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Debbie i am so sorry you lost your sister to such a horrible disease. Your sisters last days are typical of the way glioblastoma kills. After the initial diagnosis things seem reasonablt tolerable for a while but when the real decline begins it is very fast. Hospice did all the right things to relieve her agony and make her passing more peaceful. Sudden withdrawal from high doses of steroids is a very bad situation but there was no option in your sisters case when she could not longer take them by mouth. they are not a pleasant drug to take and do cause a lot of acid reflux so many terminal patients plead for them to be stopped. Hospice should have a grief counciler and often support gruops. you can use their services free of charge for 13 months following the death of a loved one. People from the community who have lost a loved one and not had a conection with hospice are also welcome to use this service. I hope you are able to find comfort from this tradgedy and your nephew is able to recieve the help he needs.
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Debbie, my sincere condolences.
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We were very close, I was her primary caregiver. She was the baby of the family. She was the 3rd sibling I lost in 5 years. There are only 3 of us left now. I wasn't as close to the other brother and sister who passed. She was so different for me. I was with her the final two days most if the time. It was horrific to see. I wasn't with her when she passed.
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Debbie, I don't know if you've ever had to take steroids, but when I've taken them I felt horrible and had a mood 100x worse. The brain swelling which caused the seizures would only have gotten worse, meaning higher doses of steroids would be necessary until they were at fatal levels. To be out of the misery of taking steroids was a blessing to your sis I am sure, for however long she was able to experience that. The Ativan helped her not be scared and anxious. You were right to give her that boost off the steroids and let her know you loved her that much. You two must have been very close. I am so sorry you lost her to evil cancer.
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Debbie, it was cancer that killed your sister. Grief counseling sounds like it might be a good step for you to take, so that others can help you move to a better understanding of what has happened.
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My sister passed away on Jan 7 from glioblastoma (brain cancer) she was diagnosed Feb. 7 2014. She had surgery, radiation and chemo. On Oct 23 2014 she had another surgery because the cancer recurred. She seemed fine until she had the 2nd surgery on Nov 12, 2014.It was all downhill after that. She lost her vision and fluid began to build up in her brain. On Dec 29 she had a seizure with asphia for a little bill. We met with the doctors and they said the only thing keeping g her alive were the steroids. They suggested. Hospice. We had her transfered the next day to an inpatient facility. She was conscious, talking and eating and drinking. She didn't know what she was talking about. The nurse gave her Ativan. That was the last time we saw a response from her. She died 2 days later. The nurses were great, she was comfortable and in no pain, but I still wonder why so fast. She had just turned 53 2 weeks before she died.She leaves behind an 18 year old autistic son. I'm thinking I need some grief counselling because I was the one that pushed hospice. Would she still be alive if we continued her meds? Just having a hard time with this
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My husband suffered from Alzheimer's for 8 years. Five days before he died he had a seizure and fell down the steps, severely injuring himself. Walking had been the very last thing he could do. He was given 2 mg of Ativan in the ambulance. They gave him 4 more mg in the CT scan room without my knowledge. I would have never allowed it. I had POA. He had to be brought home in an ambulance and carried upstairs because they said they couldn't do any more for him. Hospice came in and gave the end of life meds. We are all torn between wanting them with us and letting them go when the time comes. Why fault Hospice? If they aided in my husband's passing, God bless 'em. I had laid awake many nights praying for God to take him peacefully and painlessly. They helped answer that prayer.
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Hilary, When you were little, didn't your mom love you so much that she would keep you from seeing the reality of war, the brutality of murder, and similar horrors? By her passing while you were gone, she was again protecting you from seeing the finality of death. She would not want you to forgive yourself for anything since you did nothing wrong. She would want you to see that she is free from pain and the constraints of this world. You were not expecting this, but she was obviously ready to go. Many will delay leaving until loved ones are away if they are trying to protect them. Your mom knew when you were there and she left in as loving way as possible. Please contact the grief counselors at Hospice and I am sure they will be able to show you resources which will help! Many hugs!
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"They gave him morphine and ativan around the clock." The same thing happened to my mom. She had end stage liver cancer and went from totally responsive and eating, to unable to talk (words were very slurred) or eat. I know it was the medicine that did this. As soon as I took her off the Ativan, she was able to speak clearly. They definitely gave her too much of the medication. Then, they increased her morphine and did NOT tell me that she was very close to passing. Although I agree that the nurses are amazing and I could never do their jobs, I just wish there was more clear communication. Most of the time Ativan and Morphine mean end of life is very very near. I just wish I had known this so I would have stayed the night with my mom and been able to comfort her in her last hours. I will never forgive myself.
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Perhaps the reason people die so quickly in hospice care is because it's care administered when a patient's diagnosis is given to be six (now I hear it's 12) months to live. Extraordinary measures are never given. Pain is dealt with so the death can be pain free. Doctors and nurses aren't afraid to give medications now seen as 'evil' in the eyes of many because they slow down a person's respiratory system allowing pain to be alleviated.

