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Posted 9/24/2010 10:16 PM (GMT 0)
Hi everyone,   This thread is for all of us caregivers who just need to vent and talk to others who totally understand.  The life of  being a caregiver to a patient with liver disease is very stressfull ......believe me I know.......as a former cargiver.  If it relates to liver disease and it's effect on you than this is the thread to post it on. If it is directly about the liver disease patient whether it is questions or suggestions than  post it as new thread or reply to an existing thread.    

So I will start first.  

When my husband wouldn't stop drinking after he first was diagnosed with cirrohosis I had to make a choice.   Do I stay and watch him kill himself or do I leave and save myself a lot of heartache?   I chose to stay with a lot of mixed emotions.  In dealing with them I had to come up with some survival tools for myself.    Mine included but weren't limited to ........working a lot,  my granddaughters, and lot's of walks. 

When things got really tough,  and I was in panic mode I found HealingWell.

I am not sure what I would have done if I didn't find HealingWell when I did.  Because it was instrumental in getting me through a very stressfull time I wanted to give back.......hense........moderating.  

Thoughts and prayers.........   Pink Grandma 

Posted 9/25/2010 3:03 PM (GMT 0)
for me caretaking was hard. i was the only one helping my mom and it was consuming. i was missing work, time with family, and my sanity. at times my mom was hateful and hurtful. at times she was loving and caring and i never knew what it would be. it was hard seeing her suffer and many nights i cried. my husband was there but had no idea why i did waht i did. everyone told me that i was going to far out of my way to help a woman who never cared about me. i had no choice. she had no one and i couldnt live with myself if i wasnt there for her.
Posted 9/25/2010 3:41 PM (GMT 0)
I have a long, tough road ahead of me. I am a caregiver for my significant other of 12 years. Things arent too bad right now. He has periods of extreme fatigue, to the point where he falls asleep standing up. He falls alot too. He is able to stay alone while I work, and I work alot! My work is my savior! Most of all I get lonely. He sleeps alot and the few hours Im home in the evening he usually cant hold his eyes open. Im not sure what Im going to do when he can no longer stay alone.

He was fortunate enough to get approved for Social Security Disability last month, that helps ALOT. Im sure to be on this forum alot to vent.

God Bless
Kathy
Posted 9/25/2010 7:26 PM (GMT 0)
hi everybody,Mydad has just started his long journey with liver cirrhosis as some of you will remember,my mum also has cirrhosis however not in the same way,she has been stable for 6 years.Dad went straight into his symptoms ascites been the first sign.My sister an myself are trying to cope with parents who have been independant an not told us anything,an sorted thier own lives out,to the point where now they think we are being nosey.Ihave found one of the things that happens when you are a carer,an in saying this in our case we pop in most days an weekends are taken up with visiting an shoppping for them.Dad is our main concern at the moment,extremely difficult stubborn,not taking to us been NOSEYas he puts it.My dad has gone from been a lovely kind man to being difficult,an moody.Iwould say a complete change of personality.My sister has a full time job,an i have a husband an a son at home,we have become like detectives,it drives us potty.  what time did dad get up?what did he eat for breakfast,is he tired,is he weak.did he manage to shave,what time did he go to the loo,an how many times has he been since.Did he eat the dinner you made him?if not why not..dad rings us at odd times through the night ..an acts like its 2pm in the afternoon!!I feel it is our time to pay them back for the care they showed us when we were young,however as my hubby pointed out the other night..he has noticed i have lost weight,dont sleep that well(ear to the phone)between washing for them,changing bed,doing thier shopping,running them to hospital an doctors appointments,both my sister an myself look exhausted.so i guess what i am saying here is ...although we both love our parents,we have to have time for us an our familys,an time to ourselves....i am laughing now becauce as i was writing this,mum rang (can we pick up another 2 items at the shops tomorrow on our way to theirs..this will add to the other 12 items she wants tomorrow,plus bringing back the ironing i did for them.Of cource i said "ok mum"  ha  ha    soo look after yourselves everybody...spooky x
Posted 9/25/2010 10:33 PM (GMT 0)

