Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? He doesn't seem to want to be helped, or to be treated!!!! I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 you can't make him take care of himself and you worrying yourself sick..I said this to my husband about him medsthat he was in charge of talking care of him self ,,you have to decide to live or die. My hubby had heart problem and he did very well0f course of course i would remind him..BTW I am the one with cirrhosis;;Does any one have constipation then diarrhea? I been having pain bloated and uncomfortable feeling in my stomach ;;is this what happen.. Annie > To: livercirrhosissupport > From: kbealdailey@... > Date: Mon, 27 Feb 2012 04:47:23 +0000 > Subject: At a Loss > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > ------------------------------------ > > Group Email: livercirrhosissupport > web address: > http://groups.yahoo.com/group/livercirrhosissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Boy, am I ever feeling your pain and what I want to say, will not be positive!! You should just go back to your usual routine!! Yes, you love him dearly; but, he doesn't love himself. Or the will to fight, is gone. Your children need you. Your life is calling. If I may suggest something to help you. Look up the nearest Hospice and go to talk to them. I did it last week and it was sooo comfortable and yet, it was just an intake visit!! They do counseling, as well as the palliative care, in or out of the home. Perhaps it's time to get hubby to the Hospice Society and I'm sure they can do a whole lot, about everything. Some folks may misunderstand my decision with the cancer. But, it is mine!! I've been telling people, that I am probably the healthiest cancer patient they'll meet. Dr sent me for all kinds of blood tests. What came back took 3 pages. In every spot, I was right between the lows and highs. Kim, my husband did something that became obvious, after the fact. He was acting like an evil twin!! My husband would not put everything on the line while, I was sick. The last time I saw him was when he gave me a much wanted coat for my birthday in Nov.  On the day before Christmas, he passed away. Turns out he had very bad lung cancer, in both lungs. He was a jackass to me from the beginning of 2010, thru my liver resection and then I left him and came out here to the RV Park. It was either one of two things. He was a man that absolutely could not fathom wasting away. I think he new what was wrong and wanted me out of the way. Or the lung cancer had moved to the brain, which it does. However, he died in the hospital and sort of in his sleep. Apparently, his kids were stunned when a nurse produced a " Do Not Resuscitate " order. They sure didn't know their Dad, if they wouldn't expect it. He always did say that he would die before me, even though I had the problems. Guess he was right and even though he's gone, I hate saying that. Gloria ________________________________  I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? He doesn't seem to want to be helped, or to be treated!!!! I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hi, i hav just been through this transition with my brother and my advice is that you have to get back to your usual life along with supporting your relative. You will start to do less which you shouldnt feel guilty about, as you need to also think about your iwn health and how your affecting the rest of your family! My brother is still with us and never takes any advice from us, he does what he wants which is usually not the right way to help his condition. We all support him to the hilt and at the same time we are living our normal lives, not easy, but you can. Just remember, this condition changes them and you will be dealing with someone who is not acting like their normal self, good luck... Sent from my iPhone > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 yes, my husband has the constipation one day and the next the diarrhea problem. He was taking Bisacody from the Dr for the constipation but didn't help any and started to take milk of magnesia which he thought works better. His stomach is upset too alot and takes pepto bismol for that. Back and forth it seems from one to the other. Has alot of back pain and takes morphine for the pain but some days that doesn't take care of it. Subject: RE: At a Loss To: " liver cirrhosis support " <livercirrhosissupport > Date: Monday, February 27, 2012, 12:03 AM  you can't make him take care of himself and you worrying yourself sick..I said this to my husband about him medsthat he was in charge of talking care of him self ,,you have to decide to live or die. My hubby had heart problem and he did very well0f course of course i would remind him..BTW I am the one with cirrhosis;;Does any one have constipation then diarrhea? I been having pain bloated and uncomfortable feeling in my stomach ;;is this what happen.. Annie > To: livercirrhosissupport > From: kbealdailey@... > Date: Mon, 27 Feb 2012 04:47:23 +0000 > Subject: At a Loss > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > ------------------------------------ > > Group Email: livercirrhosissupport > web address: > http://groups.yahoo.com/group/livercirrhosissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Dear Kim. It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. I cannot overstate how important it is for you to try to get some. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Sunday, February 26, 2012 9:47 PM Subject: At a Loss  I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? He doesn't seem to want to be helped, or to be treated!!!! I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 I can't just go on with my life, I tried. I left him almost a year ago, because he wouldn't stop drinking...after his diagnosis. I have tried to separate myself from him. But he won't loosen the reigns, and i am not forcing him to do so. I am the only one he will listen to when it comes to going to the hospital, or taking his meds, or anything else dealing with his health, and then only sometimes...usually when he is suffering so bad he can't take it anymore. He just lays on the couch and sleeps. Nothing more. I go over and make sure he has food he should be eating, his meds filled and in the weekly dispensary, that he is bathing, and basic care. He would NEVER let hospice people come in. I think because of how things went with his sister, he knows that i can and will take care of him until the end, so he is depending on me for that. I don't really mind. I love him so much and would do anything for him. But it is just getting to the point where i feel like i am not helping him live, but rather helping him die. And not necessarily in the good way either. I feel so selfish right now. I hate to look at him this way. He seems just a shell of the man i've known. He has lost so much weight, his stomach is so bloated he looks 9 months pregnant, he is yellow (kind of like an umpaloompa, but yellow and not orange <humor helps me sometimes>), his veins in his stomach are so prominent