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I have had it with Encephalopathy!

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Posted 1/5/2007 3:12 PM (GMT 0)
Hello everyone, hope that you are all doing well this morning. As many of you know my husband has been listed for a liver transplant. We have a 10 year old son together. Today was his first day back to school. Michael (son), asked me to write a note to his Teacher today, because he did not want to write about the worst Christmas he has ever had, where other children could see it if they got into his desk. Well, Mark (husband) got very sensitive and even nasty because I wrote the teacher a note. The note was not in specific detail. He told me he felt like I was trying to put a guilt trip on him. Which is not the case. On Christmas Eve and Christmas Day, Mark did go into the extreme stages of encephalopathy, stupors, he ended up falling and breaking a rib, he defecated all over himself, walked around saying NO repeatedly, was combative with me while I cleaned him up several times. As many of you know they can be in states like this for hours and even days and quite frankly it is very traumatizing to anyone that has to be around it especially those who live in the same house and or care for them. The one it is hurting more than anyone in our house is Michael. I really feel like our child can not take much more of this and I don't know what to do! I am finding myself getting resentful, because Mark doesn't have a clue as to what happens when he does this, and he does not want to hear about. He expects everything to be the same when he is back to his old self. I have tried to explain to him, that Michael is only 10 years old, and his trust in his dad is shattered and he does not feel safe or comfortable around him. That Michael does love him, but Michael doesn't want to be around him. I have asked him on many occasions not to be a part in the discipline, because of these issue and he abides, but it only last for a short time. I just don't know how to get Mark to understand the H@##, we go through, or is it he just doesn't care. We have been going through this for over a year now, and I am fed up with it. I have looked in to getting help, but the only way is to pay for a sitter which I can not afford. His medications with the co-pays are eating us up. When he was in the hospital this last time, I asked about respite care and the doctor didn't want that at all, because of all the germs in the facility. He is on my insurance that I carry at work, and to get help I would have to quit working, there is just no way I can quit working. He does not qualify for medicare for another year. I have accepted whatever the outcome is with this disease is what is meant to be. However the issues that present themselves concerning our child is what I find most difficult. Sorry I made this so long but had to get it off my chest.

Teresa

Posted 1/5/2007 6:59 PM (GMT 0)

Hugs Teresa,

Wish I could make it better for you and the rest of us fighting this insideous encaphalopathy. And poor, sweet Michael caught in the middle of this.

I can tell you are at your witts end. It is a blessing that Mark forgets or is unaware of the impact of his encephalopathy. Unfortunately, there is nothing to take the pain away from the loved ones who walk on eggshells and never know from hour to hour whether they will have their family member or a confused, abusive stranger.

I understand your doctor's concern about respilte care; however if you are drowning there may be no option.

Over the past year I've watched you change from wanting Mark to survive whatever the toll to accepting whatever is going to be. I still pray the call will come soon with the new liver for Mark, the transplant will be successful and the worst will beover. But I also know this terrible disease could still claim Mark before this happens or he could reject the liver or be lost to complications of surgery.

You remain in my thoughts and prayers. Never hesitate to tell it like it is. We cannot take your pain away but at least you will know you are not alone.

Blessyou,    

Ma                                                                  

Posted 1/5/2007 8:54 PM (GMT 0)

Ma, I really sometimes wish he knew the impact or he could spent a day with someone like this so he would be more understanding. It just really struck me wrong this morning, when Michael feared going to school, because he knew his teacher was going to have them write about their Christmas, and Mark having the reaction he had over me writing a note to his teacher. Mark, I can see has no idea what this is like to go through this time after time. It does make one resentful, when the person who has caused all the trauma, being very insenstive to other peoples needs. This is not just all about him, his family is hurting and he wants to get nasty about it, when I try to soften it for our son. Michael does deserve to be protected at his young age, his father needs to be more sensitive to his needs instead of being on the defense. I know I am rambling, but I am just so tired of it all.