It may help people to go to their website and read it's purpose. Many of us have never actually seen or experienced the way a person dies. As I've written before, death is not easy.

To Jimmyswife - your husband has passed. It's time to grieve, not wonder. Sometimes I believe we sit in our homes and wonder a lot. We go over the "We should have's', "Why didn't we' and the whole nine yards. Death is part of life. Until we really understand this, really inculcate this in our minds, we will always wonder what would have happened IF.

I don't believe your husband would have wanted this. He would want you to see he is now out of pain, he didn't have to suffer for long, etc.

I know this sounds rude and not empathetic, but I do know the pain. There are stages of grief. Please look them up.

We've gotten to a point where we as a people think we are invincible and medicine will keep us alive because it has so far. We believe others die, not ourselves. We're always shocked when it happens to someone very close to us because they weren't supposed to die 'so young', 'so quickly', whatever.

Please, don't beat yourself up over this. Take all the time you need to grieve your husband's death but remember to get back to living your life.

Doctor's have a pretty good idea as to how long a patient has. Yes, there are some (very few) who beat the odds.

Please take care of yourself and those around you who are grieving, too. At some point, we all die. Hopefully, we all die well, not hooked up to machines that are trying to keep us alive.
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To Veronica and surprise, Thank you for the comforting thoughts. You helped me think with a more positive attitude about my guilt for not being there when my Jimmy passed. He was thoughtful to my needs and it stands to reason that he would have wanted it this way. The Hospice House was very kind and helped Jimmy to be a comfortable as he could be for the amount of pain he was in. I will always wonder why my husband had to find out so late in his diagnosis. Thanks,
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I felt the same way. My mom has been gone 4 months and it's hard for me to deal with this so I will just say I notice the same thing.
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Hospice is beautiful! We had my SIL in for 11 days with stage 4 brain cancer. They were wonderful people, they did everything possible to make her comfortable. They do not hasten death they make it manageable. They provided morphine and meds to keep her calm. She waited until we left to room to pass. My mom was different. She did not wake from surgery. I still blame the Doc she should not have had the surgery in the first place. After 2 days on a vent my sister an ICU nurse made sure she had enough morphine to keep her calm but gave me the nudge that more would be pushed when necessary. It slows the breathing down considerably. Was it pushed more? I am not sure, was it the best thing? I guess, she was unconscious and never coming back... Mom waited until I was out of the room and there was just my dad there to pass. Mom knew, she did it on her terms..... but was it pushed? Still not sure.
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Jimmyswife, you have my great sympathies. I think Jimmy was a super husband and was wrapping things up by having you clean out the storage by the end of the year. He knew you would not be able once he passed, and he was trying to save some money to take care of you! What a sweet and generous man. He was probably relieved to have you run home so you would not witness his last sufferings. He was protecting you. How incredibly generous. I hope to be that sweet to my husband if I am the first to go! Many hugs go out to you.
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Jimmyswife so hard for you to understand when all this happened so quickly. Please accept my sympathies. Do not feel bad that you were not able to be with him for those last hours. People often want it that way and wait for their loved one to just even step out of the room till they pass. You both had such a short time to get used to the idea first of the diagnosis and then the short time he had left. You need time to process all of this. He was a very thoughtful man even at the end letting you know of things he could not take care of. It is often the case that loved ones do become restless at the very end especially those who remain aware as your husband did. So many thoughts must have been going through his mind so like you he really had not had time to prepare for the comming transition. You sound as though you are both relatively young and if that is the case his heart was still strong and did not give up as quickly as old tired hearts do. Of course you feel cheated anyone would among all the other emotions. You loved each other very much and your last goodbye was a good one hang on to that.
It sounds as though the hospice was a good one and they have grief counciling available usually for 13 months so try and attend as soon as you feel able. You will meet with other people and will find it helps to share your loss and cry together. Many people make lasting friends through these groups and stay in touch for many years to come. Lots of posters here have gone through such sad losses and you ar free to send a personal message to an individual if you have a question you do not want to share with the whole forum. they will be able to share their experiences and advise.
Blessings
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My husband died on December 8, 2014 in a Hospice House. He was diagnosed with Stage IV Lung Cancer on November 19, 2014. We had no knowledge of the diagnosis until then. He was taken to Hospice care on December 3, 2014 in a great deal of pain from the cancer and his lungs were building up with fluid. He was able to talk and tell me his wishes that he wanted me to carry out. He was also on the morphine pump and other pain medication to ease his pain. On the last day of his life, he asked me to go to a storage building to take care of cleaning it out before the end of year. I followed his request. I came back and told him what I had done and he said thank you and I love you. He called the RN and said the pain had become worse and asked for more medication. I received a call from home of an emergency that needed my attention. I kissed him and said I loved him and left to take care of the emergent situation. Within a few hours, I received a call that my husband passed away. I left and went to his side. He was still warm. I feel guilty that I even had to leave him in those last hours. I wanted to be there with him. The hospice nurse said he was restless and talking non stop for four hours. I feel cheated that I had to leave him and after 26 years, miss him terribly.
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FYI to Maggie Marshall. We weren't given a choice in the case of my mother. This was my first time dealing with this, the hospital moved her out of ICU into a regular room, we thought great she is getting better. We're than told they can do no more and hospice will be here to meet with you.