now. I've never seen anything like this. It's like this for me: if i don't do everything, then i am doing nothing...and i will have let him die slowly, painfully, and lonely. I can't do that to him, or to myself. And i kind of hate myself for feeling this way. I know things will never be like they were. I know he will never be healthy again. I just want so badly for him to not suffer anymore. And for him to care enough about his family to just fight a little. That part makes me angry. > > > > Dear Kim. > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > I cannot overstate how important it is for you to try to get some. Love, Bobby > > ________________________________ > > To: livercirrhosissupport > Sent: Sunday, February 26, 2012 9:47 PM > Subject: At a Loss > > >  > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 Dear Kim, reading this is like going back to 2006 in a time warp. I want to stress that after going through what you are going through, I strongly advise that you consider a skilled nursing facility or inpatient hospice. At the very least, you must make sure that you have a filled out form stating you as your husband's medical proxy. There may come a point when he will no longer be capable of making any decisions in his own care. This could be a living nightmare for you. He might not ever let hospice " people " in your home, but dying of liver disease was very very painful for my loved one, and we would not have taken the easy and humane road without morphine. Love, Bobby http://sweetlorrane.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Monday, February 27, 2012 10:33 PM Subject: Re: At a Loss  I can't just go on with my life, I tried. I left him almost a year ago, because he wouldn't stop drinking...after his diagnosis. I have tried to separate myself from him. But he won't loosen the reigns, and i am not forcing him to do so. I am the only one he will listen to when it comes to going to the hospital, or taking his meds, or anything else dealing with his health, and then only sometimes...usually when he is suffering so bad he can't take it anymore. He just lays on the couch and sleeps. Nothing more. I go over and make sure he has food he should be eating, his meds filled and in the weekly dispensary, that he is bathing, and basic care. He would NEVER let hospice people come in. I think because of how things went with his sister, he knows that i can and will take care of him until the end, so he is depending on me for that. I don't really mind. I love him so much and would do anything for him. But it is just getting to the point where i feel like i am not helping him live, but rather helping him die. And not necessarily in the good way either. I feel so selfish right now. I hate to look at him this way. He seems just a shell of the man i've known. He has lost so much weight, his stomach is so bloated he looks 9 months pregnant, he is yellow (kind of like an umpaloompa, but yellow and not orange <humor helps me sometimes>), his veins in his stomach are so prominent now. I've never seen anything like this. It's like this for me: if i don't do everything, then i am doing nothing...and i will have let him die slowly, painfully, and lonely. I can't do that to him, or to myself. And i kind of hate myself for feeling this way. I know things will never be like they were. I know he will never be healthy again. I just want so badly for him to not suffer anymore. And for him to care enough about his family to just fight a little. That part makes me angry. > > > > Dear Kim. > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > I cannot overstate how important it is for you to try to get some. Love, Bobby > > ________________________________ > > To: livercirrhosissupport > Sent: Sunday, February 26, 2012 9:47 PM > Subject: At a Loss > > >  > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > > > > > > Dear Kim. > > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > I cannot overstate how important it is for you to try to get some. Love, Bobby > > > > ________________________________ > > From: momakimi <kbealdailey@> > > To: livercirrhosissupport > > Sent: Sunday, February 26, 2012 9:47 PM > > Subject: At a Loss > > > > > >  > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > > > He doesn't seem to want to be helped, or to be treated!!!! > > > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 *hug* Kim, I wish I could give you that. You're doing so great under all this pressure and stress. You're a great wife and a wonderful mother. You're being so tough whenever he cannot, and I know it's hard to do that whenever someone doesn't seem to be in that mindset for themselves. It's an insidious disease that really causes a lot of pain and trauma. I would do look into care as Bobby suggested or even enlist friends/family to help you look into it or help. Is that an option? Some people might think that it is " giving up " but it's not - if you're running so long at such a high rate in this kind of situation, you need all the support you can get for you and your children because this affects the whole family. You need some time for you, even if it's a short shower, and that's not selfish - you have two other lives depending on you. I had to explain this to my mom and my brother about hospice or other in home care isn't " giving up "  it's helping us help dad, and finally dad agreed. Unfortunately, we only had in-home care two weeks before he passed to help administer the meds and help with dressing the wounds from draining and other medical things, and hospice was called in whenever he slipped into the coma. During my dad's illness, I had to remember to take it one day at a time, one thing at a time. I have a child of my own, and I know there were points I felt like I had no time to process what was going on or waxing between that and just being so pissed off and waning back to being sad. Even if you just need to write to the group to get things off of your chest, do it. We have your back.  Sincerely, E. Bassett >________________________________ > >To: livercirrhosissupport >Sent: Wednesday, February 29, 2012 2:25 PM >Subject: Re: At a Loss > > > >He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. > >There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > >> > >> > >> > >> > Dear Kim. >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. >> > I cannot overstate how important it is for you to try to get some. Love, Bobby >> > >> > ________________________________ >> > From: momakimi <kbealdailey@> >> > To: livercirrhosissupport >> > Sent: Sunday, February 26, 2012 9:47 PM >> > Subject: At a Loss >> > >> > >> >  >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? >> > >> > He doesn't seem to want to be helped, or to be treated!!!! >> > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? >> > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. >> > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 Thank you so much, all of you! Kim > >> > > >> > > >> > > >> > Dear Kim. > >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > >> > I cannot overstate how important