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Edward, it may be that pain was the thing keeping your mother alive. One thing I've learned through reading hospice materials is that fighting pain can be a thing that keeps our loved one from crossing over. I wonder if when the morphine helped with the pain, your mother was able to see her way to the other side. Your mother was very ill, and the cancer she had was a very difficult one to rid the body of. I hope that you can reach the point where you see that this could have been a gift to her so she could stop fighting the pain.
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I am so sorry grieving your mother's death is giving you so much pain. Stop blaming yourself. Once cancer gets into the liver death is inevitable. it may have been possible to slow it down a little but at what cost and loss of quality of life. Your mother was only 64 and you were not expecting her to pass so soon. I think you are suffering from a very deep depression and which not knowing your health history would suggest has been brought on by you nother's death and your percieved mistakes in supervising her treatment.
Death from liver disease does come quickly when the time comes and many people feel more could have been done for their loved ones. It is also common for patients to refuse medications at the end of life. Giving it by injection probably would not have been significant because an equivalent dose usually less than the oral dose would have been ordered. Once morphine has been started it is usually not stopped because of withdrawal possibilities.
Edward I don't think Maggie was suggesting you should have sent Mom to the ER from my understanding she was saying you could have just sent her in and let the Drs do everything and anything to "save' her life. Is that what you have wanted to see. She had a DNR so obviously did not want to be recusitated by people junping on her chest, breaking ribs, intubating her and maintaining her on a vent for whatever time she had left. It would not affect whatever disease was killing her liver.
Many people share your views about the use of morphine at the end of life including many nurses. All I can tell you is that I would gratefully accept as much morphine or the equivalent was offered if I had end stage liver disease. A few people are genuinely allergic to morphine but your mom had been taking it for some time so that can not have caused her death. In these cases there are equally effecive alternatives to use. Please be comforted that your cared enough for your mother to want to do the best you could to save her but she had already decided to be a DNR so her wishes were followed. If you continue to feel so hopeless and helpless please seek some treatment. Does not mean you are mentally ill or will have to take pills for the rest of your life just that this is an acute situation for you and if it was a broken leg you would not think of refusing a splint to assist with healing. Blessings
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Thanks gladimere and ba8alou for your responses. It all happened around 4 months ago.I was lucky enough to be with her for the last year and half, the decisions were left to me and now i realise i couldnt have had the right state of mind to make those decisions. I know everyone loves there mum; she really was the most selfless & generous person ive ever known, on occasion risking her life to save others and a completely devoted mother. Im trying to keep going, as you say b8alou she wouldnt have wanted me to be like this. At the moment working or even leaving my room is difficult, breaking down three times a day and hoping every night i would have a vivid dream about her without realising its dream. I have considered professional help but don't really want to see my GP or having anything about mental health on my medical file. Even though i feel there's nothing that can be said because its over. I'll probably end up looking some alternative to GP. (I appreciate you all listening, its not something i am capable with discussing with anyone i know.).
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Thanks you jessiebelle and veronica. I appreciate your words & advice.
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Dear Edward, where do you live? Getting help for prolonged grief is not something that's going to be looked on badly. I'm curious why you think that. One thought is to contact the funeral home from which your mom was buried and find out if they sponsor grief groups. Your GP can prescribe antidepressants without referring you out to someone in the mental health profession.
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I don't mean to suggest that 4 months is "too long" to grieve. But not being able to go out and breaking down three times a day sounds debilitating and not good for you on so many levels. There is help out there, my friend. Please call someone tomorrow. And let us know how it goes with you.
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Edward, hospice groups can help you. If they do not have grief support groups themselves, they would certainly help you find one. Many churches also have freif support groups. Callin your agency on aging may also be of help. They are knowledgeable ofnso many resources. Find groups that share similar experiences, so you do not feel so alone.
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YES Hospice rushed my Dad's death indeed. I thought my Dad had a real chance to leave Hospice, however he was only there 5 days before he passed. On the third day my Dad shared a beer with my brother and held normal conversation, two days later he was dead. My Dad was going to Hospice for pain management. The first thing they told me when we arrived was that a lot of people think that they are there for exactly that reason, to "hasten death", but that is not true, they are only there to make your family member comfortable. My Dad went in Friday and I stayed all day and on Saturday as well, I worked Sunday so six other family members visited with my Dad and then I came and stayed the night. We had little bits of conversations here and there but he was uncomfortable in his bed, so he would sit up and hang his legs off of the side for the majority of the night, and since I was there this was acceptable and the night nurses did not say anything about it at all, everything was fine, he only received medication once during the night. Well, new morning shift nurse walked in, didn't talk to me or assess my dad, just said here's your medication which I responded he hasn't been in any pain, which she then responded well it's just his regularly scheduled medication. It seems to me if you're there for pain management you would be regularly assessed and asked if you have any pain, this is not the way it happens. My Dads pain was under control and he didn't need near as much any longer, I guess they didn't see it that way. I spoke to my Dad and said goodbye I would be back I'm just going home to shower and change. When I arrived back to Hospice they had a couch backed up against the side of his bed and then the recliner at the end of his bed. They came right in the room after me and moved everything away. They told me that he had been restless and they didn't want him to fall out of bed, the doctor changed his medication giving him Ativan timed. Well let me tell you, I never spoke to my Dad again. From that point on all he did was sleep. The following day in the afternoon he passed. I wish I had been there, I wish I had not left, but I did not think I was leaving my dad in the hands of somebody who would hasten his death because he was restless and wanted to sit up. It's not like he was out of control, he was begging to set up because his rear and his back were hurting. If I had known this is the way his care in Hospice would progress, I would have never taken him there. The only guilt I feel is for bringing him there in the first place. I have a new outlook on Hospice altogether. If you feel your loved one has a chance to recover and leave Hospice, don't go in the first place. If you want to spend quality time with your loved one, don't go to Hospice. In my experience I can say that if you have a terminally ill family member that is in unbearable pain and does not want live anymore, that's what Hospice is for. Unfortunately people will probably only come upon this post after-the-fact. I am sure that everybody's experience is different and every Hospice is different. Unfortunately my local Hospice was the death of my dad.
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Nobody goes to Hospice just for pain. The MD has to certify and submit test results that prove the patient is expected to die from ----------- within 6 months.
For my daughter, there was very little pain. She had Leukemia. The bone marrow transplant took, but it did not defeat the Leukemia.
On a Thursday she was sitting up and eating, but weak. She died on Saturday night. I administered her meds myself, and I know it was not enough to kill, just enough for comfort and peace. Please don't blame Hospice. It was his time.
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I couldn't have done it without hospice, they kept dad comfortable. His cancer had reached his entire body, bones also. I thought hospice was giving him to much medicine so I cut back on it to keep him a list alert. Worst mistake ever!! The pain came with a vengeance and dad was so irritated and frowning from pain, he kept asking pointing to the medicine, I gave him wat they said to give him after about 15 mins he was resting again, I was so relieved!! So thanks hospice for helping me take care my dad by keeping his pain at bay and not suffering as he ended his journey here
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maseiloj, I am very sorry about your father's death, and also very sorry that end-of-life decisions are still distressing you. I wish you peace.