There was no option of staying in the hospital.

Put me in the camp who isn't a fan of hospice. The woman who met my dad and myself sat us down in the hospital TV lounge, I asked "can't we go somewhere else"(there were dozens of empty rooms) she didn't even check and talked to us like we were buying car insurance. I am sitting there losing it, in front of strangers and a blaring TV.

While the place looked nice, with French doors and fancy pillows, the care was not good. Nothing was communicated to us, nurse was very rude. I walked in the day before my mom died and she just said to me "your mom was spitting up blood" and kept walking....WTF?

When my mother passed the woman who called just said "this is Debbie from hospice your mother is dead"....just like that. We had just left her about 2 hours before.

I filed a complaint with the state and they did an onsite investigation, and guess what? They found violations in regards to rules and care. Too late for our family, but I hope it helped others.
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by medicare,s own definition there is room for even life saving measures in hospice if there is a reason to keep that person alive. for instance unfinished business of any sort or waiting for someone to arrive. my mother was fine when she left the rehab nursing facility she was recovering from back surgery in to come home with me on june 25th this year. i had cared for her as needed starting in earnest in 2009after a small stroke left her unable to drive.my son and i moved in and as time passed i phased out of my job as the care she required ramped up. please keep in mind that because her brother who was the executor and medical power of atty. wanted to put her in a home after another more serious stroke in 2011 and i basically refused and took her home thats when she and i both freely and often discussed removing him and allowing me to take over those roles also as she realized my dedication and willingness to do as she wished. she had a dnr,etc. and because her only grandson was born in 2006 we both felt it was only fair to leave her very small estate to us so we could get on our feet and move to smaller place as i started my job again. but as so often happens we never did anything mainly because i wanted to make sure she really recovered all of her faculties so that i was sure this really was her wish and that it was legal to do so. the stroke made it difficult to swallow so after struggling with her over the issue i finally approved fully her intention to not take any meds or see doctors for awhile. we were both fed up with endless appointments telling us what we already knew .she was sick and her prognosis was terminal eventually(she had hiv). she actually improved immediately because the meds side effects and contradictions were so many and serious.she had been taking 12 to 15 pills a day 5 of which were the aids meds. there werent any secondary infections or new ailments cropping up so i was pleased. she did great up until my brother passed away suddenly in oct.2013. it broke her heart but i talked to her and she knew also that her reason for living was my son who adored her and their closeness helped his autism dx. but i also explained if she truly was ready i would understand.. she fell getting out of bed while i took my child to school one morning and it turned out she fractured her back so the hospital who started her on antibiotics again sent her to the skilled nursing home after an outpatient surgery that was successful against my wishes to take her home because of the compromised immune response she had and the likely hood of infection with such close proximity to other sick people. right before her release we saw a new doctor whom she and i both liked and as a general inquiry i asked if hospice was appropriate since she wasnt seeking treatment for the hiv. i asked more to see if there would be more likely hood of home health aide type services than if we resumed regular home health. it was obvious her mobility wasnt better from rehab and i was concerned as i have an old back injury but i knew she wanted to be home and she was alert ,oriented but it was stated her appetite was not good. well ihad always been able to get her appetite whetted because i knew how and what she liked to eat and wasnt concerned. as i stated previously she was initially fine upon her discharge but by the end of the first day she had severe gastric upset and it was apparent she didnt feel well to her stomach. i told the hospice that day of what i observed and that now it was imperative to get her lawyer there to do the needed adjustments to her estate. everyone agreed she was competent and they understood it was our main objective regardless of anything else. there seemed little problem except i did continue to bath her and would get her freshened up before the nurses arrival for my mother was always appearance concious. she started refusing any food within a couple of days but they said her vitals were good even