it is for you to try to get some. Love, Bobby > >> > > >> > ________________________________ > >> > From: momakimi <kbealdailey@> > >> > To: livercirrhosissupport > >> > Sent: Sunday, February 26, 2012 9:47 PM > >> > Subject: At a Loss > >> > > >> > > >> >  > >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > >> > > >> > He doesn't seem to want to be helped, or to be treated!!!! > >> > > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > >> > > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > >> > > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Kim I was more than usual, a looney on my last post. I know now what happened. My Pharmacist checked my meds and said, I see that the Dr has increased your sleeping pill. Well, it made perfect sense then. The only nights that I had taken 2 pills instead of 1-1/2 were the 2 nights before the 2 looney days. It takes a whole lot of courage to do what your doing!! Don't ever think you are being selfish. The little piece that I said about my husband was supposed to include, that we had to separate before he died. I had absolutely no warning, or support, when he became his evil twin. In fact, worse than he has ever done in the 21 yrs we'd been together. I'm not going to say that I wish I had handled things different - I didn't because of my own health. Also, I have a belief that he did it on purpose, to a degree. He figured I had enough on my plate with my own cancer, so he pushed me away, so that I wasn't there for his. Some of the folks here remember when I was chattering about what an ass he was being. How was I supposed to know that he had lung cancer a whole lot worse than my liver cancer?? He would never go to a Dr unless I threatened to get his daughter involved and he only found had it confirmed 3 weeks before he died. Well, he certainly did it his way!! If he didn't want me to look after him, then sure as he-- nobody else was going to. Would I have stayed? You bet!! He had done a pretty good job of looking after me going through 2 Hep C treatments, how could I ever do less? It sounds to me like you have made up your mind and it's not from obligation. So, give yourself a whole lot of latitude! Even though I'm the patient in my life, I truly believe that all you caretakers are wonderful angels, sent to even help me. Gloria ________________________________  I can't just go on with my life, I tried. I left him almost a year ago, because he wouldn't stop drinking...after his diagnosis. I have tried to separate myself from him. But he won't loosen the reigns, and i am not forcing him to do so. I am the only one he will listen to when it comes to going to the hospital, or taking his meds, or anything else dealing with his health, and then only sometimes...usually when he is suffering so bad he can't take it anymore. He just lays on the couch and sleeps. Nothing more. I go over and make sure he has food he should be eating, his meds filled and in the weekly dispensary, that he is bathing, and basic care. He would NEVER let hospice people come in. I think because of how things went with his sister, he knows that i can and will take care of him until the end, so he is depending on me for that. I don't really mind. I love him so much and would do anything for him. But it is just getting to the point where i feel like i am not helping him live, but rather helping him die. And not necessarily in the good way either. I feel so selfish right now. I hate to look at him this way. He seems just a shell of the man i've known. He has lost so much weight, his stomach is so bloated he looks 9 months pregnant, he is yellow (kind of like an umpaloompa, but yellow and not orange <humor helps me sometimes>), his veins in his stomach are so prominent now. I've never seen anything like this. It's like this for me: if i don't do everything, then i am doing nothing...and i will have let him die slowly, painfully, and lonely. I can't do that to him, or to myself. And i kind of hate myself for feeling this way. I know things will never be like they were. I know he will never be healthy again. I just want so badly for him to not suffer anymore. And for him to care enough about his family to just fight a little. That part makes me angry. > > > > Dear Kim. > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > I cannot overstate how important it is for you to try to get some. Love, Bobby > > ________________________________ > > To: livercirrhosissupport > Sent: Sunday, February 26, 2012 9:47 PM > Subject: At a Loss > > >  > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 My proxy is part of my Living Will and my son knows exactly where those papers are!! ________________________________  Dear Kim, reading this is like going back to 2006 in a time warp. I want to stress that after going through what you are going through, I strongly advise that you consider a skilled nursing facility or inpatient hospice. At the very least, you must make sure that you have a filled out form stating you as your husband's medical proxy. There may come a point when he will no longer be capable of making any decisions in his own care. This could be a living nightmare for you. He might not ever let hospice " people " in your home, but dying of liver disease was very very painful for my loved one, and we would not have taken the easy and humane road without morphine. Love, Bobby http://sweetlorrane.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Monday, February 27, 2012 10:33 PM Subject: Re: At a Loss  I can't just go on with my life, I tried. I left him almost a year ago, because he wouldn't stop drinking...after his diagnosis. I have tried to separate myself from him. But he won't loosen the reigns, and i am not forcing him to do so. I am the only one he will listen to when it comes to going to the hospital, or taking his meds, or anything else dealing with his health, and then only sometimes...usually when he is suffering so bad he can't take it anymore. He just lays on the couch and sleeps. Nothing more. I go over and make sure he has food he should be eating, his meds filled and in the weekly dispensary, that he is bathing, and basic care. He would NEVER let hospice people come in. I think because of how things went with his sister, he knows that i can and will take care of him until the end, so he is depending on me for that. I don't really mind. I love him so much and would do anything for him. But it is just getting to the point where i feel like i am not helping him live, but rather helping him die. And not necessarily in the good way either. I feel so selfish right now. I hate to look at him this way. He seems just a shell of the man i've known. He has lost so much weight, his stomach is so bloated he looks 9 months pregnant, he is yellow (kind of like an umpaloompa, but yellow and not orange <humor helps me sometimes>), his veins in his stomach are so prominent now. I've never seen anything like this. It's like this for me: if i don't do everything, then i am doing nothing...and i will have let him die slowly, painfully, and lonely. I can't do that to him, or to