I'm a caregiver for my husband who has ESLD and is on the transplant list.  His meld score is low and he is holding his own.  His major problem is encephalopathy and being tired and having his days and nights mixed up.  He is at home and someone is usually with him.  I also have a disabled daughter I care for so between the two it can be a little overwhelming at times.  Usually things go pretty well.  My main complaint is his extended side of the family.  They are not supportive at all and they are only concerned with themselves.  I did the holiday cooking and made sure my husband was there for his mother when she needed him.  She is a widow and we are the only family who lives in town.  I did all the Birthday dinners and presents etc.  When they see me having trouble with my husband they don't offer to help they just sit and watch and I swear are waiting for me to lose it!! smhair   Things are a lot better in that area now as I have stopped doing it all.  I've got people who are not to happy with me right now but that is to be expected. My husband likes it better this way and he said it makes things less stressful for us.  Our lives have changed with this disease. In fact his sister said to us on a Christmas card that we have different lifestyles and I said no we have a medical issue and yes our lifestyle has changed.  I feel bad sometimes for my attitude but I want help or get out of the way!!  I really don't want anyone to do anything for us just don't expect anything I have my hands full.

  My husband and I have been married 30 years and are trying to have a positive attitude about everything and taking it one day at a time.

Thanks everyone,

DDMom

Posted 9/25/2010 11:33 PM (GMT 0)
Boy I can relate to all of you.  I don't think it matters whether it's a spouse, mom, dad, sibling or friend.   We all have things in common when it comes to caregiving. 

I know that I felt all alone.  That no one understood.  Which they didn't.....how could they?   They weren't living with someone who was slowly killing themselves.  Some didn't understand that he actually was killing himself.  " What's the harm in a few beers?  It ain't going to kill him."  These were words from my family who were alcoholics themselves.   From his family I got .........." He ain't sick.  He's faking it." Some of them said........"Well he brought it on himself."  I understood my family's comments......I grew up with them.   I didn't understand his family's comments.  Didn't they love him?  Didn't they know their words hurt me? 

My family offered to help a few times........I had too my much pride to accept any help or ask for it.   ( I know better now!) His family never offerred until the very end......once hospice was called in.  Then they finally knew he wasn't faking it and I wasn't lying about his condition. 

Over 3 years later.......I still have flash backs to those awful times.  Thank God they are few an far between.   

Take care......thoughts and prayers....... 

Posted 9/26/2010 12:35 AM (GMT 0)
Thank you Pink Grandma for your post I was asking the same questions....Doesn't his family love him. My husband has Hep C and doesn't know where he got it and to be honest it really doesn't matter now it doesn't change anything. No drug use, no blood transfusion, just a big question mark. My husband quit drinking when he was 26 because of raised AST and ALT levels the doctor didn't know it was Hep C and told him you are probably allergic to alcohol so just stop drinking and you will be fine. So he quit drinking which was a big deal because he came from a family of heavy drinkers. I would think his family would be proud of him because it's not easy being around people who drink and you don't. He's now 53 and we've gotten the same thing, he's always sleeping, why doesn't he do something besides sleep. I've explained why and repeated it so many times that I have given up on the idea they are ever going to understand. My husband worked long hours for years till he was put on disability of which his work told him it was time. The people at work understood more than his own family. I can understand his family not understanding because they don't live it but just have some respect. Don't ask if he can roof your house....don't ask if he can fix your electrical problems...the man can't even stand up with out being wobbily on his feet or his mind not working clearly some days. I never had a problem with his family until he became sick and then sometimes they act like I caused it all. You would think they would be supportive of the person who is taking care of him...nope that means it's time to cause some drama because we aren't dealing with enough and they aren't gettting enough attention....argh!! I've had to tell them we don't want company till after 3 in the afternoon because they would just drop in first thing in the morning and wonder why he was in bed. I'm an easy going person and now I feel like I'm being forced into being nasty and I really don't like it....

I have been so thankful for this Healingwell forum, it's been a lifesaver for me. I get support as well as educated from people who are living it....It's great!!

Thank you all so much,
DDMom
Posted 9/26/2010 12:59 AM (GMT 0)
I can't believe how much in common many of us have. My husband contracted hep c in his late teens or early 20's. It has advanced to cirrhosis. He stopped drinking when he was diagnosed with cirrhosis. His main issues are fatigue and encephalopathy. We've been able to keep the encephalopathy under control for around a month now. He does have some good days. Days that he isn't so tired and is able to spend time with us. Today he barbequed for us (which he hasn't done in years) and lately he has felt well enough to play with our grandsons. It makes me very happy to see him that way. I am so hoping to see many more of these days.