Teresa

Posted 1/5/2007 9:02 PM (GMT 0)
Teresa,
I do know what you mean about Michael and the toll it takes on children. My children are teenagers but still dont "get it" that Rick is not always in his right mind. They take things personally and with my son,,he gets aggrevated because of how Rick treats me... Rick doesnt see what he does to those around him either,which is part of the reason Ive been considering a seperation myself,,,,,,but one thing that is in the back of my mind,is that my children HAVE learned from all this too,,,,,maybe not easy lessons,but life lessons,,,,,,about compassion,,about sometimes things are just out of your control,,,,and maybe a little bit of self control,,,,,,,,,things that are easy enough to SPEAK about,but actually living through situations like this,,,,will be hard,but will make them stronger,,,I realize that michael is younger then my children,,,maybe put Michael into counseling,,,,,so he can better understand why Dad is doing these things,and how he can cope with this disease better? Maybe ask at the transplant hospital,if there is counseling for children whose parents are ill,,,,,,,,good luck hon,:hugs:
Posted 1/6/2007 4:35 AM (GMT 0)
Teresa, I am so sorry that you are having such a rough time. I go through the same things except we have no kids at home to witness most of the ugly behavior. I really feel for you and Trish also. Trish is right though, Michael will learn some of life's toughest lessons and hopefully grow up to be a better man for it. Life isn't fair! And it sucks big time sometimes. But just keep the faith and God with be with you every step of the way. And so will your cyberspace friends. My thoughts and prayers will be with you..............Pink Grandma
Posted 1/6/2007 7:47 AM (GMT 0)
Honey,

There is no way Mark can see the impact of his behavior on others. He is not himself anymore than if he were possessed by the devil. That doesn't make it any easier on you however. This is a terrible disease; we are all victims of the Encephalopathy.

My heart goes out to you and Trish and all of us who have to watch our loved ones change into something they are not under ordinary circumstances. The uncertainty is overwhelming. But then I read the posts of others who have already lost their loved ones to ESLD to know that at least we have hope for a brighter tomorrow. That may not help you much during these most painful times. The burden is cumulative and we are only human.

I hold you close in my heart,
Ma
Posted 1/6/2007 10:46 PM (GMT 0)
(((Teresa)))

Trish has a very good idea with counseling for Michael. It would give him a place to safely release his fears and frustrations about what is happening to his father and family. If counseling is not affordable, maybe a "big brothers," or "Al-Anon" program for children.

The encepalopathy is the hardest part of this discease, I think. I love the days, like today, when I can see some glimmer of Jim through his mental confusion. I don't think Mark doesn't care about the hell you are going through; I think Mark, like Jim, is incapable of understanding. There is just no way for their brains to bring all the pieces of the puzzle together into a coherent picture and express or show the sympathy, empathy, and love they previously had for their families. They live in their own murky universe; and they are the center of that universe.

My best,

Venita

 

Posted 1/8/2007 3:50 PM (GMT 0)

Thanks everyone, I was having such a "bad" day. Surprisingly Mark gave what I said alot of thought and he apologized for getting upset over the note I wrote the teacher. He said he understood Michael needed someone to be his advocate also.  I just got off work, so I am off to bed for now, will post later.

Hugs,

Teresa

Posted 1/8/2007 10:08 PM (GMT 0)
Teresa,

    I am really glad Mark decided to think about what you said to him.  Though they are confused sometimes, occasionally something does sink in!  I think sometimes too, that they are so wrapped up in their own problems, even without the big E, they forget how their health is affecting others.  I hope your week goes great, for that matter, YOUR WHOLE YEAR goes better:)  take care Teresa

 

Posted 1/9/2007 7:28 AM (GMT 0)
Teresa, I think both you and your son would benefit from counseling of some sort, even if just a support group. Also, how about Hospice respite in your home, even if just for 2 hours once a week. If they can't provide that, perhaps they know of some other agency that can. Or get out the Yellow Pages and look under Social Services.

Regarding the drug expense, please look into the Indigent Drug Program whereby Mark can get his drugs for free if the doctor cooperates.  Here's a link:  http://www.top5plus5.com/Indigent%20Drug%20Programs.html

If the link is against HW policy, then e-mail me at [email protected] for the info.

My thoughts and prayers are with your family.

Hugs,
Connie

Post Edited (hep93) : 1/9/2007 12:34:59 AM (GMT-7)

Posted 1/9/2007 3:58 PM (GMT 0)

Hello to All, I finally got some much needed sleep!! I have got Michael set up with the Big Brother program, will see how that works out for him. He did keep his honor roll status. Mark has been very lucid, and more understanding. I am making an appointment so the doctor can put me on antidepressants, as I know this will help my attitude. I think I have put this off way too long!!! I worry about everybody except myself. Then I blow up!!! It is just so stressful, doing the waiting game and Mark having so many hospitalizations (14 this past year). There is just nothing simple about living with this awful disease.

