Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Has anyone ever talked to you or your mother about being evaluated for liver transplant? Jackie Subject: My Mother To: livercirrhosissupport Date: Wednesday, July 21, 2010, 9:49 PM  I don't know where to start. My mother was diagnosed with cirrhosis of the liver last year. She went into the hospital in May because her blood pressure dropped to 60/40 and she had gained 30 pounds of fluid. She was released 10 days later and only lost 5 pounds. Now she is just skin and bones. She is getting mean. She was always a vocal person, but usually pretty nice, now she is very mean to her sister who stays with her while everyone else works. I don't know what to expect or how to help. Her Dr. told us she has 6 months to live and I see her going downhill every day. Does anyone know what we can expect to happen. She is now bedridden and can't walk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 I see that Jackie has already asked about transplant. If she doesn't want one or does not qualify for one, have you considered Hospice care? If she has been told she has 6 months or less to live, she should qualify for Hospice care. This can be done at her home, the home of a friend or relative, an in-patient hospice facility or the in-patient hospice rooms of a hospital. I had home hospice help with my husband during the last 2-3 weeks of his life. They were invaluable in helping me deal with him and with losing him. As for what you can expect, it varies with each individual, but some things do seem to be almost universal. The fluid retention will continue to get worse. Has she had a paracentesis? This is where they insert a needle into her abdominal cavity and draw off fluid. It can usually be done as an out patient and can give real relief for at least a few days at a time. Is she taking lacrulose or some other form of medication to help with hepatic encephalitis? Hepatic encephalitis happens when ammonia and other chemicals are accumulated in the body when the liver is not longer able to neutralize them or clear them from the body. It affects the brain and causes dementia, mood changes, confusion and a host of mental status changes that could very well explain that she is becoming 'nasty' with her sister or others. It may very well give her diahrrea, but that can usually be dealt with by having her wear disposable underwear. At the very end, the last 10-14 days of my husband's life, he slept almost constantly, did not eat, could not take his medications or even drink liquids. He was so weak he could barely get out of his chair and could only walk to the bathroom with great assistance from me. About 3-4 days before he passed, a hospital bed was delivered and set up. The local ambulance service came and moved him into his bed on a Thursday morning. By Saturday, he was no longer talking coherently, could not control bodily functions and basically just lay in his bed and slept. He died at 1:30 a.m. on the next Monday morning. Hospice supplied me with medications to dry up secretions to keep him from choking; to help his body relax and not struggle and to lessen any anxiety he might be experiencing but was unable to tell me about. He died very peacefully, but it was very ugly as soon as he passed. I knew what to expect because the Hospice Nurses had prepared me before hand, but it was still hard to see. During the time in the hospital bed, he talked a lot to someone or something I could not see. He talked to this 'person' and laughed a lot with them. When he got to the point that he didn't even talk to this 'person', he still called my name and was very content as soon as I answered him and touched his hand. I played some of our favorite music in the room and turned on the TV to some of his favorite programs when they were on. Family and friends were in and out as they desired. My sisters came on Sunday morning, very early, and stayed until after the funeral home came to take his body away. His mother was with us, but didn't actually stay awake for most of the time. However, she wanted to be there and I felt she had the right to be if she wanted to. He was not combative or ugly in any way. His leaving was exactly as he had requested; at home, quiet, with me and other family at his bedside. There was no wailing when he passed. We cried softly because we knew we would always miss him. However, we also knew his suffering was finally over and for that we were thankful. If you would have any questions whatsoever, please do not hesitate to ask me. I will share any and everything I can with you to help you during this time. I so understand what you are facing. My Mom died in April 2006 and my husband died in Jan 2009. Please know my heart and my prayers are with you and I will help in any way I can. Many hugs.............. Diane C from TN http://auntdisexperimentallife.blogspot.com/ > > > I don't know where to start. My mother was diagnosed with cirrhosis of the > liver last year. She went into the hospital in May because her blood > pressure dropped to 60/40 and she had gained 30 pounds of fluid. She was > released 10 days later and only lost 5 pounds. > > Now she is just skin and bones. She is getting mean. She was always a vocal > person, but usually pretty nice, now she is very mean to her sister who > stays with her while everyone else works. I don't know what to expect or how > to help. Her Dr. told us she has 6 months to live and I see her going > downhill every day. > > Does anyone know what we can expect to happen. She is now bedridden and > can't walk. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Hi . It sounds like your Mom has reached the place my husband had reached...she's just ready to go home and let the suffering end. I think I read in another post that she is 77? If so, that would most likely disqualify her from receiving a transplant even if she were interested. I know the age varies by state, but I believe 75 is the oldest I have heard. Someone please correct me if I am wrong. My mother had renal failure. She was 66 by the time she would have been evaluated for a transplant. The cut-off age in TN is 70. However, we decided against it anyway because she also had Alzheimer's. Her doctor was very straight forward with us and told us we should consider the quality of life we would be preserving. If she got a kidney, that would not keep her from losing her mind to Alzheimer's. Momma had told me the day she was diagnosed with Alzheimer's that she prayed God would take her of something else before she lost her mind and didn't know us. She knew every one of us right up until she breathed her last breath. We saw renal disease as the way God answered her prayer. Losing a loved one to death is so hard, but there are worse things. I know, I have done both. My maternal grandmother died of complications of Alzheimer's and didn't know anything. Momma so much did not want that to happen to her; neither did we. She suffered very little as compared to some whom I've known. My husband also suffered much less than many I've known. I pray your Mom can find relief from her pain and suffering and that you and your family can accept her decisions and give her permission to go if that is what she wants. I know it is not easy but it is the greatest gift you will ever give her if it is what she desires. My prayers are with you, your Mom and your other family members. Many hugs........ Diane C from TN http://auntdisexperimentallife.blogspot.com/ > > > Thank you Diane. > > I appreciate you response. I know it had to be hard to write. I don't know > the exact medicines she's on, my sister takes her to the Dr. I know she's > on 4 pills a day for the water and 3 pills for the pain. I don't know the > name, but I will find out!!! I didn't think she was a candidate of the > transplant, but I will ask soon. I have a brother and 2 sisters who would > gladly give her a part of our liver. She won't allow them to insert the > needle. They wanted to when she was in the hospital, but she said no. > > They aren't sure how she got this disease because she really doesn't drink > and never has. They said it could be from medicines or hereditary. > > Thanks for the response. > > > > > Re: My Mother > > >I see that Jackie has already asked about transplant. If she doesn't want > > one or does not qualify for one, have you considered Hospice care? If she > > has been told she has 6 months or less to live, she should qualify for > > Hospice care. This can be done at her home, the home of a friend or > > relative, an in-patient hospice facility or the in-patient hospice rooms > > of > > a hospital. I had home hospice help with my husband during the last 2-3 > > weeks of his life. They were invaluable in helping me deal with him and > > with losing him. > > > > As for what you can expect, it varies with each individual, but some > > things > > do seem to be almost universal. The fluid retention will continue to get > > worse. Has she had a paracentesis? This is where they insert a needle > > into > > her abdominal cavity and draw off fluid. It can usually be done as an out > > patient and can give real relief for at least a few days at a time. Is > > she > > taking lacrulose or some other form of medication to help with hepatic > > encephalitis? Hepatic encephalitis happens when ammonia and other > > chemicals > > are accumulated in the body when the liver is not longer able to > > neutralize > > them or clear them from the body. It affects the brain and causes > > dementia, > > mood changes, confusion and a host of mental status changes that could > > very > > well explain that she is becoming 'nasty' with her sister or others. It > > may > > very well give her diahrrea, but that can usually be dealt with by having > > her wear disposable underwear. > > > > At the very end, the last 10-14 days of my husband's life, he slept > almost > > constantly, did not eat, could not take his medications or even drink > > liquids. He was so weak he could barely get out of his chair and could > > only > > walk to the bathroom with great assistance from me. About 3-4 days before > > he passed, a hospital bed was delivered and set up. The local ambulance > > service came and moved him into his bed on a Thursday morning. By > > Saturday, > > he was no longer talking coherently, could not control bodily