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julykid
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 7/8/2008 6:52 PM (GMT -7)   
hello to all,
i am still very new to this site but have really found out that there ARE people feeling and going thru the same emotions that i am expericening.  this weekend was not great, my husband has not been feeling well at all.  today was especially bad. my son, who is 13, called me today when i was at work and said that his dad was really saying alot of crazy things.  my kids, 17 and 13, both know what this disease is doing to there father.  this is so hard for anyone to go thru, esp. kids....but my kids have really had to grow up really fast in the past 4 months since he has just went downhill pretty fast. anyway i left work early to come home and my husband was actually being very hateful to the kids.  seeing and hearing things that were not there.  it's so hard to go thru this encephalopathy, it totally changes a person. anyway i uped his does of lactulose, w/o him knowing...(i mixed it in some gingerale) the first time he tossed it out and then the next time he actually drank it.  boy, this is really something. he absolutly HATES taking that medicine... our dr's are getting hospice involved. i should be hearing something back sometime this week.  i don't know exactly what that is going to involve, never had to do this with anyone before.  you know, what really bothered me the most about today was that he was swinging at our son and trying to kick him...he had fell and my son was trying to help him up, but of course, not to his liking....my husband is the most humble and gentle person in the world, wouldn't hurt anyone, and to see him like this is just unbearable. he is sleeping right now so i hope we will get some sleep tonight..the past few nights have not been well. he has not been sleeping good and he is starting to complain about pain...he also has severe muscle and nerve damage due to diabetes...diabetes is also what the cirrhosis came from.  the dr's are saying that the cirrhosis is making the muscle and nerve damage worse...i think that is why he can't walk on his own now.  well since he is sleeping i am gonig to wash dishes and go to bed.  i sure have been thinking of everyone on this site that i have been able to read about.  you sure have helped me out just in the short amount of time i have been on.  again, please continue to think of me and my family and i will do the same for yours. 
oh, also wanted to mentioned one other thing.  he is not wanting to eat...i really can't get him to eat anything but jello...i guess this is normal, huh?  he had lost weight, but more than that just muscle mass.  he looks to me like he is going to be just bones before long.
well talk to everyone very soon.
thoughts and prayers to everyone.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/8/2008 7:29 PM (GMT -7)   

{{{{{{{{{{{Julykid}}}}}}}}}  I'm sorry you have had such a bad day.  It must be very hurtful to your kids, to see their father like that.  Just reiterate to them that it's the encephalopathy and that their dad really doesn't know what he is saying and doing.  I hope you can get the encephalopathy under control.  That would help.  Hospice is great.  Depending on need, nurses will come to the house to assess the situation and change meds, if necessary.  I've never heard of anyone getting cirrhosis from diabetes, but I don't claim to know everything.

I pray that you find the strength to get through these bad times.

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/8/2008 7:30 PM (GMT -7)   
Julykid, I am so saddened by what you and your family are going through. I had a similar call from my 13 year old daughter (she is 14 now) several months ago. He was not violent. He was just not making sense when he talked. I told her that he was ok and that he just needed to take more lactulose. We gave him more and later he was better. Fortunately, I don't have a problem with getting him to take the lactulose. He will usually take it when I give it to him. My kids have a hard time understanding what is going on. I have a 22 year old son, 20 year old daughter, and 14 year old daughter. They sometimes don't have patience when dealing with their dad. This disease takes so much away from a person. It has been so hard for me to watch, and I haven't had to deal with as much as you have. I can only imagine. I am so sorry that you have had such an awful day. I hope tomorrow goes better for you. Get some rest. You will be in my prayers tonight.


Butterflythree
 
There is always hope!

Post Edited (Butterflythree) : 7/8/2008 10:15:03 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/8/2008 9:12 PM (GMT -7)   
Hello Julykid, I too am sorry about your day. Hopefully you and your family will get a good nights sleep.

Take care........thoughts and prayers for you all.........
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.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/9/2008 4:04 AM (GMT -7)   
Julykid

This disease so horridly affects everyone in the family. I am so sorry that your children are having to deal with seeing there father like that. I hope that today is better and will keep you and your family in my thoughts and prayers.

Lucy

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 7/11/2008 12:51 AM (GMT -7)   

  cool   Hi Julykid,

 Welcome to the HealingWell forum. I am Carol(54) and my husband(56) is suffering from this disease also. He does not have diabetes, although the hospital keeps putting it on his chart for some reason. Maybe there is a connection somewhere. IDK. You and Butterflythree and your husbands seem awfully young to be going through this with your husbands. Am I wrong or right. Some people don't want to tell their age. I am curious. I am sure your children don't understand what is going on with their Dad. I would never have understood this at such a young age, if it were my Dad. It is something that will have to be taught to them. I hope there is a way that you can re-teach your husband to be kinder to his children. I don't know what I would have done if I'd had to go through this when my daughter was young. It was bad enough with the drinking. He traveled with his job and was gone weeks at a time. I've learned over time that traveling business men do drink a lot. When he came home, he drank. We were just so glad to have him home, I didn't make a fuss, until it got to out of hand. I was not so young and dumb.  However this disease happens, it happens. Sounds like you have had to grow up fast also.

My Terry isn't eating much either. Tonight I made him French toast. Breakfest food always seems to work when they don't know what they want to eat. The main organs are just trying to survive, so they wil take their nutrition from where they can get it~via mussel tissue. Happens with any disease.