His family isn't supportive at all. I have tried over and over to explain things to them but they never hear what I am saying. They don't understand why he wants to sleep so much. They have also been known to take advantage of him when he wasn't aware of what he was doing. They have made fun of him behind his back They have tried to convince my husband that his children don't even love him. They usually start this when my husband is out of his mind and play on his insecurities. Instead of trying to calm him down, they add fuel to the fire. My son has called them for help before, and they turned my sons words around to make my husband think my son hated him. I have never been able to understand how anyone can be so hurtful. Right now things have been good and they have been leaving us alone. I'm hope that there will be no more of these episodes.

My prayers are with all of you as you deal with the issues and peoples ignorances that arise with this horrible disease.

Post Edited (Butterflythree) : 9/25/2010 7:03:07 PM (GMT-6)

Posted 9/26/2010 3:25 AM (GMT 0)
I can relate to caring for someone who I didnt really know and I came to the disision it was the right thing to do I wanted someone to tell me not to do it but I came to terms it really was the right thing to do. She is getting what she needs. I believe most people dont get it due to most family relation but us with disfunctional families do it because it really is the right thing to do not because we wanted this for ourselves or our families and it really can make it harder than anything I have experinced thus far.
Posted 9/26/2010 4:38 AM (GMT 0)
I have to thank all of you for posting, because you have all said some things that are so true for my life. My husband was diagnosed with Hep C/ cirrhosis 4 weeks after our son was born.....6 years ago. It has been such a long, hard 6 years. Due to the Hep C, my husband has had alot of other medical issues, as well. He has been on and off the list quite a bit over the last several years and is currently on the list, very low on the list as his MELD is only a 7, which is very surprising! There are days when I just want to scream! Being a caregiver is one of the loneliest things in the world to do. I have had a lot of days lately where my frustration level is really high because not only do I have a 6 year old child I am tryin to raise, I have a 49 year old child, too!! Last year, for about a year, he was having seizures non stop. His seizures are finally under control as of March and we have him on the right seizure meds, but unfortunately he does have some permanent damage. The neurologist says over time his brain may compensate, but no telling. However, between that and the encephalopathy, let's just say he's not all there. Lately he's been alot more "with it" which is a good thing. He just has no "filter" and literally does not undertsand right from wrong with simple things like taking my son on a bike ride and safety rules, silly stuff like that. My hubby, too has his days and nights mixed up, and he's miserable. There have been days where I have jjust prayed for God to end his suffering. His family is close by, but they are in denial half the time. His sister just does not get that he's as sick as he is and his brother, who has had a liver transplant, is just in his own world. I guess they just cannot handle the fact that my hubby who is the baby of the family is very sick, so I am left to deal with all of it.

I have returned to school full time, as I lost my job last August and well, let's just say the job market is really tough out there. However, me being in school has given me something to focus on besides my husband being sick.

Well, guess I did need to vent, after all, as I have rambled on here! LOL!.

Mer
Posted 9/26/2010 4:40 AM (GMT 0)
I did also want to add that I do value the time we have. And, when we do have a good day, we try to take advantage of it......

God's peace to each one of you!

