Dad is so confused and I'm scared...

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siren79
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/4/2008 1:40 AM (GMT -7)   
Hello. I've been using this website as a form of sanity guiding me thru my father's illness. It has been very helpful. My dad was diagnosed with cirrhosis of the liver due to alcohol, but he also has an alpha 1 anti-trypsin defficiency. He has been sober for a year and a half, but was recently admitted to the ICU suffering from pulmonary edema. He was put on a breathing tube and was out for about 6 days. When he woke up he was put on dialysis and had the breathing tube removed, but over the last few days he has become more and more confused, depressed, irritated, and unable to speak. He was to the point that he was even refusing food and water. Today the doctors gave him a feeding tube and tied down his hands just to get him the nourishment he needs. They said he has high ammonia levels and they are giving him medication for that.

I guess the reason why I'm posting is for some reassurance. It's so hard seeing my dad, somebody who is usually very happy, strong and a fighter, not understand what's going on around him and not seem interested in doing what he needs to do to get on the transplant list. He just seems like a completely different person. Could his confusion and depression be caused by hepatic encephalopathy? Is there hope that he will act like himself again?

I'm so emotionally exhausted. I tell my dad I love him each time I leave, but his reply has been "no". I don't understand what's going on in his head. Could he possibly think we don't love him? That we are leaving him there to die? I don't understand. I just want my dad to be able to understand what's going on and understand how much we all love him and that we are fighting for him.

My heart goes out to everybody on this forum. I never would have guessed there are so many people suffering from this disease.

Thanks in advance.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 6/4/2008 3:17 AM (GMT -7)   
siren79

I am so sorry that you and your family are having to deal with the horrid disease. From what I understand high amonia levels can cause the kind of confusion you are dsecribing. There are several caregivers on this site that have first hand information from their own experiences with this that may help you. Just please remember that this is the disease that is talking and actting like this and not your father.

May you and your family find the strength to fight this difficult time.

Lucy

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 6/4/2008 9:33 AM (GMT -7)   
Hi Siren79,
 
Yes, there are a lot of us out here dealing with this and we all support you in your sorrow.  My husband just got out of the hospital because his amonia level was really high, he was so confused and dis-oriented that I rushed him to emergency, the doctor there asked him if he know what year it was and he answered 1990, he also didn't know where he was.  After three day's in the hospital with mega dose's of lactulose he came around, as a care giver I can tell you that when this happen's they don't realize what is happening to them so be patient with him and don't give up!
 
 
 
Judith

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/4/2008 9:59 PM (GMT -7)   
Hi Siren79,

I'm sorry that you have to deal with this disease. All of us here either have it or support someone who has it. I'm writing to reinforce what the others have said.

I suffer from mild encephalopathy (mind fog) caused by moderately high ammonia levels. In my case, I'm a computer network engineer so I can no longer work. I have been told that when I get a liver transplant that my faculties will return and I will very near my old self. In the meantime, Lactulose or Xifaxan (much more expensive) control my ammonia levels to a degree where I can deal with most day-to-day situations and my friends agree that on 'good days' I am pretty much myself. I drop the ball on things that require multiple steps to accomplish and I forget many things. The thought of not being able to come back to a normal self either by these drugs or by the liver transplant would devastate me.

So I think that you can be confident that the symptoms can be managed to a degree that will allow you to be with the father that you know and love. And on the 'bad days' there will be a degree of unpleasantness that you must be ready to brace yourself against. It is common and a part of the disease, not your father.

I wish you and your father well, and urge you to stay in touch with the other caregivers here. Their wisdom and support will be important in your struggle with this disease. I also urge you to read 1Shelly1's thread entitled "Education: Stages of Liver Disease".

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/4/2008 10:12 PM (GMT -7)   
Hello Siren79 so glad you decided to join us.

And that's a big yes...........hepatic encephalopathy can and does make the patient act weird and say things off the wall. They are really not them selves during that time. My husband could not remember half the things he said and did. And I can testify that while they are having a hepatic encephalopathy episode it is a lot harder on the caregiver than the patient. They don't realise what's going on. The caregiver is scared silly and has to deal with it.

You come here anytime to vent or get suggestions.......As you probably already know there's lot of wonderful people here willing to listen or help in anyway they can............