myself. And i kind of hate myself for feeling this way. I know things will never be like they were. I know he will never be healthy again. I just want so badly for him to not suffer anymore. And for him to care enough about his family to just fight a little. That part makes me angry. > > > > Dear Kim. > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > I cannot overstate how important it is for you to try to get some. Love, Bobby > > ________________________________ > > To: livercirrhosissupport > Sent: Sunday, February 26, 2012 9:47 PM > Subject: At a Loss > > >  > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > He doesn't seem to want to be helped, or to be treated!!!! > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Would Oxycontin work for his pain?? That's the one I've said that I would like. I had it in the hospital and I liked where it put me, at the same time as feel no pain. There is a big push up here to take Oxy off the market because of the addicts that get their hands on it. Can you imagine?? We all have to pay for the stupidity of a few. But, my Dr told me that the name would change and maybe one little ingredient and it will be back. ________________________________  He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > > > > > > Dear Kim. > > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > I cannot overstate how important it is for you to try to get some. Love, Bobby > > > > ________________________________ > > From: momakimi <kbealdailey@> > > To: livercirrhosissupport > > Sent: Sunday, February 26, 2012 9:47 PM > > Subject: At a Loss > > > > > >  > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > > > He doesn't seem to want to be helped, or to be treated!!!! > > > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Dear Kim, as I have said before, there are only two paths that I know of. The transplant path, in which the transplant center does everything they can to help a person stay healthy enough to recieve and keep alive a precious donor liver, and the hospice option. Even though I had previously promised to my loved one Ardis that I would just let her die alone in her apartment, (I even kept her stocked up on the beer and schnapps) I panicked at the last moment, and got her in to see the transplant eval people. Then, after she was not deemed to be a candidate, I asked for a hospice evaluation and had her transfered to a first class inpatient hospice, where they gave her compazine for her nausea, liquid roxynol for her pain, and even one beer for the road (prescribed by a doctor, if you can believe that!), and after 4 days, she passed on over to the other side, as peaceful, warm and safe and dry as can be with liver disease. That last part I included on purpose. There are people here whom have had a successful home " dying phase " events, but I wouldnt recommend it , even with hospice people to assist you. Liver disease greatly affects the platelets in the body and thereby the ability to have blood clot on it's own. Without platelets, it can become a free for all that no one should have to be witness to. On the third day in the hospice, I asked the nurses why Ardis' gums were bleeding, and they said that she probably had gum disease which would beed more and more as her organs shut down...They said that I should pray for death to come quick, and I did, and thankfully she died later on that night without a major bleeding complication. I just didn't need that image in my head , changing the bed sheets was bad enough. Every time she soiled them, the nurses would change hem. She wore out the day shift, and then the night shift on her last day. The night shift became so exausted, that the poor CNA's were nearly in tears. We changed the bed 2 to three time per hour in the last 6! They are big on dignity. It is their mission statement, to provide a person with dignity if nothing else. There is just no way in H E double toothpicks that I could have done this alone for her, and the Poplar Grove nursing home was not an option for us, because they couldn't keep her clean and dry even when she was ambulatory!!(still able to be up on her feet) Without the hospice, she would have not had a dignified, peaceful death, and as they- say you only get one chance to get it right. If you really love this man, please ease his suffering, and give him back his dignity. consult a hospice. It's the only option you have left, and it's the right thing to do... Love, Bobby PS, I apologize for the graffic inferences in this post. I hope that people in this group are not offended, but it wouldn't be very humane for me to know this information and just let grieving family members discover it on their own. ________________________________ To: livercirrhosissupport Sent: Wednesday, February 29, 2012 1:25 PM Subject: Re: At a Loss  He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > > > > > > Dear Kim. > > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > I cannot overstate how important it is for you to try to get some. Love, Bobby > > > > ________________________________ > > From: momakimi <kbealdailey@> > > To: livercirrhosissupport > > Sent: Sunday, February 26, 2012 9:47 PM > > Subject: At a Loss > > > > > >  > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > > > He doesn't seem to want to be helped, or to be treated!!!! > > > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 Bobby I was certainly not offended by your description; but, it was something that I needed to (hear?). Definitely, I do not ever want to put my son or my niece through all of that. So, I thank you!! I do have an appointment with the local Hospice later this month and will be setting up the things we can. Then, when the end is near, please just put a diaper on me. I imagine that Ardis was not aware of course, but as a person who hasn't been there, it doesn't sound very dignified. Gloria ________________________________  Dear Kim, as I have said before, there are only two paths that I know of. The transplant path, in which the transplant center does everything they can to help a person stay healthy enough to recieve and keep alive a precious donor liver, and the hospice option. Even though I had previously promised to my loved one Ardis that I would just let her die alone in her apartment, (I even kept her stocked up on the beer and schnapps) I panicked at the last moment, and got her in to see the transplant eval people. Then, after she was not deemed to be a candidate, I asked for a hospice evaluation and had her transfered to a first class inpatient hospice, where they gave her compazine for her nausea, liquid roxynol for her pain, and even one beer for the road (prescribed by a doctor, if you can believe that!), and after 4 days, she passed on over to the other side, as peaceful, warm and safe and dry as can be with liver disease. That last part I included on purpose. There are people here whom have had a successful home " dying phase " events, but I wouldnt recommend it , even with hospice people to assist you. Liver disease greatly affects the platelets in the body and thereby the ability