this is a nightmare

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moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 8/12/2009 3:52 AM (GMT -7)   
shakehead  Moonroe here, I havent posted in a while.Husband has been in the hospital 3 times in the last 4 weeks.The last stay was 12 days.He just came home yesterday. He was in the hospital for amonia levels for 4 days ,came home on Wed and had to call EMS on Thursday.I had to take my mother to Duke and when I got home he had been bleeding and didnt tell anyone. When I walked to the bathroom with him he just fell out and started bleeding from the rectum all over the floor.Sorry to be so graphic,but these are the things that happen with this disease.I really thought he was going to die right then. He was in ICU for 5 days and in a regular room for 7. I have to tell you ,a varices bleed is a very scary thing. Well he survived this second bleed and is back home. I dont think this is where he should be but apparently I dont have a say so. I just do all of the work. The doctors have told me so many conflicting stories.I t has been an emotional roller coaster. First they say he wont make it out of ICU , Then they say he is no longer a candidate for the transplant and hospice will have to step in. Then hospice is not longer in the picture and they want to put him in  in patient rehabilitation for 2 weeks so he can get stronger before he comes home. They give him the choice,and of course he decides to come home. That leaves me with the responsiblity of  helping him up and down,he now uses a walker becvause he is so weak. He has to have 24 hours of care and I have to find someone to help watch him while I go to work. I get no sleep because he is up and down all nite and cant do  anything by himself. His doctor said his chances for transplant are 10 to 20 percent and that is on the high side. I dont want him to give up hope,but at some point we have to be realistic here. My husband still wants to go ahead with all of the counseling and tests at unc and I can hardly get him in and out of the car. It seems everytime he goes into the hospital he comes out a whole lot worse than before.I dont think I can continue to to do this. I have one meltdown after another and it is taking its toll on me.I really dont know what to do. Please I need  a voice. thanks mimi

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/12/2009 5:09 AM (GMT -7)   

Ohhh Mimi,  I am so sorry.  You must be worn to a frazzle. 

It's time to start recharging your batteries.   Take a little time here an there for you.   I am not talking about hours and hours.   I use to go for walks around our property.  I helped calm me down and cleared my head.   Take bubble baths or read magazines.  Just anything that you like, to take your mind off of your reality for brief periods of time.   For your own good and your husbands,  you need to take care of yourself too.  If you get sick, you will be no help to him. 

Did the doctor ask you how you were going to manage his care when he came home?   Maybe you need to call him and have a long chat with him.   Ask him the prognosis.  If it is less than 6 months or maybe a year, hospice can be called in.  I called them in for my husband and most recently for my brother.........they are a wonderful organization. 
 
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.


moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 8/12/2009 5:58 AM (GMT -7)   
Pink Grandma, That is the funny thing about all of this. Hospice came in and talked to us while he was in the hospital. They told us that he was no longer a candidate for the transplant and that he could live any where from 3 months to a year. But as you know this disease dictates itself. No one knows what will happen from day to day. His doctor tried to get him into in patient rehab for 2 weeks but all my husband could see was that he wanted to go home. There are just to many things that I cant do. I cant lift him.I am only 110 lbs and he is just dead weight. I definetly cant get him in the shower chair. I think I will try to get patient care service to come in a couple of hours a day at least to get him bathed. I dont know what else to do. He really should not be at home,but he will not listen to me and is oblivious to the amount of work it puts on me. He really needs around the clock care,and I just can not do all of it. Mimi

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/13/2009 4:53 AM (GMT -7)   
Hello Sissabelle,   I have alerted the administrator.   Please read over our forum rules.  Especially rule number 5.  This site is not for selling anything. 
 
Advertising or Spam is defined as posting a link for the purpose of selling, soliciting or promoting by someone that has ownership or other "vested interest" to the web site involved, including efforts to promote other online forums or web sites by web site owners. 


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.


moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 8/13/2009 4:59 AM (GMT -7)   
Thanks Pink Grandma,I was trying to figure out what the heck that was

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/18/2009 7:43 PM (GMT -7)   
Moonroe,

I am so sorry you are having such a hard time!!! Believe me, there are many of us caregivers here that know what you are goin through. PG is right, you really need to take some time for yourself. Because, if you do not care for yourself, how are you going to care for him?? I recently took a trip for a few days (1st break I have taken since my husband's diagnosis in 2004) and let me tell you, it did me a world of wonders!!! I am not saying to go away, but even just a quick break to have a meal with a friend, take a long walk, curl up with a movie or book you like, etc.....you need this!! You hang in there, prayers headed your way!

Mer
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