functions > > and > > basically just lay in his bed and slept. He died at 1:30 a.m. on the next > > Monday morning. > > > > Hospice supplied me with medications to dry up secretions to keep him > from > > choking; to help his body relax and not struggle and to lessen any > anxiety > > he might be experiencing but was unable to tell me about. He died very > > peacefully, but it was very ugly as soon as he passed. I knew what to > > expect because the Hospice Nurses had prepared me before hand, but it was > > still hard to see. During the time in the hospital bed, he talked a lot > > to > > someone or something I could not see. He talked to this 'person' and > > laughed a lot with them. When he got to the point that he didn't even > > talk > > to this 'person', he still called my name and was very content as soon as > > > I > > answered him and touched his hand. > > > > I played some of our favorite music in the room and turned on the TV to > > some > > of his favorite programs when they were on. Family and friends were in > > and > > out as they desired. My sisters came on Sunday morning, very early, and > > stayed until after the funeral home came to take his body away. His > > mother > > was with us, but didn't actually stay awake for most of the time. > > However, > > she wanted to be there and I felt she had the right to be if she wanted > > to. > > He was not combative or ugly in any way. His leaving was exactly as he > > had > > requested; at home, quiet, with me and other family at his bedside. There > > was no wailing when he passed. We cried softly because we knew we would > > always miss him. However, we also knew his suffering was finally over and > > for that we were thankful. > > > > If you would have any questions whatsoever, please do not hesitate to ask > > me. I will share any and everything I can with you to help you during > > this > > time. I so understand what you are facing. My Mom died in April 2006 and > > my husband died in Jan 2009. Please know my heart and my prayers are with > > you and I will help in any way I can. > > > > > Many hugs.............. > > > > Diane C from TN > > > > http://auntdisexperimentallife.blogspot.com/ > > > > > > > > > > > > > > On Wed, Jul 21, 2010 at 8:49 PM, ghornet54 <ghornet54@...<ghornet54%40insightbb.com>> > > > wrote: > > > >> > >> > >> I don't know where to start. My mother was diagnosed with cirrhosis of > >> the > >> liver last year. She went into the hospital in May because her blood > >> pressure dropped to 60/40 and she had gained 30 pounds of fluid. She was > >> released 10 days later and only lost 5 pounds. > >> > >> Now she is just skin and bones. She is getting mean. She was always a > >> vocal > >> person, but usually pretty nice, now she is very mean to her sister who > >> stays with her while everyone else works. I don't know what to expect or > > >> how > >> to help. Her Dr. told us she has 6 months to live and I see her going > >> downhill every day. > >> > >> Does anyone know what we can expect to happen. She is now bedridden and > >> can't walk. > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Thanks Diane. My mother is 77. I was telling my sister about joining this group and asked about the transplant. She asked the same thing and was told that at 77 she's too old to be on the list and she thought the Dr said that her liver was too far gone for a transplant. I don't understand that part. We're trying to make any time she has left as comfortable as possible. I called the Dr today to get Home Health to help and he's getting the paperwork together for that. Was supposed to happen 2 weeks ago, but apparently he forgot! The way she looks I really think she only has maybe a few months left and she is in a lot of pain. I'm now trying to make that as comfortable as possible. I also asked about Hospice, but he thought it was too early for that. My neice is an EMT and she thinks I should push for Hospice no matter what he thinks. I will talk to her again tomorrow. By the way I don't know how was entered, because my name is . I really appreciate everything!!! Re: My Mother >> >> >I see that Jackie has already asked about transplant. If she doesn't >> >want >> > one or does not qualify for one, have you considered Hospice care? If >> > she >> > has been told she has 6 months or less to live, she should qualify for >> > Hospice care. This can be done at her home, the home of a friend or >> > relative, an in-patient hospice facility or the in-patient hospice >> > rooms >> > of >> > a hospital. I had home hospice help with my husband during the last 2-3 >> > weeks of his life. They were invaluable in helping me deal with him and >> > with losing him. >> > >> > As for what you can expect, it varies with each individual, but some >> > things >> > do seem to be almost universal. The fluid retention will continue to >> > get >> > worse. Has she had a paracentesis? This is where they insert a needle >> > into >> > her abdominal cavity and draw off fluid. It can usually be done as an >> > out >> > patient and can give real relief for at least a few days at a time. Is >> > she >> > taking lacrulose or some other form of medication to help with hepatic >> > encephalitis? Hepatic encephalitis happens when ammonia and other >> > chemicals >> > are accumulated in the body when the liver is not longer able to >> > neutralize >> > them or clear them from the body. It affects the brain and causes >> > dementia, >> > mood changes, confusion and a host of mental status changes that could >> > very >> > well explain that she is becoming 'nasty' with her sister or others. It >> > may >> > very well give her diahrrea, but that can usually be dealt with by >> > having >> > her wear disposable underwear. >> > >> > At the very end, the last 10-14 days of my husband's life, he slept >> almost >> > constantly, did not eat, could not take his medications or even drink >> > liquids. He was so weak he could barely get out of his chair and could >> > only >> > walk to the bathroom with great assistance from me. About 3-4 days >> > before >> > he passed, a hospital bed was delivered and set up. The local ambulance >> > service came and moved him into his bed on a Thursday morning. By >> > Saturday, >> > he was no longer talking coherently, could not control bodily functions >> > and >> > basically just lay in his bed and slept. He died at 1:30 a.m. on the >> > next >> > Monday morning. >> > >> > Hospice supplied me with medications to dry up secretions to keep him >> from >> > choking; to help his body relax and not struggle and to lessen any >> anxiety >> > he might be experiencing but was unable to tell me about. He died very >> > peacefully, but it was very ugly as soon as he passed. I knew what to >> > expect because the Hospice Nurses had prepared me before hand, but it >> > was >> > still hard to see. During the time in the hospital bed, he talked a lot >> > to >> > someone or something I could not see. He talked to this 'person' and >> > laughed a lot with them. When he got to the point that he didn't even >> > talk >> > to this 'person', he still called my name and was very content as soon >> > as >> >> > I >> > answered him and touched his hand. >> > >> > I played some of our favorite music in the room and turned on the TV to >> > some >> > of his favorite programs when they were on. Family and friends were in >> > and >> > out as they desired. My sisters came on Sunday morning, very early, and >> > stayed until after the funeral home came to take his body away. His >> > mother >> > was with us, but didn't actually stay awake for most of the time. >> > However, >> > she wanted to be there and I felt she had the right to be if she wanted >> > to. >> > He was not combative or ugly in any way. His leaving was exactly as he >> > had >> > requested; at home, quiet, with me and other family at his bedside. >> > There >> > was no wailing when he passed. We cried softly because we knew we would >> > always miss him. However, we also knew his suffering was finally over >> > and >> > for that we were thankful. >> > >> > If you would have any questions whatsoever, please do not hesitate to >> > ask >> > me. I will share any and everything I can with you to help you during >> > this >> > time. I so understand what you are facing. My Mom died in April 2006 >> > and >> > my husband died in Jan 2009. Please know my heart and my prayers are >> > with >> > you and I will help in any way I can. >> >> > >> > Many hugs.............. >> > >> > Diane C from TN >> > >> > http://auntdisexperimentallife.blogspot.com/ >> > >> > >> > >> > >> > >> > >> > On Wed, Jul 21, 2010 at 8:49 PM, ghornet54 >> > <ghornet54@...<ghornet54%40insightbb.com>> >> >> > wrote: >> > >> >> >> >> >> >> I don't know where to start. My mother was diagnosed with cirrhosis of >> >> the >> >> liver last year. She went into the hospital in May because her blood >> >> pressure dropped to 60/40 and she had gained 30 pounds of fluid. She >> >> was >> >> released 10 days later and only lost 5 pounds. >> >> >> >> Now she is just skin and bones. She is getting mean. She was always a >> >> vocal >> >> person, but usually pretty nice, now she is very mean to her sister >> >> who >> >> stays with her while everyone else works. I don't know what to expect >> >> or >> >> >> how >> >> to help. Her Dr. told us she has 6 months to live and I see her going >> >> downhill every day. >> >> >> >> Does anyone know what we can expect to happen. She is now bedridden >> >> and >> >> can't walk. >> >> >> >> >> >> >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 I'm sorry ! My mind doesn't always work the best anymore; perhaps it never did?! Anyway, I agree with your niece, push for Hospice. They are so much better than Home Health because they are geared toward the dying experience. Home Health is more about rehabilitative care. They just are not as good at helping the patient or the family prepare for the inevitable. Also, they aren't as good at pain control. My husband never had to suffer with Hospice because they are geared toward controlling pain and making whatever time left as good as is humanly possible for the patient and the family. Please keep us informed as to how your Mom is doing. I am praying for her and for all of your family. Many hugs.............. Diane C from TN http://auntdisexperimentallife.blogspot.com/ > > > Thanks Diane. My mother is 77. I was telling my sister about joining this > group and asked about the transplant. She asked the same thing and was told > > that at 77 she's too old to be on the list and she thought the Dr said that > > her liver was too far gone for a transplant. I don't understand that part. > We're trying to make any time she has left as comfortable as possible. I > called the Dr today to get Home Health to help and he's getting the > paperwork together for that. Was supposed to happen 2 weeks ago, but > apparently he forgot! The way she looks I really think she only has maybe a > > few months left and she is in a lot of pain. I'm now trying to make that as > > comfortable as possible. I also asked about Hospice, but he thought it was > too early for that. My neice is an EMT and she thinks I should push for > Hospice no matter what he thinks. I will talk to her again tomorrow. > > By the way I don't know how was entered, because my name is . > > I really appreciate everything!!! > > > > Re: My Mother > >> > >> >I see that Jackie has already asked about transplant. If she doesn't > >> >want > >> > one or does not qualify for one, have you considered Hospice care? If > >> > she > >> > has been told she has 6 months or less to live, she should qualify for > >> > Hospice care. This can be done at her home, the home of a friend or > >> > relative, an in-patient hospice facility or the in-patient hospice > >> > rooms > >> > of > >> > a hospital. I had home hospice help with my husband during the last > 2-3 > >> > weeks of his life. They were invaluable in helping me deal with him > and > >> > with losing him. > >> > > >> > As for what you can expect, it varies with each individual, but some > >> > things > >> > do seem to be almost universal. The fluid retention will continue to > >> > get > >> > worse. Has she had a paracentesis? This is where they insert a needle > >> > into > >> > her abdominal cavity and draw off fluid. It can usually be done as an > >> > out > >> > patient and can give real relief for at least a few days at a time. Is > >> > she > >> > taking lacrulose or some other form of medication to help with hepatic > >> > encephalitis? Hepatic encephalitis happens when ammonia and other > >> > chemicals > >> > are accumulated in the body when the liver is not longer able to > >> > neutralize > >> > them or clear them from the body. It affects the brain and causes > >> > dementia, > >> > mood changes, confusion and a host of mental status changes that could > >> > very > >> > well explain that she is becoming 'nasty' with her sister or others. > It > >> > may > >> > very well give her diahrrea, but that can usually be dealt with by > >> > having > >> > her wear disposable underwear. > >> > > >> > At the very end, the last 10-14 days of my husband's life, he slept > >> almost > >> > constantly, did not eat, could not take his medications or even drink > >> > liquids. He was so weak he could barely get out of his chair and could > >> > only > >> > walk to the bathroom with great assistance from me. About 3-4 days > >> > before > >> > he passed, a hospital bed was delivered and set up. The local > ambulance > >> > service came and moved him into his bed on a Thursday morning. By > >> > Saturday, > >> > he was no longer talking coherently, could not control bodily > functions > >> > and > >> > basically just lay in his bed and slept. He died at 1:30 a.m. on the > >> > next > >> > Monday morning. > >> > > >> > Hospice supplied me with medications to dry up secretions to keep him > >> from > >> > choking; to help his body relax and not struggle and to lessen any > >> anxiety > >> > he might be experiencing but was unable to tell me about. He died very > >> > peacefully, but it was very ugly as soon as he passed. I knew what to > >> > expect because the Hospice Nurses had prepared me before hand, but it > >> > was > >> > still hard to see. During the time in the hospital bed, he talked a > lot > >> > to > >> > someone or something I could not see. He talked to this 'person' and > >> > laughed a lot with them. When he got to the point that he didn't even > >> > talk > >> > to this 'person', he still called my name and was very content as soon > > >> > as > >> > >> > I > >> > answered him and touched his hand. > >> > > >> > I played some of our favorite music in the room and turned on the TV > to > >> > some > >> > of his favorite programs when they were on. Family and friends were in > >> > and > >> > out as they desired. My sisters came on Sunday morning, very early, > and > >> > stayed until after the funeral home came to take his body away. His > >> > mother > >> > was with us, but didn't actually stay awake for most of the time. > >> > However, > >> > she wanted to be there and I felt she had the right to be if she > wanted > >> > to. > >> > He was not combative or ugly in any way. His leaving was exactly as he > >> > had > >> > requested; at home, quiet, with me and other family at his bedside. > >> > There > >> > was no wailing when he passed. We cried softly because we knew we > would > >> > always miss him. However, we also knew his suffering was finally over > >> > and > >> > for that we were thankful. > >> > > >> > If you would have any questions whatsoever, please do not hesitate to > >> > ask > >> > me. I will share any and everything I can with you to help you during > >> > this > >> > time. I so understand what you are facing. My Mom died in April 2006 > >> > and > >> > my husband died in Jan 2009. Please know my heart and my prayers are > >> > with > >> > you and I will help in any way I can. > >> > >> > > >> > Many hugs.............. > >> > > >> > Diane C from TN > >> > > >> > http://auntdisexperimentallife.blogspot.com/ > >> > > >> > > >> > > >> > > >> > > >> > > >> > On Wed, Jul 21, 2010 at 8:49 PM, ghornet54 > >> > <ghornet54@... <ghornet54%40insightbb.com><ghornet54% > 40insightbb.com>> > >> > >> > wrote: > >> > > >> >> > >> >> > >> >> I don't know where to start. My mother was diagnosed with cirrhosis > of > >> >> the > >> >> liver last year. She went into the hospital in May because her blood > >> >> pressure dropped to 60/40 and she had gained 30 pounds of fluid. She > >> >> was > >> >> released 10 days later and only lost 5 pounds. > >> >> > >> >> Now she is just skin and bones. She is getting mean. She was always a > >> >> vocal > >> >> person, but usually pretty nice, now she is very mean to her sister > >> >> who > >> >> stays with her while everyone else works. I don't know what to expect > > >> >> or > >> > >> >> how > >> >> to help. Her Dr. told us she has 6 months to live and I see her going > >> >> downhill every day. > >> >> > >> >> Does anyone know what we can expect to happen. She is now bedridden > >> >> and > >> >> can't walk. > >> >> > >> >> > >> >> > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 Dear , you mom may be to old for a transplant, but I wouldnt take any one's word on that except a transplant surgeon or transplant social worker. If the one who said no transplant was a primary care doctor or any other doctor except a transplant doc, I wouodnt trust it. So many people on here have been given the wrong information. One person had a physician's assitant insisting that they could not get a transplant, and it turned out that it was just poppycock! If she is not qualified for hospice, then she should be able to get a transplant. Palliative care and transplant are the two only choices I know of when they are this sick and suffering. For God's sake if she is that much pain, she needs a good hospice nurse or some good palliative care. Please follow this link for the definition of palliative care. Love, Bobby http://www.getpalliativecare.org/?gclid=CLyphJLAh6MCFRFY2godwzMLdw Democracy is two wolves and a lamb voting on what to have for lunch. Liberty is a well armed lamb contesting the vote. - lin ________________________________ To: livercirrhosissupport Sent: Fri, July 23, 2010 7:35:20 PM Subject: Re: My Mother Thanks Diane. My mother is 77. I was telling my sister about joining this group and asked about the transplant. She asked the same thing and was told that at 77 she's too old to be on the list and she thought the Dr said that her liver was too far gone for a transplant. I don't understand that part. We're trying to make any time she has left as comfortable as possible. I called the Dr today to get Home Health to help and he's getting the paperwork together for that. Was supposed to happen 2 weeks ago, but apparently he forgot! The way she looks I really think she only has maybe a few months left and she is in a lot of pain. I'm now trying to make that as comfortable as possible. I also asked about Hospice, but he thought it was too early for that. My neice is an EMT and she thinks I should push for Hospice no matter what he thinks. I will talk to her again tomorrow. By the way I don't know how was entered, because my name is . I really appreciate everything!!! Re: My Mother >> >> >I see that Jackie has already asked about transplant. If she doesn't >> >want >> > one or does not qualify for one, have you considered Hospice care? If >> > she >> > has been told she has 6 months or less to live, she should qualify for >> > Hospice care. This can be done at her home, the home of a friend or >> > relative, an in-patient hospice facility or the in-patient hospice >> > rooms >> > of >> > a hospital. I had home hospice help with my husband during the last 2-3 >> > weeks of his life. They were invaluable in helping me deal with him and >> > with losing him. >> > >> > As for what you can expect, it varies with each individual, but some >> > things >> > do seem to be almost universal. The fluid retention will continue to >> > get >> > worse. Has she had a paracentesis? This is where they insert a needle >> > into >> > her abdominal cavity and draw off fluid. It can usually be done as an >> > out >> > patient and can give real relief for at least a few days at a time. Is >> > she >> > taking lacrulose or some other form of medication to help with hepatic >> > encephalitis? Hepatic encephalitis happens when ammonia and other >> > chemicals >> > are accumulated in the body when the liver is not longer able to >> > neutralize >> > them or clear them from the body. It affects the brain and causes >> > dementia, >> > mood