to have blood clot on it's own. Without platelets, it can become a free for all that no one should have to be witness to. On the third day in the hospice, I asked the nurses why Ardis' gums were bleeding, and they said that she probably had gum disease which would beed more and more as her organs shut down...They said that I should pray for death to come quick, and I did, and thankfully she died later on that night without a major bleeding complication. I just didn't need that image in my head , changing the bed sheets was bad enough. Every time she soiled them, the nurses would change hem. She wore out the day shift, and then the night shift on her last day. The night shift became so exausted, that the poor CNA's were nearly in tears. We changed the bed 2 to three time per hour in the last 6! They are big on dignity. It is their mission statement, to provide a person with dignity if nothing else. There is just no way in H E double toothpicks that I could have done this alone for her, and the Poplar Grove nursing home was not an option for us, because they couldn't keep her clean and dry even when she was ambulatory!!(still able to be up on her feet) Without the hospice, she would have not had a dignified, peaceful death, and as they- say you only get one chance to get it right. If you really love this man, please ease his suffering, and give him back his dignity. consult a hospice. It's the only option you have left, and it's the right thing to do... Love, Bobby PS, I apologize for the graffic inferences in this post. I hope that people in this group are not offended, but it wouldn't be very humane for me to know this information and just let grieving family members discover it on their own. ________________________________ To: livercirrhosissupport Sent: Wednesday, February 29, 2012 1:25 PM Subject: Re: At a Loss  He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > > > > > > Dear Kim. > > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > I cannot overstate how important it is for you to try to get some. Love, Bobby > > > > ________________________________ > > From: momakimi <kbealdailey@> > > To: livercirrhosissupport > > Sent: Sunday, February 26, 2012 9:47 PM > > Subject: At a Loss > > > > > >  > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > > > He doesn't seem to want to be helped, or to be treated!!!! > > > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 You know, Gloria, you would think that she would have been out of it, but despite what the hospice nurses told me- that after 7 hours of agonal breathing, and her physical changes indicting death was imminent,... even after all that, when we went to change the bed the very last time, we rolled Ardis over on her side, thinking that she was out, unconcious, comatose, but she let out a yell, and in the clearest voice ever, said " Nooooooooooooooo! " We were all shocked and dumbfounded. They told me that they had never ever seen that, especially in a liver patient, with tons of morphine on board, only one hour away from death. You just never know. I now know that she could hear every word I said to her in those last hours. I am really glad of it. Love, Bobby  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, March 2, 2012 4:30 PM Subject: Re: At a Loss  Bobby I was certainly not offended by your description; but, it was something that I needed to (hear?). Definitely, I do not ever want to put my son or my niece through all of that. So, I thank you!! I do have an appointment with the local Hospice later this month and will be setting up the things we can. Then, when the end is near, please just put a diaper on me. I imagine that Ardis was not aware of course, but as a person who hasn't been there, it doesn't sound very dignified. Gloria ________________________________  Dear Kim, as I have said before, there are only two paths that I know of. The transplant path, in which the transplant center does everything they can to help a person stay healthy enough to recieve and keep alive a precious donor liver, and the hospice option. Even though I had previously promised to my loved one Ardis that I would just let her die alone in her apartment, (I even kept her stocked up on the beer and schnapps) I panicked at the last moment, and got her in to see the transplant eval people. Then, after she was not deemed to be a candidate, I asked for a hospice evaluation and had her transfered to a first class inpatient hospice, where they gave her compazine for her nausea, liquid roxynol for her pain, and even one beer for the road (prescribed by a doctor, if you can believe that!), and after 4 days, she passed on over to the other side, as peaceful, warm and safe and dry as can be with liver disease. That last part I included on purpose. There are people here whom have had a successful home " dying phase " events, but I wouldnt recommend it , even with hospice people to assist you. Liver disease greatly affects the platelets in the body and thereby the ability to have blood clot on it's own. Without platelets, it can become a free for all that no one should have to be witness to. On the third day in the hospice, I asked the nurses why Ardis' gums were bleeding, and they said that she probably had gum disease which would beed more and more as her organs shut down...They said that I should pray for death to come quick, and I did, and thankfully she died later on that night without a major bleeding complication. I just didn't need that image in my head , changing the bed sheets was bad enough. Every time she soiled them, the nurses would change hem. She wore out the day shift, and then the night shift on her last day. The night shift became so exausted, that the poor CNA's were nearly in tears. We changed the bed 2 to three time per hour in the last 6! They are big on dignity. It is their mission statement, to provide a person with dignity if nothing else. There is just no way in H E double toothpicks that I could have done this alone for her, and the Poplar Grove nursing home was not an option for us, because they couldn't keep her clean and dry even when she was ambulatory!!