Hospice is not a pain management program, except for those who are dying. Sometimes the evaluation is wrong about how close to death the person is, but the person must meet criteria that suggest death is likely within 6 months for the person to be even accepted. You apparently didn't agree with this prognosis for your father, but that is what the medical professionals determined.

You are absolutely right that a person should not go into hospice expecting to recover. Certainly that happens. It happened to my mother. It actually happens a lot. But hospice is for those who are expected to die soon. If you haven't accepted this prognosis, it is really best, in my opinion, not to use hospice at all.

My husband died on hospice. I hope that when my mother's time comes she will again be on hospice to ease the way. (I hope to have hospice for my own exit.) I do not believe that being on hospice shortens one's life. In my family's experience, it lessens the suffering.
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Jeannie I am so glad to hear a positive response from you. My impression as a retired hospice nurse is that the care patients recieve seems to allow them to live a little longer and everything possible is done to allow them to reach their goals rather than speed their demise. It is a very emotional time for famillies and making a hospice decision can be very hard because it includes accepting the fact that death is close. This causes much stress on the caregivers and they can feel they have made the wrong decision.It is important to realize that if you feel hospice is giving the wrong treatment you are perfectly free to have your loved one discharged call 911 and go to the hospital. There is no penalty for doing this. Hospice personel will advise they are not the health care police, the final decision always rests with the patient and caregivers.
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Yes Maggie Marshall I as well wish I would have dealt with more ER visits than with Hospice. They say first off you have to meet a certain criteria to STAY in Hospice, and gave me examples of many people who had to leave because they no longer needed pain medication (likely story) I foolishly believed this and was under the impression they were going to send my father out!
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Dogabone have you gone through this experience? I hope you have, otherwise you have no room to judge. I assume everyones experience is different. I am quite sure that Hospice does help SOME people and sometimes they just don't.
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Pam the Hospice nurse expressly told me that they could manage my fathers pain, he had no terminal illness, nothing was certified that he was expected to die within six months. Maybe your state Hospice is different?? I realize that my Dad was sick and I realize that he may very well have inevitably wound up in this same place. My Dad was in a lot of pain and he was giving up so this seemed to be the answer, but as soon as his pain was gone he was fine so you have to understand watching him go from fine to gone in three days was extremely hard.
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Mas, what was your dad's pain from? What doctor certified him for Hospice? I have never heard of Hospice for pain management. Palliative care, perhaps, but not Hospice. What state are you in? I'm in NY, as is Pam, my mother is in Connecticut. I also have some experience with other relatives in Florida.
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Pain management is part of the services offered to hospice patients. They are not admitted just for pain management they must have a terminal illness with a life expectancy of 6 months or less. I am also in NYS
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Edward I understand how u feel. Dad died of ct 15, his cancer had spread every where. He was in pain all the time, couldn't eat, refused drink anything cause everything kept coming up, I went from putting 5 ensures to 1 a day in his feeding tube cause nothing stayed down. Then he got really sick back to er we went, which had become a every other day thing, his liver was failing and kidneys, they said they could do surgery I said no, they had already Done surgery on the kidney putting a stint in so it would drain the bile, so so much more happened, they gave dad six mos to live, I was speechless by the time he got on hospice I was relieved they controlled his pain, and his agitation. He had got to the point he was not himself anymore. Many on herebsay hospice bad, how? They help my dad transition peacefully unaware of the suffering his body was enduring as it broke down. I love my dad 100 times infinity!! But I was glad god called him home because his suffering was horrible. Why do you down hospice? Why would you want to see ur family member suffer, yes maybe they would stay longer if they hadn't been on hospice, but how long? How much pain, suffeeing ? I love dad and would have loved for him to be here with me longer, but not likebthat . dad quality of life was gone, he asked to be comfortable on his last days so I honored his wishes, thanks hospice for helping me do so. I feel lost now that dad is gone, but he is no longer suffering
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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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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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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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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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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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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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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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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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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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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, 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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Created, it's not a "bother" to them. You need advice now! Give them a ring.
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