changes, confusion and a host of mental status changes that could >> > very >> > well explain that she is becoming 'nasty' with her sister or others. It >> > may >> > very well give her diahrrea, but that can usually be dealt with by >> > having >> > her wear disposable underwear. >> > >> > At the very end, the last 10-14 days of my husband's life, he slept >> almost >> > constantly, did not eat, could not take his medications or even drink >> > liquids. He was so weak he could barely get out of his chair and could >> > only >> > walk to the bathroom with great assistance from me. About 3-4 days >> > before >> > he passed, a hospital bed was delivered and set up. The local ambulance >> > service came and moved him into his bed on a Thursday morning. By >> > Saturday, >> > he was no longer talking coherently, could not control bodily functions >> > and >> > basically just lay in his bed and slept. He died at 1:30 a.m. on the >> > next >> > Monday morning. >> > >> > Hospice supplied me with medications to dry up secretions to keep him >> from >> > choking; to help his body relax and not struggle and to lessen any >> anxiety >> > he might be experiencing but was unable to tell me about. He died very >> > peacefully, but it was very ugly as soon as he passed. I knew what to >> > expect because the Hospice Nurses had prepared me before hand, but it >> > was >> > still hard to see. During the time in the hospital bed, he talked a lot >> > to >> > someone or something I could not see. He talked to this 'person' and >> > laughed a lot with them. When he got to the point that he didn't even >> > talk >> > to this 'person', he still called my name and was very content as soon >> > as >> >> > I >> > answered him and touched his hand. >> > >> > I played some of our favorite music in the room and turned on the TV to >> > some >> > of his favorite programs when they were on. Family and friends were in >> > and >> > out as they desired. My sisters came on Sunday morning, very early, and >> > stayed until after the funeral home came to take his body away. His >> > mother >> > was with us, but didn't actually stay awake for most of the time. >> > However, >> > she wanted to be there and I felt she had the right to be if she wanted >> > to. >> > He was not combative or ugly in any way. His leaving was exactly as he >> > had >> > requested; at home, quiet, with me and other family at his bedside. >> > There >> > was no wailing when he passed. We cried softly because we knew we would >> > always miss him. However, we also knew his suffering was finally over >> > and >> > for that we were thankful. >> > >> > If you would have any questions whatsoever, please do not hesitate to >> > ask >> > me. I will share any and everything I can with you to help you during >> > this >> > time. I so understand what you are facing. My Mom died in April 2006 >> > and >> > my husband died in Jan 2009. Please know my heart and my prayers are >> > with >> > you and I will help in any way I can. >> >> > >> > Many hugs.............. >> > >> > Diane C from TN >> > >> > http://auntdisexperimentallife.blogspot.com/ >> > >> > >> > >> > >> > >> > >> > On Wed, Jul 21, 2010 at 8:49 PM, ghornet54 >> > <ghornet54@...<ghornet54%40insightbb.com>> >> >> > wrote: >> > >> >> >> >> >> >> I don't know where to start. My mother was diagnosed with cirrhosis of >> >> the >> >> liver last year. She went into the hospital in May because her blood >> >> pressure dropped to 60/40 and she had gained 30 pounds of fluid. She >> >> was >> >> released 10 days later and only lost 5 pounds. >> >> >> >> Now she is just skin and bones. She is getting mean. She was always a >> >> vocal >> >> person, but usually pretty nice, now she is very mean to her sister >> >> who >> >> stays with her while everyone else works. I don't know what to expect >> >> or >> >> >> how >> >> to help. Her Dr. told us she has 6 months to live and I see her going >> >> downhill every day. >> >> >> >> Does anyone know what we can expect to happen. She is now bedridden >> >> and >> >> can't walk. >> >> >> >> >> >> >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Thanks for the reply. Is getting mean a part of the medicine? My mother is very hateful at times and mean. Some days she's her old self and other days she's mean. She forgets things also. Re: My Mother >> >> >I see that Jackie has already asked about transplant. If she doesn't >> >want >> > one or does not qualify for one, have you considered Hospice care? If >> > she >> > has been told she has 6 months or less to live, she should qualify for >> > Hospice care. This can be done at her home, the home of a friend or >> > relative, an in-patient hospice facility or the in-patient hospice >> > rooms >> > of >> > a hospital. I had home hospice help with my husband during the last 2-3 >> > weeks of his life. They were invaluable in helping me deal with him and >> > with losing him. >> > >> > As for what you can expect, it varies with each individual, but some >> > things >> > do seem to be almost universal. The fluid retention will continue to >> > get >> > worse. Has she had a paracentesis? This is where they insert a needle >> > into >> > her abdominal cavity and draw off fluid. It can usually be done as an >> > out >> > patient and can give real relief for at least a few days at a time. Is >> > she >> > taking lacrulose or some other form of medication to help with hepatic >> > encephalitis? Hepatic encephalitis happens when ammonia and other >> > chemicals >> > are accumulated in the body when the liver is not longer able to >> > neutralize >> > them or clear them from the body. It affects the brain and causes >> > dementia, >> > mood changes, confusion and a host of mental status changes that could >> > very >> > well explain that she is becoming 'nasty' with her sister or others. It >> > may >> > very well give her diahrrea, but that can usually be dealt with by >> > having >> > her wear disposable underwear. >> > >> > At the very end, the last 10-14 days of my husband's life, he slept >> almost >> > constantly, did not eat, could not take his medications or even drink >> > liquids. He was so weak he could barely get out of his chair and could >> > only >> > walk to the bathroom with great assistance from me. About 3-4 days >> > before >> > he passed, a hospital bed was delivered and set up. The local ambulance >> > service came and moved him into his bed on a Thursday morning. By >> > Saturday, >> > he was no longer talking coherently, could not control bodily functions >> > and >> > basically just lay in his bed and slept. He died at 1:30 a.m. on the >> > next >> > Monday morning. >> > >> > Hospice supplied me with medications to dry up secretions to keep him >> from >> > choking; to help his body relax and not struggle and to lessen any >> anxiety >> > he might be experiencing but was unable to tell me about. He died very >> > peacefully, but it was very ugly as soon as he passed. I knew what to >> > expect because the Hospice Nurses had prepared me before hand, but it >> > was >> > still hard to see. During the time in the hospital bed, he talked a lot >> > to >> > someone or something I could not see. He talked to this 'person' and >> > laughed a lot with them. When he got to the point that he didn't even >> > talk >> > to this 'person', he still called my name and was very content as soon >> > as >> >> > I >> > answered him and touched his hand. >> > >> > I played some of our favorite music in the room and turned on the TV to >> > some >> > of his favorite programs when they were on. Family and friends were in >> > and >> > out as they desired. My sisters came on Sunday morning, very early, and >> > stayed until after the funeral home came to take his body away. His >> > mother >> > was with us, but didn't actually stay awake for most of the time. >> > However, >> > she wanted to be there and I felt she had the right to be if she wanted >> > to. >> > He was not combative or ugly in any way. His leaving was exactly as he >> > had >> > requested; at home, quiet, with me and other family at his bedside. >> > There >> > was no wailing when he passed. We cried softly because we knew we would >> > always miss him. However, we also knew his suffering was finally over >> > and >> > for that we were thankful. >> > >> > If you would have any questions whatsoever, please do not hesitate to >> > ask >> > me. I will share any and everything I can with you to help you during >> > this >> > time. I so understand what you are facing. My Mom died in April 2006 >> > and >> > my husband died in Jan 2009. Please know my heart and my prayers are >> > with >> > you and I will help in any way I can. >> >> > >> > Many hugs.............. >> > >> > Diane C from TN >> > >> > http://auntdisexperimentallife.blogspot.com/ >> > >> > >> > >> > >> > >> > >> > On Wed, Jul 21, 2010 at 8:49 PM, ghornet54 >> > <ghornet54@...