(still able to be up on her feet) Without the hospice, she would have not had a dignified, peaceful death, and as they- say you only get one chance to get it right. If you really love this man, please ease his suffering, and give him back his dignity. consult a hospice. It's the only option you have left, and it's the right thing to do... Love, Bobby PS, I apologize for the graffic inferences in this post. I hope that people in this group are not offended, but it wouldn't be very humane for me to know this information and just let grieving family members discover it on their own. ________________________________ To: livercirrhosissupport Sent: Wednesday, February 29, 2012 1:25 PM Subject: Re: At a Loss  He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > > > > > > Dear Kim. > > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > I cannot overstate how important it is for you to try to get some. Love, Bobby > > > > ________________________________ > > From: momakimi <kbealdailey@> > > To: livercirrhosissupport > > Sent: Sunday, February 26, 2012 9:47 PM > > Subject: At a Loss > > > > > >  > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > > > He doesn't seem to want to be helped, or to be treated!!!! > > > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 Maybe my chattering all the time will be a good thing. It'll keep me in this world for a time. Of course, I don't believe that; but, I would wonder. ________________________________  You know, Gloria, you would think that she would have been out of it, but despite what the hospice nurses told me- that after 7 hours of agonal breathing, and her physical changes indicting death was imminent,... even after all that, when we went to change the bed the very last time, we rolled Ardis over on her side, thinking that she was out, unconcious, comatose, but she let out a yell, and in the clearest voice ever, said " Nooooooooooooooo! " We were all shocked and dumbfounded. They told me that they had never ever seen that, especially in a liver patient, with tons of morphine on board, only one hour away from death. You just never know. I now know that she could hear every word I said to her in those last hours. I am really glad of it. Love, Bobby   Bobby I was certainly not offended by your description; but, it was something that I needed to (hear?). Definitely, I do not ever want to put my son or my niece through all of that. So, I thank you!! I do have an appointment with the local Hospice later this month and will be setting up the things we can. Then, when the end is near, please just put a diaper on me. I imagine that Ardis was not aware of course, but as a person who hasn't been there, it doesn't sound very dignified. Gloria ________________________________  Dear Kim, as I have said before, there are only two paths that I know of. The transplant path, in which the transplant center does everything they can to help a person stay healthy enough to recieve and keep alive a precious donor liver, and the hospice option. Even though I had previously promised to my loved one Ardis that I would just let her die alone in her apartment, (I even kept her stocked up on the beer and schnapps) I panicked at the last moment, and got her in to see the transplant eval people. Then, after she was not deemed to be a candidate, I asked for a hospice evaluation and had her transfered to a first class inpatient hospice, where they gave her compazine for her nausea, liquid roxynol for her pain, and even one beer for the road (prescribed by a doctor, if you can believe that!), and after 4 days, she passed on over to the other side, as peaceful, warm and safe and dry as can be with liver disease. That last part I included on purpose. There are people here whom have had a successful home " dying phase " events, but I wouldnt recommend it , even with hospice people to assist you. Liver disease greatly affects the platelets in the body and thereby the ability to have blood clot on it's own. Without platelets, it can become a free for all that no one should have to be witness to. On the third day in the hospice, I asked the nurses why Ardis' gums were bleeding, and they said that she probably had gum disease which would beed more and more as her organs shut down...They said that I should pray for death to come quick, and I did, and thankfully she died later on that night without a major bleeding complication. I just didn't need that image in my head , changing the bed sheets was bad enough. Every time she soiled them, the nurses would change hem. She wore out the day shift, and then the night shift on her last day. The night shift became so exausted, that the poor CNA's were nearly in tears. We changed the bed 2 to three time per hour in the last 6! They are big on dignity. It is their mission statement, to provide a person with dignity if nothing else. There is just no way in H E double toothpicks that I could have done this alone for her, and the Poplar Grove nursing home was not an option for us, because they couldn't keep her clean and dry even when she was ambulatory!!(still able to be up on her feet) Without the hospice, she would have not had a dignified, peaceful death, and as they- say you only get one chance to get it right. If you really love this man, please ease his suffering, and give him back his dignity. consult a hospice. It's the only option you have left, and it's the right thing to do... Love, Bobby PS, I apologize for the graffic inferences in this post. I hope that people in this group are not offended, but it wouldn't be very humane for me to know this information and just let grieving family members discover it on their own. ________________________________ To: livercirrhosissupport Sent: Wednesday, February 29, 2012 1:25 PM Subject: Re: At a Loss  He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > > > > > > > Dear Kim. > > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > I cannot overstate how important it is for you to try to get some. Love, Bobby > > > > ________________________________ > > From: momakimi <kbealdailey@> > > To: livercirrhosissupport > > Sent: Sunday, February 26, 2012 9:47 PM > > Subject: At a Loss > > > > > >  > > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > > > He doesn't seem to want to be helped, or to be treated!!!! > > > > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > > > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > > > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2012 Report Share Posted March 5, 2012 Gloria, you can't chatter as much as I did on massive doses of prednisone I never shut up, probably babbled in my sleep. One thing I am sure of, being interested in life has got to make dying easier. If we concentrate on the life we have left rather than on what is dying inside of us, we are going to be distracted, sometimes amused, and any pain won't be as bad as if we were to concentrate on it. Add in a dash or a bucket of humor and life can be good. Jan > Maybe my chattering all the time will be a good thing. It'll keep me in this world for a time. Of course, I don't believe that; but, I would wonder. > > > > ________________________________ > > > > > You know, Gloria, you would think that she would have been out of it, but despite what the hospice nurses told me- that after 7 hours of agonal breathing, and her physical changes indicting death was imminent,... even after all that, when we went to change the bed the very last time, we rolled Ardis over on her side, thinking that she was out, unconcious, comatose, but she let out a yell, and in the clearest voice ever, said " Nooooooooooooooo! " We were all shocked and dumbfounded. They told me that they had never ever seen that, especially in a liver patient, with tons of morphine on board, only one hour away from death. You just never know. I now know that she could hear every word I said to her in those last hours. I am really glad of it. Love, Bobby > > > > > > Bobby > > I was certainly not offended by your description; but, it was something that I needed to (hear?). Definitely, I