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Post by Onomatopoeia on Feb 28, 2014 22:50:47 GMT
Hospice just left. She said I couldn't do anything to help him survive. Said he's too far gone.
I guess I needed permission to let go and not fail him. She even said he could have beer if he wanted it. I'm glad he turned it down.
She said he will most likely go into a coma. He won't suffer much. I'm surprised how quickly he is becoming week. He doesn't have the strength to pull himself up in bed.
I'm so glad he won't suffer. He may just fall asleep and not even have to bother with tears and good byes.
I've accepted it. She said he may stay in denial stage through death. She said he's still in denial and may just remain there.
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moon head
New Member
aggressive hostile
Posts: 19 
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Post by moon head on Feb 28, 2014 23:03:22 GMT
This is the time to have those last conversations, apologies and coming to terms.
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Post by Deceived Wife on Feb 28, 2014 23:23:59 GMT
I too have accepted my husbands fate and I know that I can't do anything to stop it. That doesn't mean the pain will be any less. Hugs Ono
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Post by Onomatopoeia on Mar 1, 2014 0:05:42 GMT
We tried today. He said he doesn't like talking about it. I'm just going to lie next to him as he is very clingy when he is healthy and feels insecure when I'm far from him. I'll take good gentle care of him.
I smile and treat him sweetly when he dresses strangely or thinks a box of crackers are doggie diapers.
The nurse said he is in denial and will probably not move onto the other stages of grief and loss before he passes.
I can't believe how quickly his muscles have turned flaccid and lost mass.
Joe said to me, "I'm a f@ck up, ain't I?" I said, "no, you're not, Joe." We all mess up sometimes.
It seems giving him xifaxin is just prolonging his suffering.
I just tell him how handsome he is and how much I have always appreciated his strength and his providing and hard work and sense of humor and smile and laugh..
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Post by Onomatopoeia on Mar 1, 2014 0:07:29 GMT
I'm tired, DW. I'm glad you are younger than I. Thanks for the hugs. Yep. I guess my lesson here is to let doctors be doctors and I should just be a wife. Being a wife means allowing him to determine his own future.
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Post by needhelp on Mar 1, 2014 15:50:45 GMT
I'm so sorry to hear about your husbands prognosis. At least you know what to expect. It sounds as if your both at peace about this.
I've had problems with my brother for the past couple of days. He has been throwing up and can't keep his lactulose down. Today he seems better.
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Post by Onomatopoeia on Mar 1, 2014 17:48:33 GMT
Thanks. He is slipping so fast. Now I see neurological damage concurred by his nurse. He has a lot of Parkinson' s like symptoms. Hallucinations also.
So yell don't call ems when he vomits? I may have called too much. Vomiting would have certainly scared me. Glad he's doing better.
I hate this horrible disease. I was afraid of becoming an alcoholic my whole life and refused to drink one single drop until I met Joe. I see now that he liked the drink. If I could have gotten him a transplant, he would have began drinking again. The monster wouldn't have left his body along with the old liver.
I'm at peace with it now. People who weren't very verbal before must have known it was best as they are very supportive at my acceptance of the truth.
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Post by Onomatopoeia on Mar 1, 2014 18:01:29 GMT
Although I'm sad and still angry that he won't be here, I'm very relieved that I've accepted this. I guess I needed permission from an authority on the situation. Looking back, it's been me fighting vigilantly.to save his life in spite of his reckless choices. Maybe when he said he didn't want to go to the hospital he was trying to articulate that he wanted the illness to take its course. Maybe he's been trying to let go for a long time. If that were the case I wish he could have told me. But he isn't exactly.known for his honesty. His actions are closer to the truth than his words.
I'm very tired.