<ghornet54%40insightbb.com>> >> >> > wrote: >> > >> >> >> >> >> >> I don't know where to start. My mother was diagnosed with cirrhosis of >> >> the >> >> liver last year. She went into the hospital in May because her blood >> >> pressure dropped to 60/40 and she had gained 30 pounds of fluid. She >> >> was >> >> released 10 days later and only lost 5 pounds. >> >> >> >> Now she is just skin and bones. She is getting mean. She was always a >> >> vocal >> >> person, but usually pretty nice, now she is very mean to her sister >> >> who >> >> stays with her while everyone else works. I don't know what to expect >> >> or >> >> >> how >> >> to help. Her Dr. told us she has 6 months to live and I see her going >> >> downhill every day. >> >> >> >> Does anyone know what we can expect to happen. She is now bedridden >> >> and >> >> can't walk. >> >> >> >> >> >> >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 Hi ,  From what I understand, the mood/personality swings are textbook symptoms. My Dad has recently begun to have them, and boy are they severe! I empathize with you! >> > >> >> >> >> >> >> I don't know where to start. My mother was diagnosed with cirrhosis of >> >> the >> >> liver last year. She went into the hospital in May because her blood >> >> pressure dropped to 60/40 and she had gained 30 pounds of fluid. She >> >> was >> >> released 10 days later and only lost 5 pounds. >> >> >> >> Now she is just skin and bones. She is getting mean. She was always a >> >> vocal >> >> person, but usually pretty nice, now she is very mean to her sister >> >> who >> >> stays with her while everyone else works. I don't know what to expect >> >> or >> >> >> how >> >> to help. Her Dr. told us she has 6 months to live and I see her going >> >> downhill every day. >> >> >> >> Does anyone know what we can expect to happen. She is now bedridden >> >> and >> >> can't walk. >> >> >> >> >> >> >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 Thanks for the info. Her mood swings are very bad now. She also forgets a lot of things. She remembers things that happened years ago, but not things that are recent. My aunt said she has begun talking to someone who isn't in the room, but I talked to her last night and she was in a good mood and remembered things that I said on Sunday. It just seems to come and go. I apologize if I'm " talking " too much, but just want to learn what's happening to her. She goes back to the Dr. Aug 5th, but doesn't want to go. We will probably have to make her go, which will be a chore!!!! She grabs onto the side of her bed and won't let go. Re: My Mother To: livercirrhosissupport > Hi , > > From what I understand, the mood/personality swings are textbook > symptoms. My Dad has recently begun to have them, and boy are > they severe! I empathize with you! > > > >> > > >> >> > >> >> > >> >> I don't know where to start. My mother was diagnosed with > cirrhosis of > >> >> the > >> >> liver last year. She went into the hospital in May because > her blood > >> >> pressure dropped to 60/40 and she had gained 30 pounds of > fluid. She > >> >> was > >> >> released 10 days later and only lost 5 pounds. > >> >> > >> >> Now she is just skin and bones. She is getting mean. She > was always a > >> >> vocal > >> >> person, but usually pretty nice, now she is very mean to > her sister > >> >> who > >> >> stays with her while everyone else works. I don't know > what to expect > >> >> or > >> > >> >> how > >> >> to help. Her Dr. told us she has 6 months to live and I > see her going > >> >> downhill every day. > >> >> > >> >> Does anyone know what we can expect to happen. She is now > bedridden > >> >> and > >> >> can't walk. > >> >> > >> >> > >> >> > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 Thanks Diane. It's very hard letting go! I talked to her last night and she seemed in good spirits. I know she will be in a better place and free from pain, but it's still hard to let her go. Re: My Mother >> >> To: >> >> >> livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> >> <livercirrhosissupport%40yahoogroups.com> >> >> >> >> > Hi , >> >> > >> >> > From what I understand, the mood/personality swings are textbook >> >> > symptoms. My Dad has recently begun to have them, and boy are >> >> > they severe! I empathize with you! >> >> > >> >> > >> >> > >> > >> >> > >> >> >> >> > >> >> >> >> > >> >> I don't know where to start. My mother was diagnosed with >> >> > cirrhosis of >> >> > >> >> the >> >> > >> >> liver last year. She went into the hospital in May because >> >> > her blood >> >> > >> >> pressure dropped to 60/40 and she had gained 30 pounds of >> >> > fluid. She >> >> > >> >> was >> >> > >> >> released 10 days later and only lost 5 pounds. >> >> > >> >> >> >> > >> >> Now she is just skin and bones. She is getting mean. She >> >> > was always a >> >> > >> >> vocal >> >> > >> >> person, but usually pretty nice, now she is very mean to >> >> > her sister >> >> > >> >> who >> >> > >> >> stays with her while everyone else works. I don't know >> >> > what to expect >> >> > >> >> or >> >> > >> >> >> > >> >> how >> >> > >> >> to help. Her Dr. told us she has 6 months to live and I >> >> > see her going >> >> > >> >> downhill every day. >> >> > >> >> >> >> > >> >> Does anyone know what we can expect to happen. She is now >> >> > bedridden >> >> > >> >> and >> >> > >> >> can't walk. >> >> > >> >> >> >> > >> >> >> >> > >> >> >> >> > >> > >> >> > >> > >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 hi thomas, i am beverly from tx.i was diagnosed with cirrhosis due to alcohol.in 2008 my world was a wreck i was hospitalized 3 times in less then 2 mos.i then they started talking transplant i was on overload i shut down for the 1st 5mos.did leave my house i was on a real pitty party i was sober for t hat 5 mos then my dr tells me i need to go to outpatient drug rehab for a month and meetings all the time i attempted suicide a couple times i prayed for god to take me some reason i kept going in and out of the hosp.drs put me on all kinds of meds.so i decided i did want to live so i have been on the tp list since dec.2009 there are days i don't want to move.so i finally found some web sites and i am trying to learn as much as i can.and every time i write on a suport group web site i feel like i am talking to the only friends i have because they know how i feel.the liver center here as a liver suport group.once a month i wish more often.my husband has not been to any meetings its like i really am fighting this all alone.well thats my story.just always remember i am always here to listen. god bless. your new friend bev, tx ________________________________ To: livercirrhosissupport Sent: Fri, July 30, 2010 4:21:53 PM Subject: Re: My Mother dear Diane, you are the gift to us all, i try to read every post on hep c, so i can better understand it and the pain that come with it. i have to share this with you and the rest. every time i get transfused or go to the emergency room my mind click the wrong way with thoughts... i try not to think of what would happen to my parent or the people that really love me if i did something stupid like suicide. i wish i knew how to explain hepc to my parents but i don't. i was in so much pain last week, it felt like my body was falling apart. (smile " men cry in the dark) when we don't know what to do. it seems that woman are able to express themselves to each other but us men, " it another story. " i don't have that many male friends only one in Ohio, if it wasn't for talking almost 6 hours on the phone i don't think i would be here to day. my friend to me is a blessing from god. he really listen to me without interruption waited and explain to me what he would do and what i must do and was to put all my faith in god.. through prayer i felt better. i recently made an appointment to speak with the head doctor' " oh how i wish there was a support group here " where we could share thought on how each other is coping with this sometime fatal diease. having someone to talk to is a life saver. The hospital i go to (university of Illinois at Chicago,) dont have a hepC support group. i want to form such a group but i dont know where to start " . how can i form support group for cirrhosis patients?, i don't know how to read my own chart, the majority of good understanding information i got was from here. I want to personally thank each and every one of you who post here, your post means a lot to the patient who dont have a super understaning of what is going on. " You guys are my family. Diane, you are the greatest, i am so glad that i found you. all right enough from the windy city, always, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 , I hope I didn't make it sound as though I thought it would or should be easy. It is the single hardest thing I have ever done or ever expect to do. As human beings, we are wired to want those we love to be with us always. I don't honestly think we ever really get ok with letting them go. But, from experience, I can say it does somehow get a bit easier as they grow nearer the end. Grace is such an amazing and awesome experience in every facet of our life. It is no less so when we are faced with saying 'see you later " to our loved ones. I continue to pray for you . I pray for peace and strenght; for comfort and reassurance from our Lord. May you feel His presence ever more closely to you. Many hugs................ Diane C from TN http://auntdisexperimentallife.blogspot.com/ > > > Thanks Diane. > > It's very hard letting go! I talked to her last night and she seemed in > good > spirits. I know she will be in a better place and free from pain, but it's > still hard to let her go. > > > > > Re: My Mother > >> >> To: > >> >> > >> livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> > <livercirrhosissupport%40yahoogroups.com> > >> <livercirrhosissupport%40yahoogroups.com> > >> >> > >> >> > Hi , > >> >> > > >> >> > From what I understand, the mood/personality swings are textbook > >> >> > symptoms. My Dad has recently begun to have them, and boy are > >> >> > they severe! I empathize with you! > >> >> > > >> >> > > >> >> > >> > > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> I don't know where to start. My mother was diagnosed with > >> >> > cirrhosis of > >> >> > >> >> the > >> >> > >> >> liver last year. She went into the hospital in May because > >> >> > her blood > >> >> > >> >> pressure dropped to 60/40 and she had gained 30 pounds of > >> >> > fluid. She > >> >> > >> >> was > >> >> > >> >> released 10 days later and only lost 5 pounds. > >> >> > >> >> > >> >> > >> >> Now she is just skin and bones. She is getting mean. She > >> >> > was always a > >> >> > >> >> vocal > >> >> > >> >> person, but usually pretty nice, now she is very mean to > >> >> > her sister > >> >> > >> >> who > >> >> > >> >> stays with her while everyone else works. I don't know > >> >> > what to expect > >> >> > >> >> or > >> >> > >> > >> >> > >> >> how > >> >> > >> >> to help. Her Dr. told us she has 6 months to live and I > >> >> > see her going > >> >> > >> >> downhill every day. > >> >> > >> >> > >> >> > >> >> Does anyone know what we can expect to happen. She is now > >> >> > bedridden > >> >> > >> >> and > >> >> > >> >> can't walk. > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > >> > > >> >> > >> > > >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 , I am so thankful you had a friend to turn to. Sometimes the only thing that can bring us through it that human contact. I'm happy to know you're pressing forward and insisting to see a doctor that can offer you help and hope. You hang in there!!!! I am praying for you! Many hugs.............. Diane C from TN http://auntdisexperimentallife.blogspot.com/ > > > dear Diane, > > you are the gift to us all, i try to read every post on hep