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moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 8/25/2009 3:10 AM (GMT -7)   
good morning, I haven't updated lately.It has been very hectic around here.My husband doctor says his chances of transplant are now about 5 percent.He came home from hospital last Tuesday,and hospice started coming on Friday.They come about 4 hours everyday.They help some but it is weird having a strange person in the house. I will get used to it. I just don't think they are as careful with him as I am. They have cut back most of his meds, and he doesn't eat but a spoonful of food a day. How long can someone go without eating. It has been about a month since he has really eaten anything. I noticed that he becomes more confused at times.THis morning he got out of bed by himself and was on his way to the bathroom. It was a good thing I heard him. He said he had a report to do and that I should go get the paperwork.I got him on the couch and now he is sleeping. Last nite he thought his doctor called and he was supposed to go in to the hospital because of infection. He is taking rifaximan and that has kept the encephalopathy at bay. I dont want to give him lactulose because it gives him diarreha and then he will get dehydrated. Oh my goodness,not sure what to do. I feel like I am just watching him fade away and it breaks my heart. He is supposed to go for a paracentisis on Thursday but I am not sure how I am going to get him from the house to the car.It should be interesting. It seems everyone has lost all hope including him.I wonder everyday how much longer will this suffering go on for everyone involved with this awful disease.It just takes its toll on everyone and it is so sad.It scares me because I don't know what to expect now. Will it be days, weeks , months how long can this go on?

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 8/25/2009 3:21 AM (GMT -7)   
ah sweetie i feel for you i really do. it is hard watching someone you love suffer so much. there is no set time for this to go on as everyone is different. just remember to take care of yourself so you dont get sick. if you get sick you are not gonna be much help to your hubby. take some time to yourself, take a walk, read a book just remember to stay healthy. we are here for you and there are some wonderful people on this site. i dont know what i would have done without them. my mom has hep c and i came on here looking for answers on how to help my mom and thanks to these guys i knew what questions to ask and what meds to ask for and got my moms blood levels on a decent level. they can help you to.

BarbL64
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 8/25/2009 11:36 AM (GMT -7)   
I'm sorry that you are struggling so. It takes alot of courage to be the caregiver.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 8/25/2009 1:23 PM (GMT -7)   
Moonroe, I am so very sorry that you have to go through this. There is no reprieve sometimes from the worry and stress of watching a loved one suffer. As much as I hate to say this I think you are actually suffering more than your husband. When they have the brain fog associated with end stage liver disease they aren't in tune with their surroundings at all. Like you said he is having some delusions and that seems to be pretty common. When they are in that state they truly believe that what they think is going on is true. Like with the report he thought was due. It is real to him. The only consolation is that at that moment he is not conciously suffering. You are suffering when you see all this. As far as when this all will end there is no set time or day. The body can go quite awhile without food. If he is drinking fluids then he is being hydrated to some degree, if not then he will continue to worsen more rapidly. I am glad that hospice is involved. They are absolutely wonderful. The nurses can answer many of your questions so don't be afraid to ask. If you are home when hospice is there I would suggest that you take that time for you. Take a nap and catch up on your sleep, take a nice bubble bath, or just go into another room and rest. You will no help to him if you are worn out. We are here for you and will help you in any way that we can.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 8/25/2009 3:56 PM (GMT -7)   
shelly i love your quote by the way. where did you get it? can i share it with my mom and others

and to the poster how is your hubby doing?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/25/2009 10:58 PM (GMT -7)   
cry I am so sorry. I truly understand your fears and pain.

God does not give you anymore than you can handle.........Hold on to that thought.........It was my mantra when I was going through my husband's last weeks....You have gotten through a lot of tough times already.....you can get through this too.

Is it a nurse from hospice that is there everyday or a volunteer? Ask his nurse what she thinks.........they deal with end of life all the time........She can probably give you an educated guess.........they are pretty good at it.

Moonroe.... Worriedgirl and Shelly are absolutely right........Take advantage of the time when you have hospice there........Get in some ME time. You don't have to leave the house or yard to do it. I wore a path around our property when I had people over to be with him. It help to calm me down and think better....

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.


moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 8/26/2009 3:50 AM (GMT -7)   
Thank you all for your support.I think I figured out part of the problem with me.I have always been someone who takes charge and fixes things. I cannot fix this.I have no control and it drives me crazy. I will take everyones advice and take everyday as it comes,and hope and pray there will be another.I read Johns letter for caregivers and it tore me all to pieces. What I would give to get a hug or touch again from my husband.I miss it so much.I really do try to remember all of the great and wonderful moments we had in the last 20 years. Maybe,just maybe there will be a miracle and he will come back from this.You never know. Miracles can happen.I am hopeful anyway. Love and well wishes to all Mimi(moonroe)
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