Take care.......thoughts and prayers.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


siren79
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/5/2008 11:58 PM (GMT -7)   
Thank you all so much for responding. My dad was transferred to the hospital that would potentially do the liver transplant. He is receiving dialysis a couple times a day and has been pretty much asleep for the last two days. The nurses say he is aware of his surroundings, but he is not really responding to anyones questions. I'm guessing from the high ammonia levels and maybe the stress of dialysis? I guess to get on the list he needs to pass a psychological evaluation. Clearly he is not able to do that now. I'm just worried about the what ifs. What if he doesn't pass it. I can't even imagine. I asked him last night if he was in any pain and he just muttered that he wants to go home. It broke my heart. Sorry I'm full of emotions right now. Anyways, thank you all again for responding. I've learned a lot from all of you reading all of the posts. My heart goes out to you...

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/6/2008 1:27 AM (GMT -7)   
siren79 Don't worry about the psychological eveluation. The liver transplant Dr.'s know what is going on when it comes to encepalepathy. At least the one I went to understood when I told him I haden't been able to take my lactulose , because we had to travel quite a distance. My ammonia levels had three months earlier been less than 14. When I went in for the eveluation. levels were way over 100. Plus the entire eveluation really takes a toll on you. I (this is my opinion) don't think he will have to go through the entire process. Hope everything is going well. thinking of you and every other person involved in or with someone with this disease.

siren79
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/7/2008 10:07 PM (GMT -7)   
Well, my dad is slowly going down hill.  They did an x-ray of his lungs and it looks as though he may have pneumonia or something else going on, his blood pressure is very very low and made even worse by dialysis causing them to have to treat him with two types of blood pressure medication, his white blood cell count is going up, but they can't find an infection, and he hasn't had a bowel movement in days, so his ammonia levels aren't decreasing.  
 
I'm so afraid.  The doctors have said that he may soon get to the point to where there's nothing more they can do for him since he is in end stage liver failure and also has hepatorenal failure.  I've come to the realization that I need to prepare for the worst, but continue to hope for the best.  He's only 58 and still has so much life left to live. 
 
When my dad was getting dialysis a couple of days ago, there was a guy in the room that was probably 28 or 30.  I felt so bad for him.  I know that there's a plan for everybody, but sometimes it's just not fair.  I keep telling myself that there must be more after this life since this life can be so short.  It's amazing the perspectives that come out of times like these. 
 
Thanks for letting me vent.  My thoughts and prayers to everybody.       

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/8/2008 12:39 AM (GMT -7)   
Hi Siren79,
I just read your post and it is very late, but I wanted to respond. I feel for you and your father and will keep positive thoughts for you both. No matter what the illness, this is a diffulcult time for you both. I cared for my father last year and now my husband and my mother is coming here tomorrow to live with us. I will be her caregiver also.
You can learn all you can, but it is what it is, and all we can do is take the very best care of them that we can. They know how much we love them just because we are there for them and we want to be. I learned this from my Dad. He had a bad stroke which caused multi-infarct dementia. It was hard for both of us, but he always called me his Christmas Angel until the very end. I was born in December. That's why my name is Carol.
My husband has HCV-Chirrosis-Liver Cancer. My mother is wasting from IBS and COPD.
I am 54 and have never had anything like all this going on in my life before. I myself am healthy. I suppose that's why I choose to care for them. I can't imagine being in their shoes. None of us can until we ourselves are there. IDK. I just keep on going on because I love them all so much. They are my family and I will always here for them.

Blessings to your Dad and you Siren79,
Carol


 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/8/2008 10:18 AM (GMT -7)   
sad  hi  siren79,
   I understand what you are going through, i went through the same thing with my father back in 2006 but my father was much older. as his caregiver i felt very helpless, in a years time we were in the hospitals so many times i lost count. just because my father was older he was on top of everything news he read everything he could get his hands on he had a very sharp mind, it was very hard to watch him when his ammiona levels went high, he couldnt hardly talk but he knew want he wanted to say but the words wouldnt come out right and he was aware of this, he was in a coma state a few times when he would come out i would have to explain to him or try and tell him what happen. this disease happen to us all so fast it wasnt funny. the family knows he had it for at least 10 years because his legs would swell up but when he would get up in the morning they would be down that when on for a while i blame them the drs not diagnosed him sooner, he was seeing a gi dr and a internist and he was having some bleeding problems, with all the blood work and gi bleeds you would think they would know something is going on besides he is older. make sure you pressure the drs into answers keep on them. the sad part about it is my father had not drank for at least 26 years no hep other than he work in a chemical factory for 30 years or he took liptor for a while but the internist should have seen something in the blood work one would think then i have wondered about that. my thoughts and prayers are with you and your dad because he is young he is two years older than i m, but it wasnt easy just because my father was older. its a horrible disease and once you go through it with somebody you dearly love or care about you never forget it, it will stay with me forever, but life will go on and the sun will come the next day. you will be strong because you have to for your father. good luck and prayers are with you.
 myfathers child
 annette