I do appreciate the support, you have all given me.

Hugs

Teresa

Posted 1/9/2007 5:42 PM (GMT 0)
Hi Teresa,

I'm glad you got some much needed rest; it's amazing what even a few hours of sleep can do to our stressed out, overwhelmed and depressed minds. It's a wise move to look into antidepressants.

Just remember we are all here for you and love you deeply. Don't hesitate to lean on us during the most difficult times and laugh with us during the calmer days.

I'm sure Michael's Big Brother will help him work through his feelings and lonliness. Now do they have Big Sisters for the caregiver? Take care of yourself. You are the roots of the family tree, everyone else gets their strength from you.

Hugs,

Ma

Posted 1/9/2007 10:45 PM (GMT 0)
Teresa,glad Michael is going to be involved with Big Brother,,and Im happy to your going to check on helping yourself,,,i wasnt crazy about antidepressants but I love my atavans,lol ive got alot of reading to do tonight for my classes and my grandson is here so this is fast time on pc,,,,,,Barb,I dont think that link is bad, because it is not in direct competition with HW and you have no vested interest in the site,,,its for information purposes. Take care all
Posted 1/9/2007 11:54 PM (GMT 0)
Hi Teresa, as I was reading your post about your Mark and Michael, it made me feel sad.  But I do agree with Connie that it may be beneficial for both you and Michael to attend some sort of counseling to help get through this.  Even though Mark apologizes, Michael will still remember.  He needs to have someone help him get through it.  I will continue to keep your family in my thought and prayers and hope that Mark will get the call soon so all of this can be over for you guys.  Take care and hold on....it will get better!!!!  Take of Michael!! He needs you now...
Posted 1/10/2007 1:15 AM (GMT 0)
hi teresa, i could see you were really jacked up over the holidays, i just cant even imagine what you and your young son are going through. im glad you got him in big brothers it will do him a world of good, get him out of the house for a while. being as young as he is hes not understanding what the medical part of cirrohsis realy does to his father. at my age it was really hard to see my father not himself. its been three weeks since my father passed and i miss him alot, but i have to be honnest it was for the best my father didnt want to live that way anymore. when you said your husband had 14 hospital stays i just wanted to cry for you, i would say in about 6 months it was at least 8 hospital stays. it comes a time when you have to take care of yourself to, because dont forget you have a young son to take care of yet, and if you get runed down who is going to do it. sometime you need a break even for a day or two. michael is the one that needs you now. so please take care.
hope that liver comes soon i pray.
your family are in my thoughts and heart.

myfathers child
annette
Posted 1/10/2007 6:32 AM (GMT 0)
Hi Teresa,
Keep hanging in there. Hopefully the transplant is just around the corner and things will begin to improve from there.

For now, look after yourself and your young son. I feel desperately sorry for you and Michael. Wish there was something we could do apart from prayers.
Take care.
Marg
Posted 1/12/2007 1:15 AM (GMT 0)

Thank-you Marg and Annette, Michael and I are doing better, emotionally. Mark is just not feeling well, no encephalopathy thank goodness. We are just taking things as they come. The waiting is just a whole different story all together. His doctor is such a caring person, he wants to see Mark with a new liver as much as we do. So we will just keep on praying for the phone call. I appreciate all your support and input. Most of all for listening to me vent!! It helps knowing I am not alone!