Mer
Posted 9/26/2010 2:02 PM (GMT 0)
my mom has been an alcoholic as long as i can remember.. it has now caught up with her. she was a mean cruel person to everybody that came into contact with her. had a drink in her hand from the time she got up til the time she went to bed.. i struggle to remember one good thing shes done without making you pay for having done it. and now. she is dying from liver and kidney failure.. weighs 83 lbs. wont eat. bruises all over body. extreme diahrrea, talks out of head most of the time, couldnt tell ya what day, month or year it is, cant walk. fell twice this week alone. but even though she is in the shape shes in, this woman who sleeps 18 hours out of a 24 hour day would still drink the other 6 hours if she could... i am taking care of my mom to the best of my ability. i dont feel a lot of love for her, but i do feel an obligation. she gave me birth. i owe her that if nothing else. her husband passed away august 4th of this year.  i cant count how many times she wished that man dead.. and he was a good kind man. she had one of her rages a few days after funeral. and all i could think was why cant i just mourn this man who was so good to me. she ruined that too. i dont mean to sound bitter. im not a bitter person. i just dont understand how people can let something consume their life to where they hurt and alienate everyone around. even when she found out about the liver and kidney failure she contunued to drink. i would of quit and prayed that maybe i could extend my life a little bit.  so thats my story and it hasnt ended yet. i just do the best i can, and take breaks from her when it gets too rough. i have a family of my own, a fulltime job and my mother. so i have a full life. thanks for allowing me to give insight into this caregivers life.
Posted 9/26/2010 3:50 PM (GMT 0)
I have a question regarding sleep problems my husband is on 10mg ambien of which he shouldn't be because of the encephalopathy. He has gotten use to the 10mg so sometimes it won't work so he will take another half of one and then go to sleep. By the time he takes the other 1/2 of one it's 6 a.m in the morning. Now he has been up all night so of course he will sleep all day. I'm frustrated because the doctors have told him to get off of them but he doesn't sleep unless he take more than he should. Are any of you dealing with this as well. He has tried all kinds of things to sleep and when he does any activity during the day he will be up all night. With no sleep aides he will stay awake for days and have the sunken in look, black circles around the eyes. He told me last night he is going to talk to the doctor about increasing his ambien....that's when I got annoyed. For some reason he forgets we have been going around and around about this same subject. No your doctor isn't going to increase your meds the doctor doesn't want you on them in the first place.
I am open to any suggestions,

Thanks,
DDMom
Posted 9/26/2010 7:02 PM (GMT 0)
DD, I have had the same issue in the past with my husband and sleep medication. He ultimately ended up taking way more than he should have, and it really did not do anything for him except increase is encephalopathy issues. I had a talk w/ the doctor and they will not give him prescription sleep medications any longer. Every once in a while, I will give him an over the counter medication, but that's not very often. So, we unfortunately are learning to live with him just being up until about 3:00 in the morning and sleeping every day until 12:00 or 1:00 in the afternoon. But, he's getting 8 hours of sleep, just not at a "normal" time :). Hang in there, I know it's frustrating!

Mer
Posted 9/26/2010 7:45 PM (GMT 0)

DD and Mer, I've been having the same sleep issues for a long time.  My doctor first suggested melatonin and it worked for awhile.  However, anything over 2 mg I would have very strange dreams and not be in a good sleep.  She recently switched me to Trazodone--an antidepressant--for sleep (50 mg at bedtime.)  I didn't want to take it, as I don't like the side effects of antidepressants, but out of desperation I got the Rx filled and have been taking it.  It does work, though I often forget to take it until around midnight.  I usually get up once sometime in the morning to go to the bathroom, and then go back to sleep until noon or later.  So I'm getting about 12 hours of sleep, but it is decent sleep.

Mer, it's so strange how different people can be with the same MELD score.  Mine is 7.  I calculate it myself, since I've never been evaluated for transplant.  Aside from constant fatigue, I am doing pretty well.  No encephalopathy except for some minor memory problems.  However, most people don't understand how limiting the fatigue is, and the need for a lot of sleep.

Hugs,

Connie

Posted 9/26/2010 9:47 PM (GMT 0)
Connie, you are absolutely right about the fatigue! My hubby just has no energy and is very fatigued.....I wish they would calculate that into the meld score :)

Talk to you soon!
Mer
Posted 9/26/2010 10:10 PM (GMT 0)
Thank goodness for this forum and everyone on it. I don't feel so all alone nor do I feel my husband and I are nuts!! With the no sleep and fatigue it makes for a lot of irritability.....


Thanks everyone!!
DD
Posted 9/27/2010 2:46 PM (GMT 0)
I would give anything to still be caring for my mom.  It was exhausting and tough and all of that, but I miss her every day, and I would have given up every hour of every day if she would have stayed with us. 