as i explained that doing laundry was killing me from her stomach upset. i never heard them ask about pain but i mentioned that as i moved her she was groaning and seemed very uncomfortable with her positioning.. she was drawing her knees to her chest. finally almost two weeks into her homecoming an aide saw her diarrea and said she thought my mother had aquired C difficule an intestinal bug in the nursing home that is prevalent and spreads easily and quickly. the nurse was furious to be contradicted and by that time i am calling the hospice frequently as i noticed her discomfort increasing and i knew she was dehydrated. they gave her oral antibiotics and told me to give her more gatorade... by this time she wasnt responding to anything from anyone and i kept thinking that an iv should be started to hydrate and give her the antibiotics more easily. how do i know she wanted to live? even as she had difficulty swallowing anything she was up until less than 24 hours of her death she was taking the pills they perscribed and CHEWING them and swallowing them.... i was literally beside myself. i knew by then the pills werent enough and that they wouldnt write an order for a hospital visit to stabilize her since apparently hospice doesnt do i.v.s at home. i was under the impression if i took her to the hospital anyway that medicare wouldnt pay but my mom had secondary insurance and honestly i would have gladly paid out of pocket. i continued to ask for pain meds and they said they werent necessary and her vitals looked good(?!) by the time i realized they were letting her die i knew a hospital ride would perhaps bring more pain and she definitely did not want to die in a hospital so i started playing all her favorite music and told her if she was ready i understood and that we would be ok. again this woman not even appearing conscious chewed the antibiotic i put in her mouth but was not able to drink any fluids and she moaned and grabbed my friend who came to be with me so she knew we were there. the hospice sent oxygen when she started gasping... the night she died i recieved a call from the director of the hospice informing me i was calling too frequently and was bothering them and that pain meds werent going to be given until they decided to perscribe them and that my mother was in hospice to die and why didnt i just let her go.the nurse came later at my request and was telling me my agitation and upset was silly and stressing everyone needlessly but she went ahead and ordered pain meds that showed up the next morning after mom was dead for several hours. my mothers wishes were to come home straighten out her affairs and let nature take its course .upon admittal to hospice she was fine. any diarhea in the 2-3 days after discharge from a medical situation in someone elderly or compromised immune response is to be investigated immediately as a C. difficule outbreak and promptly treated as highly infectious. this is according to the cdc here in atlanta as there have been instances of antibiotic resistence and because its highly contagious. not only did the hospice not follow protocol set forth by the cdc they ineffectively treated her and too late and to top it off she died in utter agony! i am devastated by the whole experience and feel strongly it was to increase the profit margin of this patient.and now her very small estate will not be distributed to us so my son and i are facing eviction at xmas this year. happy holidays!
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Created, it's not a "bother" to them. You need advice now! Give them a ring.
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Created, if you think you need them, call them. That is what they are there for. Hospice goes through this all the time, and we don't. They expect you to call when you have questions or just need support.
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Thanks I figure I call them durnin regular hours I don't want to bother them. They are already doing so much for me. Thank you for the hug
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created, you can call your hospice person and they will let you know what to do. Someone should be on duty 24 hours. Big hugs during this hard time.
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My gram has been on hospice since Oct 2014. They come to my home 3 times a wok they are great. So here is my story: gram has been leaving with me for 5 yrs this December. She has alzhimers and COPD. She has here ups and downs but since August 2014 it pretty much has change. Anyways around thanksgiving she was herself again joking playing had her mind some what for like 3 wks. Monday December 8th 2014 she was back to sleeping alot I wake her up dress her feed her but back to sleep she went. Tuesday slept until 2pm I dress her feed her back to sleep she went. Today I woke her up or she would have never got out of bed. I feed her bath her but she fell in a deep sleep in her chair mouth opened and all. At dinner she ate 2 small plates. Try to use bathroom but nothing. Then in her chair a deep sleep she went. So I finally put her back to bed at 7. Her breathing was horrible coughing was horrible and she had little pain. So I give her cough med and Advil. I'm not sure if she is getting sick or if this is part of the dying process. As she sleeps tonight breathing is heavy and loud. I'm not sure if I should give her morphine how do you know when to start it. I have excepted that she is passing and me and my family are ok with it we had a blast but I know her time is coming I just don't want to do it for her. So when do you know to give morphine