Teresa

Posted 1/15/2007 1:22 AM (GMT 0)
HI TERESA, NO YOUR NOT ALONE, BUT IT SEEMS LIKE IT AT THE TIME, A FRIEND OF OURS WHO HAD A LIVER TRANSPLANT BACK IN 1998 IS DOING VERY WELL AND WORKING AS A SUB TEACHER. HE ALSO THOUGHT HE WOULD NEVER GET THAT CALL, BUT HE DID, AND AS SOON AS HE GOT HIS NEW LIVER HE WASNT SWOLLEN ANY MORE AND HIS MUSCLE TONE CAME BACK ALMOST OVER NIGHT. WHAT A DIFFERANT PERSON.
MY THOUGHTS ARE WITH YOU AND MARK AND HOPE YOUR LIVER COMES SOON. TAKE CARE OF YOURSELF TO!!!
MYFATHERS CHILD
ANNETTE
Posted 1/15/2007 2:47 AM (GMT 0)
hi Annette,,could you please not use all caps in your posts? its actually against the forum rules to use all caps because it is considered "yelling" ,,,thanks for your cooperation:) take care
Posted 1/15/2007 3:05 AM (GMT 0)
well,Rick is out of the house. I am feeling alot of mixed emotions right now,from relief to sadness,but I havent cried today at all. He got drunk again yesterday and it just pushed me off the edge. I left with my daughter before he made it back to the house, so no confrontations last night. This morning when I woke up at my best friends house, I had made up my mind,NO more,,,,,,I very calmly told him when I got home ,that there were 2 choices,,he moves or I do. He asked why it had to be only those 2 choices and I said,,,I am done Rick,no more trying to help someone who doesnt want to be helped, no more being blamed for things I did not do, no more shouldering the entire burden as you pick at me and yell over small things,and absolutely NO more drinking in my house. He finally left walking,,,,,,,I know he made it as far as his sisters house,but walked from there too. His life is now in Gods hands and Ricks. I hate that he pushed me into a corner and made me get to this point,but he is no longer my problem. He was very angry when he left,so he may try to cause me problems,,but he has no car so getting around to bother me wont be easy. I tried to be peaceful with him,,,didnt raise my voice once,,just was stern and to the point,,,I offered to give him half of what we have in the house,,,,,split it down the middle,,told him Id make sure he got to his drs appts until he gets a car,,,but he refused,said he wants nothing from me and hates me for doing this...trying to guilt trip me and it didnt work this time...he said,,,,,,,once I leave here I will never come back ,,I looked him in the eyes and said,,,,,,,,thats the whole point Rick,,,,I am done.
I think his anger came in when he looked at me and no tears were in my eyes,no emotion in my voice,and he realized,,,,,,,,that i truely am done. I know that I have not been bad to him,and I also know I do not deserve the treatment I have got from him since summer,when he had the heart attack,,,,,,he seems to truely be bitter because I am not sick,,,,,,but I do feel very sad that I lost the best friend I have ever had...and I will always love him,,,,,but I can not control his actions and I can not deal with the consequences of his actions.....I hope that his family will help him ,but most of them are fed up with him too,and they dont know what is truely going on with him,,,they are in for a rude awakening because he has shut himself off from even his mother since summer,,,,,and they dont know much about his health problems and how to care for him,but he made his decision when he picked up his first beer Sat,,,and now he must live with the effect of that action......:sigh: as must I. For now I will concentrate on doing the best that I can in school and finish raising my teenagers,,,,,no more men in my life,,,for a long,long time,,,if ever....thanks for letting me vent,,,,,,take care
Posted 1/15/2007 2:08 PM (GMT 0)
sorry trish i didnt know that.
annette
Posted 1/15/2007 5:41 PM (GMT 0)
Trish, a big HURRAH to you for standing up for yourself.  You did not cause his cirrhosis or alcoholism and you cannot stop it.  It truly is up to Rick to save himself...if he even wants to.  We who have been here for a while know full well how much emotion, time, and energy you have put into trying to help him--and what you have gotten in return is abuse.  You do not deserve that.  I agree that his getting drunk (or even drinking just one) is a deal breaker.  Not easy to end a relationship--I've been there,  more than once--but it shows that you care about yourself and your kids and don't deserve to live like that.

Now the really hard part:  Don't give in.

My thoughts and prayers are with you.

Hugs,

Connie

Posted 1/15/2007 11:03 PM (GMT 0)

Trish, I know you have been very good to Rick, and have put up with so much abuse from him. We all have our breaking point, just stick to your guns and don't give in. Ending relationships are not easy, I too have been there. I am glad to see you in school, you will be a wonderful teacher one day soon.

Teresa

Posted 1/16/2007 1:18 AM (GMT 0)
Hi Trish,
How brave you are - you know you have done the right thing. As others have said you can't help someone who doesn't want to help himself and there's only so much abuse one person can take.

Hope school is going well. It will keep you busy. One day we'll be able to correspond as fellow teachers - although I may be retired before you start. How long is your course?

Thinking of you.
Marg
Posted 1/17/2007 7:17 AM (GMT 0)
Trish, are you doing okay? I'm concerned about you. Has Rick tried to contact you or come back home?

Please let us know how you are doing.

Hugs,
Connie
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