do not ever want to put my son or my niece through all of that. So, I thank you!! I do have an appointment with the local Hospice later this month and will be setting up the things we can. Then, when the end is near, please just put a diaper on me. I imagine that Ardis was not aware of course, but as a person who hasn't been there, it doesn't sound very dignified. > > Gloria > > ________________________________ > > > Dear Kim, as I have said before, there are only two paths that I know of. The transplant path, in which the transplant center does everything they can to help a person stay healthy enough to recieve and keep alive a precious donor liver, and the hospice option. Even though I had previously promised to my loved one Ardis that I would just let her die alone in her apartment, (I even kept her stocked up on the beer and schnapps) I panicked at the last moment, and got her in to see the transplant eval people. Then, after she was not deemed to be a candidate, I asked for a hospice evaluation and had her transfered to a first class inpatient hospice, where they gave her compazine for her nausea, liquid roxynol for her pain, and even one beer for the road (prescribed by a doctor, if you can believe that!), and after 4 days, she passed on over to the other side, as peaceful, warm and safe and dry as can be with liver disease. That last part I included on > purpose. There are people here whom have had a successful home " dying phase " events, but I wouldnt recommend it , even with hospice people to assist you. Liver disease greatly affects the platelets in the body and thereby the ability to have blood clot on it's own. Without platelets, it can become a free for all that no one should have to be witness to. On the third day in the hospice, I asked the nurses why Ardis' gums were bleeding, and they said that she probably had gum disease which would beed more and more as her organs shut down...They said that I should pray for death to come quick, and I did, and thankfully she died later on that night without a major bleeding complication. I just didn't need that image in my head , changing the bed sheets was bad enough. Every time she soiled them, the nurses would change hem. She wore out the day shift, and then the night shift on her last day. The night shift became so exausted, that the poor CNA's were > nearly in tears. We changed the bed 2 to three time per hour in the last 6! They are big on dignity. It is their mission statement, to provide a person with dignity if nothing else. There is just no way in H E double toothpicks that I could have done this alone for her, and the Poplar Grove nursing home was not an option for us, because they couldn't keep her clean and dry even when she was ambulatory!!(still able to be up on her feet) > Without the hospice, she would have not had a dignified, peaceful death, and as they- say you only get one chance to get it right. If you really love this man, please ease his suffering, and give him back his dignity. consult a hospice. It's the only option you have left, and it's the right thing to do... Love, Bobby > PS, I apologize for the graffic inferences in this post. I hope that people in this group are not offended, but it wouldn't be very humane for me to know this information and just let grieving family members discover it on their own. > > ________________________________ > > To: livercirrhosissupport > Sent: Wednesday, February 29, 2012 1:25 PM > Subject: Re: At a Loss > > > He is allergic to morphine, sadly enough. He is to the point where he is asking for pain medications. Which is odd in itself considering he has such a high pain tolerance. I have a medical power of attorney, statutory durable power of attorney all in place already. > > There is so much to deal with. I just do not know what else i can do for him. Where do i go from here? Do i just let him wither away as the disease progresses? > > >> > >> > >> > >> > Dear Kim. >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. >> > I cannot overstate how important it is for you to try to get some. Love, Bobby >> > >> > ________________________________ >> > From: momakimi <kbealdailey@> >> > To: livercirrhosissupport >> > Sent: Sunday, February 26, 2012 9:47 PM >> > Subject: At a Loss >> > >> > >> >  >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? >> > >> > He doesn't seem to want to be helped, or to be treated!!!! >> > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? >> > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. >> > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 I just want to let y'all know that has been placed on hospice. They brought in all the medical equipment, the medication and send someone daily to help. An NP or RN comes twice weekly to check on him. The relief was so great that I nearly melted down. I couldn't believe how much these people could and would help. My brother and brother in law teamed up and got me the help I desperately needed. We have been told to contact a funeral home soon, that he is gettin very bad. But it seems so contradictory to what I see in him. He has such amazing days of lucidity. Then he just drops off so fast, to a worse place then before his lucid days. It's crazy to see it do him that way. I wanna say thanks to y'all. For the advice on hospice. I think I would have kept going on like I had been until I was beaten down to the point of no return. Things are better for now. He is gettin to the point where he meds 24/7 care, as he falls a lot. Thank you so much! Kim > >> > > >> > > >> > > >> > Dear Kim. > >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > >> > I cannot overstate how important it is for you to try to get some. Love, Bobby > >> > > >> > ________________________________ > >> > From: momakimi <kbealdailey@> > >> > To: livercirrhosissupport > >> > Sent: Sunday, February 26, 2012 9:47 PM > >> > Subject: At a Loss > >> > > >> > > >> >  > >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > >> > > >> > He doesn't seem to want to be helped, or to be treated!!!! > >> > > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > >> > > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > >> > > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 I just want to let y'all know that has been placed on hospice. They brought in all the medical equipment, the medication and send someone daily to help. An NP or RN comes twice weekly to check on him. The relief was so great that I nearly melted down. I couldn't believe how much these people could and would help. My brother and brother in law teamed up and got me the help I desperately needed. We have been told to contact a funeral home soon, that he is gettin very bad. But it seems so contradictory to what I see in him. He has such amazing days of lucidity. Then he just drops off so fast, to a worse place then before his lucid days. It's crazy to see it do him that way. I wanna say thanks to y'all. For the advice on hospice. I think I would have kept going on like I had been until I was beaten down to the point of no return. Things are better for now. He is gettin