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Jeannie I don't know for sure but my experience has been the requirements are similar. There is of course the palliatic care admission where death is not anticipated in six months but maybe the patient needs continuous pain management. This is a relatively new program but patients can be accepted into this while they are still relatively functional and later transition into full hospice care
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Veronica91, thanks. When other insurance or the patient is paying for the hospice care (instead of Medicare paying) are the eligibility requirements different, do you know?
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Dogabone, I think you better reread that post, your way off on your comments. There was no blame at all, only praise. Don't attack unless your sure of what you read.
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Jeannie some private insurance does cover hospice care and of course you can also pay privately which will be on a sliding scale depending on income. A Medicare hospice is required to supply a set proportion of their hours with volunteer hours. volunteers can only provide such services as companionship, transportation or office work. Volunteers also work to raise funds by organizing such things as plant sales. Often patients will leave a legacy to the hospice and there are often memorial contributions. The allowance from Medicare does not nearly cover all the expences associated with patient care. If there is the luxury of an inpatient facility the money to aquire or build that has to come from somewhere.
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Just realized I had already written pretty much the same thing. Pardon the repeat. So much of how we feel about dying depends on what we feel is on the other side. If the spirit lives on, there is really no death -- just a change in where we are. I would rather be healthy and well on the other side. I like to think we get fresh new bodies or something along that line, so that we are free to run and play again.
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Something that many do not realize is that pain can keep a person from crossing over to the other side. Fighting pain robs a person of peace. It is a surprise to many people that when the pain stops, the person is able to face death with peace. They no longer have to fight the pain that was keeping them attached to their bodies. I hope that if I become ill and my body is hurting or I am gasping to breathe that someone will ease my pain to bring some peace. I would rather die quickly in peace than spend weeks fighting the pain that keeps me here. I'm not talking about assisted suicide. I am just talking about relief from pain.
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maseiloj, this is from the government websit MedlinePlus:

"maseiloj,Hospice care is end-of-life care. A team of health care professionals and volunteers provides it. They give medical, psychological, and spiritual support. The goal of the care is to help people who are dying have peace, comfort, and dignity. The caregivers try to control pain and other symptoms so a person can remain as alert and comfortable as possible. Hospice programs also provide services to support a patient's family.

Usually, a hospice patient is expected to live 6 months or less."

Here is another explanations of eligibility:
"n order to be eligible to elect hospice care under Medicare, an individual must be entitled to Part A of Medicare and certified as being terminally ill by a physician and having a prognosis of 6 months or less if the disease runs its normal course."

Who paid for your father's hospice care? If it was Medicare, your father had to have been certified as terminally ill with a life expectancy of six months or less. I am sorry if this was not clear to you at the time. The fact that your father did die so soon after going on hospice tends to confirm that he was, indeed, terminally ill.

If some other source paid for hospice care, then perhaps the rules are different. Can you tell us whether Medicare covered that care? If not, who did? We learn from each other and I've never heard of hospice covered by some other funding source. So I'm interested in learning.
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