Child4

Posted 9/27/2010 3:30 PM (GMT 0)
Everything everyone write hits it right on the head. I'm a fulltime, live-in caregiving for my mom, and it's exhausting, emotional, and stressful. But at times like these, I figure you only get one chance to do it right, and I want to do it right. That and I love my mom to pieces. However, it's definitely not easy. Somedays she's just listless and stares and doesn't want to watch tv, try to read, etc. Those are the days when she's most snappy with me too, which was a surprise at first. Other days she seems in better moods and crochets. Then there are the times, when I'm the one that snaps at her, mostly because I'm beyond tired and stressed. I immediately regret it afterwards and feel guilty for being so harsh to someone as sick as her. I know I'm just human, and it's probably not abnormal, but I can't help feeling guilt about it. Because of her nausea, I try to make 6 small meals for her a day, and surprisingly, mom had a lot of requests despite all the diet restrictions, which is another beast in itself (low-sodium, low-potassium, diabetes, fluid restriction), and everytime I'd go out of my way to try to make something she wanted to eat, she's have some complaint about it or throw it right up, making all that work feel pointless.

Like worriedgirl said, I miss working, I miss being able to have a night "off", and seeing my friends and not feeling slightly bitter that they get to live such regular carefree lives. The one day recently I was able to have most of a day "off", I felt like a whole new person, and was a much better caretaker the next day, so taking "breaks" is very important for us caretakers.

My husband helps the best he can, but he works all day, and really just tries to stay out of the way or get me things I request. I have brothers, but they live far away, and even when they come to stay with us to help, it's just more people in our already crowded apartment, and more mouths to feed, and frankly, there are some things my mom will never ask them to help with (going to bathroom, helping her shower, changing her, etc.). Is there anyone out there that is taking care of a parent while the other parent is elsewhere? To add to all this, I feel bad for my dad because after 35 years he suddenly finds himself alone in the home he used to share with mom and calls 10 times a day I guess out of loneliness. He doesn't want to live with us too, but I think it's hard for him to adjust to being alone. Anyways, c'est la vie!
Posted 9/27/2010 7:41 PM (GMT 0)
while this may seem like a good idea... it's a lot harder to follow one person's dialogue if it's all put over here with others... I think everyone needs their own thread... easier to follow the dialogue..

Posted 9/27/2010 8:21 PM (GMT 0)
Sandi, this is meant to mainly be a venting thread for caregivers.  If there are other issues, of course you can create a different thread. 

Hugs,

Connie

Posted 9/28/2010 5:27 AM (GMT 0)
You know, unless you have been a caregiver it is so hard to understand! I would sometimes hear how I didnt visit family as much if at all and no one seemed to understand that I could walk out the door and everything be fine, get a phone call from a neighbor that Doug was insisting someone was breaking into the house, having no clue it was just a neighbor checking on him. His entire health could change in a matter of an hour. I would have to hide the knobs for the stove and had a portable alarm for the door to prevent his naked gardening! My grandson was one of the few people who could do his vitals check his sugar and give the insulin, he was only 13 to 15 when Doug needed more time and care. So you do become isolated and feel lonely and it sucks but you do it and survive, we survive because they need us to.
Sue
Posted 9/28/2010 6:34 PM (GMT 0)

Sue, you survived admirably and with great humor, though I'm sure it was really tough.  You opted to see the humor in his naked gardening and wearing your undies and in his delusions.

"You did good."

Hugs,

Connie

Posted 9/28/2010 9:19 PM (GMT 0)
imagine what the neighbors thought seeing him gardening naked
Posted 9/29/2010 3:35 AM (GMT 0)
Sue,

and here I thought I had the story to tell, when my husband went running naked through the hospital screaming that they were keeping him against his will, and he had rights, etc.....naked gardening takes on a whole new realm!

So, we have dealt with my husband having liver issues, and all the other complications arising from that, and he has finally accepted it. But, today, I took him to the ear doctor due to some ringing he has had in his ears for several months now (since his last major seizure). It has been getting worse, and I was suspecting he was having trouble hearing due to the volume level of the TV. So, ear doc does put him through the hearing testing, etc and my husband does have permanent hearing loss. At this point, it's 30% hearing loss. They have given him a vitamin supplement (that will not affect his liver) to help with the ringing and we have to re check him in a few months. With this news, he is thinking it is the end of the world! He has not taken this one so well! I tried to joke with him about it and he was very angry about this news! Good grief!! Just one more thing to deal with! Sorry, guess I needed to get that off my chest!

Mer

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