c, so i can > better understand it and the pain that come with it. > > i have to share this with you and the rest. every time i get transfused > or go to the emergency room my mind click the wrong way with thoughts... i > try not to think of what would happen to my parent or the people that > really love me if i did something stupid like suicide. > > i wish i knew how to explain hepc to my parents but i don't. > i was in so much pain last week, it felt like my body was falling apart. > > (smile " men cry in the dark) when we don't know what to do. > it seems that woman are able to express themselves to each other but us > men, " it another story. > > " i don't have that many male friends only one in Ohio, if it wasn't for > talking almost 6 hours on the phone i don't think i would be here to day. > my friend to me is a blessing from god. he really listen to me without > interruption waited and explain to me what he would do and what i must do > and > was to put all my faith in god.. through prayer i felt better. > > i recently made an appointment to speak with the head doctor' " oh how i > wish there was a support group here " where we could share thought on how > each other is coping with this sometime fatal diease. > > having someone to talk to is a life saver. The hospital i go to > (university of Illinois at Chicago,) dont have a hepC support group. > i want to form such a group but i dont know where to start " . > how can i form support group for cirrhosis patients?, i don't know how to > read my own chart, the majority of good understanding information i got was > > from here. > > I want to personally thank each and every one of you who post here, your > post means a lot to the patient who dont have a super understaning of what > is going on. " You guys are my family. Diane, you are the greatest, i am so > glad that i found you. all right enough from the windy city, always, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 Diane, I never thought you meant it was easy! I know it had to be the hardest thing to do. I'm just not ready. My grandmother, who was one of the most important people in my life, died at 90, but it was sudden. She still wasn't easy to let go, but I knew she had a long and full life. My mother also has had a full life, but I'm not quite ready. I hope and pray that when the time comes, I will tell her to go on home. Thanks for your insight and help. I can't tell you how much it means to hear what others have gone thru and I'm now going thru parts of it with more to come. She absolutely refuses to go to the Dr. next week. She's almost out of pain pills and I don't know if he will give her more unless she comes in. She can't walk nor sit up for long. It's about 30 minutes from her house to the Dr and she usually has to wait for 20 minutes and another 10 or 15 in the exam room. She said she can't sit for that long. We can only get her up for 3-5 minutes at a time. I will find out on Monday. Thanks for your insight. Re: My Mother >> >> >> To: >> >> >> >> >> livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> >> <livercirrhosissupport%40yahoogroups.com> >> >> <livercirrhosissupport%40yahoogroups.com> >> >> >> >> >> >> > Hi , >> >> >> > >> >> >> > From what I understand, the mood/personality swings are textbook >> >> >> > symptoms. My Dad has recently begun to have them, and boy are >> >> >> > they severe! I empathize with you! >> >> >> > >> >> >> > >> >> >> > >> > >> >> >> > >> >> >> >> >> > >> >> >> >> >> > >> >> I don't know where to start. My mother was diagnosed with >> >> >> > cirrhosis of >> >> >> > >> >> the >> >> >> > >> >> liver last year. She went into the hospital in May because >> >> >> > her blood >> >> >> > >> >> pressure dropped to 60/40 and she had gained 30 pounds of >> >> >> > fluid. She >> >> >> > >> >> was >> >> >> > >> >> released 10 days later and only lost 5 pounds. >> >> >> > >> >> >> >> >> > >> >> Now she is just skin and bones. She is getting mean. She >> >> >> > was always a >> >> >> > >> >> vocal >> >> >> > >> >> person, but usually pretty nice, now she is very mean to >> >> >> > her sister >> >> >> > >> >> who >> >> >> > >> >> stays with her while everyone else works. I don't know >> >> >> > what to expect >> >> >> > >> >> or >> >> >> > >> >> >> >> > >> >> how >> >> >> > >> >> to help. Her Dr. told us she has 6 months to live and I >> >> >> > see her going >> >> >> > >> >> downhill every day. >> >> >> > >> >> >> >> >> > >> >> Does anyone know what we can expect to happen. She is now >> >> >> > bedridden >> >> >> > >> >> and >> >> >> > >> >> can't walk. >> >> >> > >> >> >> >> >> > >> >> >> >> >> > >> >> >> >> >> > >> > >> >> >> > >> > >> >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 I will be praying for the Lord's will regarding her doctor's appointment on Monday. Hang in there ...... Many hugs.............. Diane C from TN http://auntdisexperimentallife.blogspot.com/ > > > Diane, > > I never thought you meant it was easy! I know it had to be the hardest > thing to do. I'm just not ready. My grandmother, who was one of the most > important people in my life, died at 90, but it was sudden. She still > wasn't easy to let go, but I knew she had a long and full life. My mother > also has had a full life, but I'm not quite ready. I hope and pray that > when the time comes, I will tell her to go on home. Thanks for your insight > > and help. I can't tell you how much it means to hear what others have gone > thru and I'm now going thru parts of it with more to come. > > She absolutely refuses to go to the Dr. next week. She's almost out of pain > > pills and I don't know if he will give her more unless she comes in. She > can't walk nor sit up for long. It's about 30 minutes from her house to the > > Dr and she usually has to wait for 20 minutes and another 10 or 15 in the > exam room. She said she can't sit for that long. We can only get her up > for 3-5 minutes at a time. I will find out on Monday. > > Thanks for your insight. > > > > Re: My Mother > >> >> >> To: > >> >> >> > >> >> livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> > <livercirrhosissupport%40yahoogroups.com> > >> <livercirrhosissupport%40yahoogroups.com> > >> >> <livercirrhosissupport%40yahoogroups.com> > >> >> >> > >> >> >> > Hi , > >> >> >> > > >> >> >> > From what I understand, the mood/personality swings are textbook > >> >> >> > symptoms. My Dad has recently begun to have them, and boy are > >> >> >> > they severe! I empathize with you! > >> >> >> > > >> >> >> > > >> >> >> > >> > > >> >> >> > >> >> > >> >> >> > >> >> > >> >> >> > >> >> I don't know where to start. My mother was diagnosed with > >> >> >> > cirrhosis of > >> >> >> > >> >> the > >> >> >> > >> >> liver last year. She went into the hospital in May because > >> >> >> > her blood > >> >> >> > >> >> pressure dropped to 60/40 and she had gained 30 pounds of > >> >> >> > fluid. She > >> >> >> > >> >> was > >> >> >> > >> >> released 10 days later and only lost 5 pounds. > >> >> >> > >> >> > >> >> >> > >> >> Now she is just skin and bones. She is getting mean. She > >> >> >> > was always a > >> >> >> > >> >> vocal > >> >> >> > >> >> person, but usually pretty nice, now she is very mean to > >> >> >> > her sister > >> >> >> > >> >> who > >> >> >> > >> >> stays with her while everyone else works. I don't know > >> >> >> > what to expect > >> >> >> > >> >> or > >> >> >> > >> > >> >> >> > >> >> how > >> >> >> > >> >> to help. Her Dr. told us she has 6 months to live and I > >> >> >> > see her going > >> >> >> > >> >> downhill every day. > >> >> >> > >> >> > >> >> >> > >> >> Does anyone know what we can expect to happen. She is now > >> >> >> > bedridden > >> >> >> > >> >> and > >> >> >> > >> >> can't walk. > >> >> >> > >> >> > >> >> >> > >> >> > >> >> >> > >> >> > >> >> >> > >> > > >> >> >> > >> > > >> >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2010 Report Share Posted August 1, 2010 Hello everyone, Went to my mothers today and had a very bad day! She started crying when I walked in the door. I asked my aunt what was wrong, and she didn't know. My mother was angry with my sister " for not coming when she's called " . We all work and can't just go when she summons us, she doesn't understand or seem to care. I tried to explain it today, but she would have nothing to do with the explanation. She is VERY mean. She wanted her medicine and I was checking to see if it was time and she yelled and beat her fists on the table saying she knows she has to take her medicine and how many she needs. I was asking my aunt and she did need her medicine and I just gave it to her. She's complaining she's in pain all the time and my aunt is writing down the times when she asks for her medicine. It seems to be around every 6 hours. She absolutely refuses to go to the Dr on Thursday. She's almost out of all her medicines. She only takes medicine for pain and a diuretic. We're going to ask for something for her to sleep. She only sleeps a few hours at a time. She's constantly complaining about something or someone. We don't know how to deal with her anymore. I'm now at my wits end and will probably find a nursing home this week. I really don't know what to do! Thanks for listening. By the way, I don't know how I signed in as , but my name is . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Thanks Diane, My sister talked to the Dr today and he said there is nothing else he can do for my mother except make her comfortable. We're calling Hospice tomorrow to see how this needs to be handled. I just spoke to my mother and she's back to her old self. She apologized to my aunt for the treatment she's given her and promised to try harder. The Dr called in her some sleeping medicine to help her sleep along with stronger pain medicine. Hopefully I will know more tomorrow. I just want to THANK everyone on the list for their encourgement. I feel I'm venting my anger to the list, but I don't really mean to, I just don't know where to turn and everyone who has responded has been very understanding. I told my sister about the list and I'm sending her information about signing in. So fair warning, you might get it from both of us! LOL Re: My Mother > , I am so very sorry. Your mother's attitude and lack of > cooperation > and even her combativeness could be due to hepactic encephalopathy. If > she > absolutely refuses to go to her doctor's appointment, admitting her to a > nursing home may be your only option at this point. Were it me, I would > probably try an ER visit and have her admitted by a doctor's orders. > Then, > you can always say it was the doctor's orders and not the fault of you or > your sibling(s). This worked very well for my sisters and I and my Dad > when > we had to take my Mom's car keys from her. She was mad at the doctor for > a > long time, but it saved us all a lot of heartache. If you could find a > nursing home that deals with Alzheimer's patients, I would think they > would > be the most skilled in handling someone with these type dementia > complications. I know your Mom doesn't have Alzheimer's, but the dementia > caused by encephalopathy can often mimic it very closely. Although > lactulose or other meds can help with the encephalopathy, getting her take > the medication may be a problem within itself. Again, a brief stay in a > hospital could provide some much needed room for clearer thinking and more > time for decision making. Please know I am praying for your Mom and you > and > your family. I did not face this particular problem, but I know it must > be > devastaing for all of you. The closest I came was when my husband called > me > 'one ignorant woman' when I was trying to help him set down in his chair > without crawling over the arm. That was only days before he passed. > Again, > I am praying for all of you. > > Many hugs................ > > Diane C from TN > http://auntdisexperimentallife.blogspot.com > > > > > > > >> >> >> Hello everyone, >> >> Went to my mothers today and had a very bad day! She started crying when >> I >> walked in the door. I asked my aunt what was wrong, and she didn't know. >> My mother was angry with my sister " for not coming when she's called " . We >> all work and can't just go when she summons us, she doesn't understand or >> seem to care. I tried to explain it today, but she would have nothing to >> do >> >> with the explanation. >> >> She is VERY mean. She wanted her medicine and I was checking to see if it >> was time and she yelled and beat her fists on the table saying she knows >> she >> has to take her medicine and how many she needs. I was asking my aunt and >> she did need her medicine and I just gave it to her. She's complaining >> she's in pain all the time and my aunt is writing down the times when she >> asks for her medicine. It seems to be around every 6 hours. She >> absolutely >> refuses to go to the Dr on Thursday. She's almost out of all her >> medicines. >> >> She only takes medicine for pain and a diuretic. We're going to ask for >> something for her to sleep. She only sleeps a few hours at a time. She's >> constantly complaining about something or someone. We don't know how to >> deal with her anymore. I'm now at my wits end and will probably find a >> nursing home this week. >> >> I really don't know what to do! >> >> Thanks for listening. >> >> By the way, I don't know how I signed in as , but my name is >> . >> >> >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2010 Report Share Posted August 4, 2010 Yesterday was another bad day for my mother, she was in a real bad mood. She was complaining about the pain and I told her I would call 911 and have them come and get her to take her to the hospital. She refused and I said I would pick her up and put her in the car and take her myself. She said she would call the police and have me arrested. I wasn't concerned about that, but didn't really want to make her do something she doesn't want to do right now. Today was a good day for my mother. She was in a real good mood and was her old self! She was talking and laughing like normal. My neice is an EMT and she said my mother's eyes and skin is yellow. The dr called in her some sleeping medicine and increased her pain meds to every 4 hours. Haven't heard back from Hospice yet, but they said the Dr has to tell them she has less than a year to live and then they can help. It just seems like a lot of red tape! I will take all the good days I can get now. I'm just hoping for more to come. I just don't see how she can hold on for much longer. She's asking to see all her grand children, one at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2010 Report Share Posted August 4, 2010 Hi : Do you or any of your relatives have power of attorney for your mother? Just wondering. When my husband was having one of his episodes of elevated ammonia level he thought he was fine and didn't need to go to the hospital. I called 911 and had to beg and plead with the emt's to take him to the hospital or he would go into a coma and die. One of them said to me " maybe that's what he wants. "  Needless to say, I was aghast! As soon as we got his ammonia down I got an attorney to come to the hospital and have us sign papers giving me power of attorney to make healthcare and legal decisions for him. Since then I had no more trouble with the emt's. He's post-transplant now and doing well. When I think of the times he could have died before his time. Yikes! Jackie Subject: Re: My Mother To: livercirrhosissupport Date: Wednesday, August 4, 2010, 10:37 PM  Yesterday was another bad day for my mother, she was in a real bad mood. She was complaining about the pain and I told her I would call 911 and have them come and get her to take her to the hospital. She refused and I said I would pick her up and put her in the car and take her myself. She said she would call the police and have me arrested. I wasn't concerned about that, but didn't really want to make her do something she doesn't want to do right now. Today was a good day for my mother. She was in a real good mood and was her old self! She was talking and laughing like normal. My neice is an EMT and she said my mother's eyes and skin is yellow. The dr called in her some sleeping medicine and increased her pain meds to every 4 hours. Haven't heard back from Hospice yet, but they said the Dr has to tell them she has less than a year to live and then they can help. It just seems like a lot of red tape! I will take all the good days I can get now. I'm just hoping for more to come. I just don't see how she can hold on for much longer. She's asking to see all her grand children, one at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2010 Report Share Posted August 5, 2010 Hi Jackie, Yes, both my sister and I have power of attorney for my mother in both financial and medical. I'm also on her checking account to pay her bills. That was why I wasn't concerned about her calling the police. Re: My Mother > To: livercirrhosissupport > Date: Wednesday, August 4, 2010, 10:37 PM > > > > > > > Yesterday was another bad day for my mother, she was in a real > bad mood. > She was complaining about the pain and I told her I would call > 911 and have > them come and get her to take her to the hospital. She refused > and I said I > would pick her up and put her in the car and take her myself. > She said she > would call the police and have me arrested. I wasn't concerned > about that, > but didn't really want to make her do something she doesn't want > to do right > now. > > Today was a good day for my mother. She was in a real good mood > and was her > old self! She was talking and laughing like normal. My neice is > an EMT and > she said my mother's eyes and skin is yellow. The dr called in > her some > sleeping medicine and increased her pain meds to every 4 hours. > Haven't > heard back from Hospice yet, but they said the Dr has to tell > them she has > less than a year to live and then they can help. It just seems > like a lot > of red tape! > > I will take all the good days I can get now. I'm just hoping for > more to > come. I just don't see how she can hold on for much longer. > She's asking > to see all her grand children, one at a time. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2010 Report Share Posted August 5, 2010 That's good, . One less headache you have to worry about in what is a most stressful time. Hoping you are having a good day. There are good days and bad days. Cherish the good ones and may they give you strength to cope with the bad ones. Praying for you, Jackie > > > > Subject: Re: My Mother > To: livercirrhosissupport > Date: Wednesday, August 4, 2010, 10:37 PM > > > > > > > Yesterday was another bad day for my mother, she was in a real > bad mood. > She was complaining about the pain and I told her I would call > 911 and have > them come and get her to take her to the hospital. She refused > and I said I > would pick her up and put her in the car and take her myself. > She said she > would call the police and have me arrested. I wasn't concerned > about that, > but didn't really want to make her do something she doesn't want > to do right > now. > > Today was a good day for my mother. She was in a real good mood > and was her > old self! She was talking and laughing like normal. My neice is > an EMT and > she said my mother's eyes and skin is yellow. The dr called in > her some > sleeping medicine and increased her pain meds to every 4 hours. > Haven't > heard back from Hospice yet, but they said the Dr has to tell > them she has > less than a year to live and then they can help. It just seems > like a lot > of red tape! > > I will take all the good days I can get now. I'm just hoping for > more to > come. I just don't see how she can hold on for much longer. > She's asking > to see all her grand children, one at a time. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2010 Report Share Posted August 5, 2010 Hey everyone, I received a call from my sister and my mother isn't doing well. I went out there tonight and she's in a lot of pain. I'm calling the Dr tomorrow to get Hospice started. Her eyes are yellowing and her skin is yellow. She has a bad odor. Not body odor, but another odor. I wanted to call 911, but she's insisting that she stay at home. I offered to call the Dr to have him increase her pain meds, but she insisted that it was after hours and didn't want to bother him. She's in and out of her mind. She quite lucind at times and then at other times, it's as if she's not there. Thanks for the shoulder to cry on!!! Re: My Mother > To: livercirrhosissupport > Date: Wednesday, August 4, 2010, 10:37 PM > > > > > > > Yesterday was another bad day for my mother, she was in a real > bad mood. > She was complaining about the pain and I told her I would call > 911 and have > them come and get her to take her to the hospital. She refused > and I said I > would pick her up and put her in the car and take her myself. > She said she > would call the police and have me arrested. I wasn't concerned > about that, > but didn't really want to make her do something she doesn't want > to do right > now. > > Today was a good day for my mother. She was in a real good mood > and was her > old self! She was talking and laughing like normal. My neice is > an EMT and > she said my mother's eyes and skin is yellow. The dr called in > her some > sleeping medicine and increased her pain meds to every 4 hours. > Haven't > heard back from Hospice yet, but they said the Dr has to tell > them she has > less than a year to live and then they can help. It just seems > like a lot > of red tape! > > I will take all the good days I can get now. I'm just hoping for > more to > come. I just don't see how she can hold on for much longer. > She's asking > to see all her grand children, one at a time. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2010 Report Share Posted August 5, 2010 I'm praying for you and your mother. That smell is part of the 7 hells of liver disease. I pray that hospice come fast. I do not think you are equipped for this. When my loved one Ardis died, she required an army of hospice workers. At one point, every CNA available was attending her. I felt a sense of pride and comfort watching them fawn and smother her with TLC. They can change the sheets with only a minimal amount of disturbance to the patient. God be with you. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Thu, August 5, 2010 7:13:08 PM Subject: Re: My Mother Hey everyone, I received a call from my sister and my mother isn't doing well. I went out there tonight and she's in a lot of pain. I'm calling the Dr tomorrow to get Hospice started. Her eyes are yellowing and her skin is yellow. She has a bad odor. Not body odor, but another odor. I wanted to call 911, but she's insisting that she stay at home. I offered to call the Dr to have him increase her pain meds, but she insisted that it was after hours and didn't want to bother him. She's in and out of her mind. She quite lucind at times and then at other times, it's as if she's not there. Thanks for the shoulder to cry on!!! Re: My Mother > To: livercirrhosissupport > Date: Wednesday, August 4, 2010, 10:37 PM > > > > > > > Yesterday was another bad day for my mother, she was in a real > bad mood. > She was complaining about the pain and I told her I would call > 911 and have > them come and get her to take her to the hospital. She refused > and I said I > would pick her up and put her in the car and take her myself. > She said she > would call the police and have me arrested. I wasn't concerned > about that, > but didn't really want to make her do something she doesn't want > to do right > now. > > Today was a good day for my mother. She was in a real good mood > and was her > old self! She was talking and laughing like normal. My neice is > an EMT and > she said my mother's eyes and skin is yellow. The dr called in > her some > sleeping medicine and increased her pain meds to every 4 hours. > Haven't > heard back from Hospice yet, but they said the Dr has to tell > them she has > less than a year to live and then they can help. It just seems > like a lot > of red tape! > > I will take all the good days I can get now. I'm just hoping for > more to > come. I just don't see how she can hold on for much longer. > She's asking > to see all her grand children, one at a time. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2010 Report Share Posted August 6, 2010 , I pray you have already been in touch with Hospice and the assesment visit has been arranged. I may have said this before, but if your Mom doesn't want to leave home, my advise would be to keep her there and allow her to anwser her call in the peace of her own home. Even with Hospice help, it won't be easy, but you and your siblings can do it. If Hospice there is just half as good as what I had here, they will be a godsend to you. They will maintain the contact with her doctor, but before and after hours. They will guarantee she has pain relief and is as comfortable as humanly possible during her transition. Let them help you as well. Our team was wonderful with Terry, but with me as well. They cared for him with love and compassion and professionalism. They also took time to sit and visit with me, to answer questions or just to let me cry and release the emotions. When we needed meds STAT and no one was close by, they would call the meds in to our local pharmacy and my brother-in-law would go pick them up. I never had to pay on penny, the meds were always charged to the Hospice account. My husband was on Medicare and they covered Hospice at 100%. Please know I continue to pray for you, for your Mom and for all of your family. As much as I know you all love her, I know too that you don't want her to continue to suffer. Lean on each other and trust the Lord; He is the only one who really understands you and the only one who give you the peace you so desperately need in this time of your life. Many hugs.......................... Diane C from TN hppt://auntdisexperimentallife.blogspot.com/ > > > Hey everyone, > > I received a call from my sister and my mother isn't doing well. I went out > there tonight and she's in a lot of pain. I'm calling the Dr tomorrow to get > Hospice started. Her eyes are yellowing and her skin is yellow. She has a > bad odor. Not body odor, but another odor. I wanted to call 911, but she's > insisting that she stay at home. I offered to call the Dr to have him > increase her pain meds, but she insisted that it was after hours and didn't > want to bother him. She's in and out of her mind. She quite lucind at times > and then at other times, it's as if she's not there. > > Thanks for the shoulder to cry on!!! > > > > > Re: My Mother > > To: livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> > > Date: Wednesday, August 4, 2010, 10:37 PM > > > > > > > > > > > > > > Yesterday was another bad day for my mother, she was in a real > > bad mood. > > She was complaining about the pain and I told her I would call > > 911 and have > > them come and get her to take her to the hospital. She refused > > and I said I > > would pick her up and put her in the car and take her myself. > > She said she > > would call the police and have me arrested. I wasn't concerned > > about that, > > but didn't really want to make her do something she doesn't want > > to do right > > now. > > > > Today was a good day for my mother. She was in a real good mood > > and was her > > old self! She was talking and laughing like normal. My neice is > > an EMT and > > she said my mother's eyes and skin is yellow. The dr called in > > her some > > sleeping medicine and increased her pain meds to every 4 hours. > > Haven't > > heard back from Hospice yet, but they said the Dr has to tell > > them she has > > less than a year to live and then they can help. It just seems > > like a lot > > of red tape! > > > > I will take all the good days I can get now. I'm just hoping for > > more to > > come. I just don't see how she can hold on for much longer. > > She's asking > > to see all her grand children, one at a time. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2010 Report Share Posted August 6, 2010 i am so sorry bobby that you are having to go thru this. but you are doing the best you can and you can feel proud of that. god bles you and your family bev, tx ________________________________ To: livercirrhosissupport Sent: Thu, August 5, 2010 10:36:51 PM Subject: Re: My Mother I'm praying for you and your mother. That smell is part of the 7 hells of liver disease. I pray that hospice come fast. I do not think you are equipped for this. When my loved one Ardis died, she required an army of hospice workers. At one point, every CNA available was attending her. I felt a sense of pride and comfort watching them fawn and smother her with TLC. They can change the sheets with only a minimal amount of disturbance to the patient. God be with you. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Thu, August 5, 2010 7:13:08 PM Subject: Re: My Mother Hey everyone, I received a call from my sister and my mother isn't doing well. I went out there tonight and she's in a lot of pain. I'm calling the Dr tomorrow to get Hospice started. Her eyes are yellowing and her skin is yellow. She has a bad odor. Not body odor, but another odor. I wanted to call 911, but she's insisting that she stay at home. I offered to call the Dr to have him increase her pain meds, but she insisted that it was after hours and didn't want to bother him. She's in and out of her mind. She quite lucind at times and then at other times, it's as if she's not there. Thanks for the shoulder to cry on!!! Re: My Mother > To: livercirrhosissupport > Date: Wednesday, August 4, 2010, 10:37 PM > > > > > > > Yesterday was another bad day for my mother, she was in a real > bad mood. > She was complaining about the pain and I told her I would call > 911 and have > them come and get her to take her to the hospital. She refused > and I said I > would pick her up and put her in the car and take her myself. > She said she > would call the police and have me arrested. I wasn't concerned > about that, > but didn't really want to make her do something she doesn't want > to do right > now. > > Today was a good day for my mother. She was in a real good mood > and was her > old self! She was talking and laughing like normal. My neice is > an EMT and > she said my mother's eyes and skin is yellow. The dr called in > her some > sleeping medicine and increased her pain meds to every 4 hours. > Haven't > heard back from Hospice yet, but they said the Dr has to tell > them she has > less than a year to live and then they can help. It just seems > like a lot > of red tape! > > I will take all the good days I can get now. I'm just hoping for > more to > come. I just don't see how she can hold on for much longer. > She's asking > to see all her grand children, one at a time. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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