being confused why I want him "revived". with "why do you want treatment but are refusing it" (does he mean chemo?) I could barely understand him and he seemed ticked. (I never dialed 911 in the first place) He needs medication/painkiller/something (not morphine) that is more bioavailable and readily absorbed by the liver and colon to heal it so can can get a stoma reversed and stop dehydrating/starving to death...But now I cant get him off morphine or get him to wash or bath (was bathing before morphine) and am afraid he will die of a stroke, heart failure, kidney failure etc..I am afraid he is starving to death but he eats nothing but indoor grown vegetables, oils, fruits, cheese, sodium chloride and turkey bacon/crumble. He is in alot of pain right now and trying to sleep and I know something that works better than morphine for pain and cancer but I am treated like a fool when I mention it because well morphine is so good. Why did they send him 100's of needle caps?
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Jingalingaling, did/does your father wish to be on hospice? It is not mandatory, you know.
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Jingalingaling: Cancer patient I agree to give them morphine to comfort them. My mom has kidney cancer and spread to her bone, she was in great pain, I rather let her go then seeing her in pain, after morphine she was hardly awake and what a point keep her alive? She either in great pain or get knock out by the morphine. But with my Dad's case he has a stroke from his fall two weeks later, the doctor was aware he has a stroke, he passed out we sent him to Emergency Room, the internal medicine doctor said he just has his diabetes shock, I was the one insist to check and see he has a heme. stroke at that time I have a 84 years old friend has a heme. stroke that is all I know about stroke, they took a scan they told me he doesn't have a stroke and send us home. A week later he can not talk and his right side of his chin drop and none of us know he is having an ishemic stroke. We send him back to the hospital and I insist the hospital to tube feeding him, I don't want my dad to have the same experience like my mom, before she died she started vomitting with blood because there were no food in her stomach for so long. The doctor gave him 24/7 tube feeding I question the reason 24/7 and she said the doctor wants his stomach full all the time so the blood will go up to his brain I believe this is a wrong reason to feed the patient 24/7. My girl friend suggest me to request the nurse to sit him up periodically so his lung will get some excercises so the lung is important too. The nurse replied they have to request a special equipment to pull him up and sit him up on the chair, and the equipment will arrive Tuesday. At Monday night 1:00am the 911 report stated the nurse went and adjust his feeding tube, by 3:00am they have to call 911 to send him back to the hospital from the nursing home. I requested the Medical Records from the nursing home they are very sensitive about why I need their Medical Records and took them 5 months to give it to me, and the hospital only took them 3 days to give me the full medical records, that make me doubt about the motivation of that nurse went into my father's room adjust the feeding tube on purpose? They have been telling me all day on Sunday your father is dying, do you know that? I told her please do not talk about my father like that, he may be 100 years old but he is a very strong man. He has a big fall and none of us aware there is a stroke will come after two weeks even the doctor at the hospital did not forseen that and send us home. Now they decided to overdose my father with morphine so called comfort care and let him go because the food got to his lung? And he was breathing on his own without help for three days. I doubt seriously whether his death is a wrongful death by overdose him with morphine.
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Hospice killed my father. He had an attorney appointed guardian for 3 years, then I (daughter) was appointed interim guardian (about 2 months before he died) until a hearing could take place. I tried to reduce drugs dosages and remove some of the harmful drugs they had him on. Hospice bullied me untill I was backed into a corner. When I held my ground, they reported me to Adult Protective Services and the probate court who ordered him back on hospice. This was Heartland Hospice; and the assisted living where my father lived sided with hospice b/c they wanted Dad to stay there to collect his money. I believe Hospice and the nurses at the assisted living gave him lethal doses of Ativan and Morphine. He died 2 weeks later.
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Hello everyone I lost my wife due to liver cancer in February 2013 and she was a fighter!!! When her daughter put her in a nursing home she went down(depressed) nt eating sleep alot she hadn't had the morphine yet she was taking other pain meds at the time and they weren't even strong enough to put her in a coma or make her nt eat! She didn't really want to be bothered which I can understand but PLEASE PAY ATTENTION WHAT I AM SAYING!!!! GOD is GOOD ALL THE TIME!!!! I stop working so she could come home and I took care of her alone with the hospic nurse! When she came home my wife after 2 days starting eating getting up out of bed talking and laughing with her family and friends! She even dance with me!!! Her friends came over and she slow dance with one of her best friend (even though she was nt feeling her best she tried)!!! This was in December early January I would say!! She didn't need her morphine just yet she was taking perks nt even her ativan! Thank you GOD AND JESUS!!! My wife was a retired nurse and full of life a people person who loved helping others!!! We were a gay married couple and it wasn't legal here in Indpls yet because if it was she would have never been in a nursing home PERIOD!!!! she didn't deserve that and her evil daughter and son did her wrong!!!!! KARMA DO I NEED TO SAY MORE!!! Moving...right alone....my wife told me that she here wanting to eat was going away. ...and slowly she stop but she still.wanted her ice cream and berry blend juice which she called it her sluggish eee :) because that's how she like it! Then she started needing the morphine 0.5mg and ativan the nurse could not believe that she lasted as long as she did plus nt needing the morphine or ativan until the last 2wks! (NEVER GIVE UP ON YOUR FAITH OR YOUR LOVE ONES) then she started nt wanting to drink and without warning she went into a coma and that lasted for about a week then one night she started breathing funny and I knew that she was going to be with the LORD!!! I THANK GOD FOR GUIDENCE AND HAVING THE NURSE, HER OLDEST CHILD, AND FRIENDS THERE WITH HER AND I!!! GOD DOESN'T MAKE MISTAKES!!! GOD IS AWESOME AND MORE THEN WORTHY TO BE PRAISE AMEN!!!! I MISS HER AND LOVE HER SOOOO MUCH!!!! IT COULD HAVE BEEN ALOT WORSE BUT GOD MERCEY AND GRACE IS BEYOND AWESOME AND HE SAID THAT HE WON'T PUT NO MORE ON US THEN WE CAN HANDLE!!!! I FEEL THAT HE WOULD NOT BRING US TO IT IF WE COULDN'T GET THREW IT!!! GOD BLESS YOU ALL AND FEEL FREE TO ASK ME ANYTHING OR IF YOU NEED SOMEBODY TO TALK TO HIT ME!!! #NEVER STOP PRAYING#NEVER GIVE UP#HAVE YOUR LOVE ONES AT HOME!!!#TAKE CARE OF THEM!!!#GOD IS BEYOND AWESOME!!!!#KEEP THE FAITH!!!#FAMILY AND FRIENDS!!!!
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