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/8/2008 8:59 PM (GMT -7)   
Dan's brother I realize that you were not pushing a certain religion. But you are pushing your belief in NDE. I for one do not believe in it them. I am speaking from my own personal experience. When you keep talking about NDE and keep mentioning Heaven and God that is pushing your beliefs and that is what rule #10 is referring to.
(but the forums should not be used to convert others) You are telling everyone to read certain books that to you prove NDE's. If that is not trying to convert others to your way of thinking I don't know what is.
I do not like censoring anyone but it is my job as a moderator. And I have tried to get you to email me several times so that we didn't have to have this discussion in public. So if you are upset I am sorry.

And I understand that you are trying to comfort them. But when people are going through this they already have their beliefs in what is going to happen with their loved one. People don't go through life with out some kind of belief....whatever it is.

Dan'sbrother you have a wealth of information and experience to share about Hepatitis and liver disease. Please keep your posts related to that.

Take care.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


siren79
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/8/2008 9:23 PM (GMT -7)   
Well, last night my dad's lungs began to fail and I got a call from my mom that they were going to put him back on respiratory support. Then this morning my mom called and said that he wasn't going to make it. His body has completely failed him and was being kept alive by a ventilator. My family and I stayed with him until we could get a priest to give him his last rights (he was catholic) and then we decided to remove the ventilator since there wasn't anything else the hospital could do for him. His eyes were open the whole time and it felt like they were looking at you cause they moved, but in my heart I feel that he left long before he actually died. I held his hand tight the whole time knowing that no matter where he was, he knew we were there and he was loved. I'm pretty numb right now and am not sure if I've accepted it yet or not. I know at any age you feel like your parents are invincible and will be around for ever. I know he is in a better place and I know he is watching over my family and I. Thank you all again for your support. My prayers are with you all and your families.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/8/2008 9:43 PM (GMT -7)   
(((Siren))), Please accept my sincerest condolences. I am sure that he knew that you were there and that he was loved also. What you gave your father.... is probably the hardest gift that a child can give their parent.

Lot's of thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2008 10:38 PM (GMT -7)   

(((((Siren))))  I am so sorry!  However, I'm glad you were able to be there with your father at the end.  May you find peace in the days ahead.

Hugs,

Connie

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


kipper04
New Member


Date Joined May 2008
Total Posts : 17
   Posted 6/9/2008 4:05 AM (GMT -7)   

Siren, I too am sorry as this is the way it happened with my mother. It has been 3 weeks now since they removed her from the ventilator and I know exactly what you are going through, and feeling. It was truely traumatizing to see the last days in that state and I too take comfort in knowing she is in a better place. Although I am not that much ahead of you in terms with coming to deal with losing a parent I just have to believe there are better days ahead.

Kipper


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 6/9/2008 4:21 AM (GMT -7)   
Siren

I am so sorry for the lost of your father. It is so difficult to lose a parent no matter how old you are or what caused their death. I have lost both of my parents and truly understand the heartache it can cause. I know this time is difficult and may you and your family find the strength to move forward.

Lucy

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/9/2008 7:20 AM (GMT -7)   
eyes  so sorry kipper04 an siren79, There are better days ahead it just takes time to go through the grieving process you will have good days and bad, the first holidays were the worst for me. they really are in a better place, i was grieving for my father before he was gone because i knew that i wasnt going to have him for long. You will deal with his passing in your own way. and yes they do know that you are with them every time my son would speak about anything my fathers eyes would move, they know, i was glad to read that you were there. my thoughts and prays are with both of you. good luck to both of you and take care.
 
 myfathers child
 annette

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/9/2008 10:03 PM (GMT -7)   
My deepest sympathies, Siren79.

I truly understand your feelings, as my father passed away last October here at my home with me.
Very, very sad.
My mother arrived last night and she has Hospice today. This is going to be very hard for me again, but I will be here for her, too.

Blessings to you and your family,
Carol
 

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