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Post by Deceived Wife on Mar 1, 2014 18:57:06 GMT
I'm so sorry to hear about your husbands prognosis. At least you know what to expect. It sounds as if your both at peace about this. I've had problems with my brother for the past couple of days. He has been throwing up and can't keep his lactulose down. Today he seems better. It's been a long rough 8 months, with lots of research. For a long time I was in denial and fought the truth; almost like I was living in a bubble. It was my own doctors who helped me to talk about it and understand that I can't stop this. I had to learn to give it to the powers that be. We know what to expect because we did our own research, these liver docs don't seem to want to go into the gory details; at least the one's I've encountered. Perhaps it's because they have a relationship with him, they like him and maybe it's too much for them to discuss the truth. Where as my doctors are my doctors and they are trying to prepare me by being as honest as they can with the info I share with them. I'm sorry to hear that your brother is having difficulty keeping his lactulose down. That's NOT good!! If it keeps up, get him to the ER even if he seems fine. It takes but a few moments to go from functional to being in real danger. 24 hours before my husband was on life support, he was dancing, laughing and swimming in the Caribbean sea. We were on vacation celebrating our anniversary and came home to hell. 6 hours after the flight landed I found him in a pool of blood. The only preceptor was some lethargy. You will also begin to notice some subtle changes in your brothers personality, demeanor, slurring of words, confusion..... when that happens ER asap; if he is cooperative. Don't be surprised if he becomes hostile with you; if so.... get to a safe place and call 911. We've been there and done that. |
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Post by Onomatopoeia on Mar 1, 2014 19:35:48 GMT
How soon do you get to see palliative care in your home?
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Post by Deceived Wife on Mar 2, 2014 14:28:48 GMT
How soon do you get to see palliative care in your home? I'm not sure. First the VA Doc has to see him..... and this morning I woke up to his wedding ring on my desk. He hasn't worn it in months but I'm confused why it is now has been returned. I'm heading out the door to work and don't have time to deal with this now. |
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Post by Onomatopoeia on Mar 2, 2014 16:08:20 GMT
I didn't know you were working. That has to be awful. While you are at work he could be home tearing your lives to pieces. I hope your time at work gives you respite rather than causing any more duress.
At least he is communicating. If he wanted a divorce he would just file. I think putting the ring there is just a bluff or an attempt to control you with fear. Let us know how it goes. He, sadly, only communicates with negativity.
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Post by needhelp on Mar 2, 2014 18:55:59 GMT
Turns out my brother had a 24 hour flu type thing. He actually seems to be much more with it today. Also, we got a letter from the hospital that says we are going to be interviewed to get into a transplant program. My brother understands this will be a long haul, but isn't sure what he will have to do. I am ecstatic! Whatever it takes to save his life, I'll do it. We have good insurance, so it all depends on what the doctors say after examining him. They mentioned possible treatment for his Hep C, if his liver isn't too far gone. I am so filled with hope! Not only that, my brother remembered to take his lactulose today, without me reminding him.
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Post by Deceived Wife on Mar 2, 2014 21:03:55 GMT
Turns out my brother had a 24 hour flu type thing. He actually seems to be much more with it today. Also, we got a letter from the hospital that says we are going to be interviewed to get into a transplant program. My brother understands this will be a long haul, but isn't sure what he will have to do. I am ecstatic! Whatever it takes to save his life, I'll do it. We have good insurance, so it all depends on what the doctors say after examining him. They mentioned possible treatment for his Hep C, if his liver isn't too far gone. I am so filled with hope! Not only that, my brother remembered to take his lactulose today, without me reminding him. Excellent news!!!!!!!!!!!!!!!! I'm so happy to hear this and I'm so happy for you both!!! |
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Post by Onomatopoeia on Mar 2, 2014 21:05:15 GMT
That's good news. So is he still pretty sharp? I'm glad you are elated. I remember that stage. It's a perfect stage to get ahead of what's to come and prevent some of what happens later if hepatic encephalopathy (HE) become a problem.
If you like, I will share with you some of the things I wish I'd known along with possible solutions you may consider along with your own ideas to make it easier and more successful for both of you.
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