to the point where he meds 24/7 care, as he falls a lot. Thank you so much! Kim > >> > > >> > > >> > > >> > Dear Kim. > >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > >> > I cannot overstate how important it is for you to try to get some. Love, Bobby > >> > > >> > ________________________________ > >> > From: momakimi <kbealdailey@> > >> > To: livercirrhosissupport > >> > Sent: Sunday, February 26, 2012 9:47 PM > >> > Subject: At a Loss > >> > > >> > > >> >  > >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > >> > > >> > He doesn't seem to want to be helped, or to be treated!!!! > >> > > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > >> > > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > >> > > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Bless you, Kim. I pray that you will have the strength you will need to get through this. hugs, Jackie At a Loss > >> > > >> > > >> > Ãfâ?sÃ, > >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > >> > > >> > He doesn't seem to want to be helped, or to be treated!!!! > >> > > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > >> > > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > >> > > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Kim This means that your husband is at home, dying?? This sounds awful; but, could you tell me more about it as goes. I'd like to know because it will be my turn and I truly do not know if I want to die at home or in the hospital. Probably the hospital because my place is away to small for more than a couple of people. Truthfully, when it gets to that level - I want to know if it could be just my son and I. However, I'm the only parent he's got (his Dad died Christmas Eve 2010). I don't know if it would be easier for him and which way. I will be seeing my hospice counselor on Thursday, so if I remember, I'll ask. ________________________________  I just want to let y'all know that has been placed on hospice. They brought in all the medical equipment, the medication and send someone daily to help. An NP or RN comes twice weekly to check on him. The relief was so great that I nearly melted down. I couldn't believe how much these people could and would help. My brother and brother in law teamed up and got me the help I desperately needed. We have been told to contact a funeral home soon, that he is gettin very bad. But it seems so contradictory to what I see in him. He has such amazing days of lucidity. Then he just drops off so fast, to a worse place then before his lucid days. It's crazy to see it do him that way. I wanna say thanks to y'all. For the advice on hospice. I think I would have kept going on like I had been until I was beaten down to the point of no return. Things are better for now. He is gettin to the point where he meds 24/7 care, as he falls a lot. Thank you so much! Kim > >> > > >> > > >> > > >> > Dear Kim. > >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxy for your husband? Has his doctor qualified him for hospice? Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > >> > I cannot overstate how important it is for you to try to get some. Love, Bobby > >> > > >> > ________________________________ > >> > From: momakimi <kbealdailey@> > >> > To: livercirrhosissupport > >> > Sent: Sunday, February 26, 2012 9:47 PM > >> > Subject: At a Loss > >> > > >> > > >> >  > >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > >> > > >> > He doesn't seem to want to be helped, or to be treated!!!! > >> > > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > >> > > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > >> > > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2012 Report Share Posted April 10, 2012 I will let you know how things go, of course! He has a lot of pain medication, so that makes it easier on him. Someone told me once, on here, how bad it gets, and that it wasn't something dignified. I am starting to see what he meant by that. started coughing up blood clots this morning. I know what causes this. It is still hard to watch and deal with. At this point, this has been one of the scariest things. The worst thing is watching him live so confused all the time. Another thing i have noticed recently is he is getting a lot more combative, which they say happens a lot in ESLD, closer to the end, i think. I hope not to offend or disgust you, any of you. I will tell you what happens, and if you prefer we can communicate quietly, without spreading the nasty details. Unless there are other who just want to know. > > >> > > > >> > > > >> > > > >> > Dear Kim. > > >> > It seems like you are in over your head at this moment, not because you are lacking in any way, but only those who are trained certified nursing assistants, or registered nurses are really equipped to handle this part of advanced liver disease. I had many recources, and it still nearly killed me when Ardis was going through it.. Even if your husband doesnt have insurance, is there a state program for the indigent where you live? In Colorado we have the CICP, or Colorado indigent care program. > > >> > There is a clear path for you and anyone else in your shoes to follow. Liver transplant when possible, and hospice when not possible. Do you have a signed, notarized medical proxyÃÆ'‚ for your husband? Has his doctor qualified him for hospice?ÃÆ'‚ Have you enrolled him in medicaid? If he has no income, and no insurance, he should be qualified for that, and for sure, he should be qualified for SSDI. You need resources. > > >> > I cannot overstate how important it is for you to try to get some. Love, Bobby > > >> > > > >> > ________________________________ > > >> > From: momakimi <kbealdailey@> > > >> > To: livercirrhosissupport > > >> > Sent: Sunday, February 26, 2012 9:47 PM > > >> > Subject: At a Loss > > >> > > > >> > > > >> > ÃÆ'‚ > > >> > I have no idea what to do or what i am doing! The hospital said his liver is leaking....but no one ever said what it was leaking or what, if anything, could be done to stop the leak! The tapped him and sent him home. His acsites is back and worse than the day he was tapped. His jaundice has moved down and is now over his entire body. Has the hospital given up treating him? Have they decided he isn't worth fighting for? > > >> > > > >> > He doesn't seem to want to be helped, or to be treated!!!! > > >> > > > >> > I KNOW I can't force him to be treated, or to take his meds or to eat right, limit his fluid intake...i can't force him to take care of himself. But how do i not try to force it? How do i just give up on him. How do i accept it? > > >> > > > >> > I haven't been to work in two weeks, because i am trying to care for him. I am so frustrated because i feel like i am wasting my time and energy helping someone who doesn't want my help, and who isn't helping them self. > > >> > > > >> > I am sad, heart broken, and scared. I am lost. My heart hurts, it's as if i can feel it breaking in my chest. > > >> > > > >> > > > >> > > > >> > > > >> > Quote Link to comment Share on other sites More sharing options...
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