Hope you check in soon,

Carol


 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/11/2008 3:44 PM (GMT -7)   
Hi Carol, I am 42 and my husband is 44. He was diagnosed with cirrhosis at 42. His cirrhosis is from alcoholism and hep C. I guess cirrhosis knows no age. My uncle died at the age of 36 from cirrhosis. He was a very heavy drinker. Drank Busch beer from the time he woke up until the time he went to bed. He never appeared drunk. I guess he developed a high resistance to alcohol. He was one of the sweetest men you could ever meet until a couple months before he died. I have been worried about what I will do if my husband should start to get more violent. He is already a moody person, and my 14 year old really knows how to push his buttons. I have been just trying to watch him and keep administering the lactulose. He does fairly well. Does your husband have a craving for sweets? That is just about all my husband wants to eat. I have been able to get him to eat other foods as well.
I am continuing to pray for you and Terry.
Butterflythree
 
There is always hope!


julykid
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 7/11/2008 4:02 PM (GMT -7)   

hey Carol,

thanks for the welcome,i really can't believe all of the support that is offered from everyone.  it helps to know that I am not alone in this. as far as age, i am 34 my husband is 59...we do have 2 young children that still live at home and he has 2 older from a previous marriage.  this has been one of the most difficult things i have ever went thru.  and the kids, they are wonderful, they have been to the dr with us so they know that this disease will eventually take their dad from them.  my son, 13, is dealing with it not as well.  he seems to be very frusturated if his father asks him to do something for him.  i can't even act like i would understand if i was in his shoes..my daughter, 17, is really wonderful, she is there whenever needed, never fussing or getting irrated.  i have alot of people ask me if my husband ever drank, i think they just assume if some has cirrhosis that they drink.  not the case for us...he never drank.  he poorly managed diabetes it was caused this, and by the time i met him it was probably already to late, i'm sure the damage was already done.  i really tried to get him to take his med's right and everything but when they removed his gallbladder in 01 that's when they found out he had it.  but fortunately he stayed stable until last year, and since feb of this year he has really went downhill fast. 

i'm hate that anyone has to go thru this w/the one they love, it's so hard.  lee did eat better one day this week than he had been doing. it's always good to see them eat something other than jello...hospice came into today and they are going to be treating him now.  i don't really know what to expect, sometimes this doesn't seem real, i don't know if that's normal or just me.  how long has your husband been fighting this disease?  is he still able to work at all?  i think the hardest thing for Lee is that he is no longer able to drive...that has been one of the toughest things for him to deal with.  well got to go and i hope to hear from you soon.  thanks for replying to me.

thoughts and prayers,

michele

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 7/11/2008 7:53 PM (GMT -7)   

Hello Butterflythree,

Yes Terry has cravings for sweets. The Dr said it is a substitute for alcohol. He doesn't eat much of anything these days. Nothing tastes right to him anymore, so he turns to sweets. As far as food, he will eat sweet potatoes, baked potatoes, grits & eggs, watermelon, and hamburgers. He used to eat a lot of salad, but lost his taste for that. He won't do smoothies or anything different. It will be blueberry pancakes for breakfast in the morning. Sometimes we get a pizza.

He just tried to tear up the new reclining couch because he couldn't get the foot rest to come up. I hollered at him to stop because I know how fast he can tear up something. He said, "You didn't have to yell at me."  Of course I felt bad and appologised. He's just having a really bad day. I've never seen him this way before. Maybe he should be in the hospital. I'm not sure yet. I'll watch him closely tonight & tomorrow.

Carol


 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 7/11/2008 8:18 PM (GMT -7)   

Hi Michele,

Sounds like you have some really great teens. 

No, this doesn't seem real to me either. Terry found out in 2003. He has probably had HepC for a long time. Even though the cancer is almost gone, he is getting worse everyday now. I'm so scared too.  My husband doesn't want Hospice for him yet. They are here for Mom though. The nurse comes in once a week and a CNA comes in to give her a bath. Mom will only do a bath once a week. It is just too much for her. She likes the volunteers that come in to sit with her when I go on errands. I wish I had family close by to help out sometimes though. Oh, he hasn't worked since last August. He is on SSDI. The savings is going fast and that is a scarry thing too.  I think his driving days are over. He has always ridden a Harley and now it just sits outside the window so he can look at it. He won't let anyone put it in the workshop.

What is Hospice doing for Lee?

Carol


 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/11/2008 9:09 PM (GMT -7)   
Hi Carol, My husband loves watermelon. I bet I buy 3 a week. He eats most of it by himself. I don't know what I'm going to do when they are out of season. I know what you mean about how fast they can tear something up. My husband is the same way. For some reason he put a watermelon in the drawer in my refrigerator. I caught him trying to pry it out lastnight. I heard cracking noises, and I made him stop. I got it out for him. I don't think he knows his own strength. I always feel bad after I lose my patience also. It just can't be helped sometimes. I hope Terry starts doing better tonight, and he doesn't have to go into the hospital.

My husband has a Corvette that he likes to drive. It hardly ever leaves the driveway. He has good days every once in awhile that he is able to drive, but I'm always worried when he does.

I'll pray that Terry does better tomorrow and that you get some rest.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/11/2008 9:11 PM (GMT -7)   
Michele, I understand what you are saying when you say that it doesn't seem real. I feel like I'm walking in a fog sometimes. I am so sorry that your husband is doing so badly. I hate this disease, and I hate that families have to watch someone they love go through it.

You are in my prayers.
Butterflythree
 
There is always hope!


julykid
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 7/12/2008 6:22 PM (GMT -7)   
Hi Carol,
 
i hope your husband is doing better today, sorry i didn't get to reply sooner.  lee has wanted to be outside on the front porch all day, as hot and humid as it was....he hates being inside. i guess hospice is going to do what they pretty much are doing for your mom.  i think the volunteers are really going to help us out.  i'm pretty anxious to see all they can do for us.
have a good night, i'm hoping to get in bed early.
 
thoughts and prayers,
michele
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