Psychological issues for carers

[fizzix50]

My husband has end stage liver disease but continues to drink, albeit not as much. After being treated for sepsis and pneumonia and four days in an HE coma I am at my wits end. I am fearful for him every day and seem to be unable to get past my anxiety and just try to live every day as well as I can. But I don't see the point of planning anything as he might not be here. I see no hope in the future only more hospitals, more fear and more pain. How do people get past feeling this way?

[susieanna]

When someone continues to drink with diagnosis of cirrhosis; there will only be one eventual outcome; if the liver is still compensated and they cease to drink, they can still live a relatively normal and long life usually; but this isnt the case re your hubbie. Such a hideous disease this is. I know someone with cirrhosis (unclear whether compensated or decompensated); but i know in reality what the outcome will be; its very frightening and sad; could take years; who knows; but so hard to cope/ the anxiety/ the worry etc; watching them basically kill themselves and all the hospital stuff to deal with; all the things booze does to destroy many parts of the body its awful. I am incredibly fortunate beyond belief; and after recent tests have a healthy liver; just mildly fatty. You will have to start thinking about your own future; do you have support? family/ friends? I guess there is no chance for him re transplant due to continued drinking?? Maybe talking therapy will help you? Think about what you will do in the future without hubbie; its not nice to think of this at all, i know and i dread to think myself of how i will cope; the things i can think of are making new friends/going away for a few days on your own; getting used to being on your own; joining social clubs re companionship perhaps re preparation. These things may make you feel guilty, but what else can you do? I don't know. You have to have support. Psychologically looking after someone with this disease is an emotional drain. Re hubbie & you; im guessing he is too ill for the both of you to spend a few days away somewhere?? Please feel free to inbox me; i need some support too and talking/communicating to others can help; in the meantime, i hope at least the hospitals are treating him with dignity and looking after each thing that crops up; hugs xx

[fizzix50 in reply to susieanna]

There is no chance of a transplant whilst he carries on drinking, the consultant made that very clear. He has a do not resuscitate on his file and has agreed a treatment escalation plan with only IV fluids and antibiotics on it. This makes me feel like the doctors are preparing me as best they can, but there are days when I just can't stop crying. I have taken early retirement to spend as much time with him as I can - we have been together for 35 years, and I couldn't abandon him now no matter how hard things get. I am hoping to take him on holiday next year if I can get insurance at the time. He is in denial about what is happening - I just I could just be happy to get through the day, and have fun together, but I can't get my head out of the future. I am starting mindfulness classes in January to try and become more present. I know this sounds very indulgent but I am so tired of having to cope with everything, and not sleeping well. I'm on anti depressants and they do help, but some days I struggle to cope. Our son lives a couple of hours drive away and comes home when he can. The hospital has been fantastic, totally non judgemental and very kind and caring. Couldn't ask for more really.

[susieanna in reply to fizzix50]

I see; and 35 years is a long time; oh of course i understand re never abandoning him; i would not do that either; but it would be nice if you could have a little respite perhaps. Of course you are tired; you are going through alot, thoughts of the future, coping and seeing your hubbie suffer; his being in denial too is frustrating i am sure. Mindfulness was recommended to me; i have yet to try it though. Im so glad the Hospital has been good to you both; it helps. I guess you must take each day as it comes, but you will of course think about what the future holds; depending on how bad he is re you coping; is there not any help adult social services could offer??

[Catfishjumpin]

I am dying of liver disease, finally it created 2 major organ cancers. 7 weeks ago I was road cycling, age 65 and then suddenly my liver is trying to go into failure. I am lucky to do one little thing a day now. I think mindfulness classes will help. I am Buddhist. I can only face all this pain and limitation and now I cannot eat but I tell myself, this is my ending, respect it, remember all the joy and do not feel sorry for yourself, others have far greater pain, Sudan, Syria. My life is not war torn. I am so lucky, nice home on the pacific, a little dog, people come and go to help me now. We only get so much in life and its a blessing to be this ill and have a good bed and food and people helping me. But I sure miss my life I was knew. Take care of yourself. Thats just my bit, I hope it helps you some. I sure would not want to upset you, your heart is breaking. Aloha

[Sere51789 in reply to Catfishjumpin]

I try and think one day at a time...yesterday has gone and tomorrow may never come...all there is today..and you can only eat one meal at a time, sleep in one bed, take in one sunrise and one sunset...

Truth is we all forget our mortality...those with illness and those without.

[Sere51789]

Yes being a carer is wearing...so very wearing..but to look after someone you have to look after yourself. I am giving advice i should take myself. But if you don't you find yourself drowning. My break is going to work..which isn't really a break at all...but you have to steal moments of normality and being carefree just to refresh yourself and be a better carer.

[Geffy22]

Mindfulness classes are a great idea, also arrange some counselling or grief counselling - it hit you like nothing else has and left me numb - just functioning - for months. I'm told year 2 is worse so I'm peeping for that and thought of Mindfulness as a good option as I'd heard such great things about it!

Good luck hun, sorry you're going through this. I also hope your hubby rallies and 2017 is a good un xxx

[fizzix50 in reply to Geffy22]

I'm going to join the Families Also Matter group who support the entire family. Does that mean you have already lost someone to this awful disease? If so, I am so sorry. On a good day I'm fine, but the black dog sometimes descends and I just don't know how to cope. 2016 has been an awful year - so as the song says - things can only get better! Thank you for caring and responding. xx

[Geffy22 in reply to fizzix50]

Yes my hubby died in March 2016 fizzix50 I went on antibiotics depressants and haven't yet come off them - they've really helped me cope!

Being positive, I used to work all the time - I love my work - but now I work 3/4 days a week (easier if your self employed like me). So now, the kids and I do lots more together, just wish I'd done this year's ago...!

[Lperica10]

So sorry to hear all this. I lost my dad in October to ESLD/cirrhosis. I was his caregiver and everything you wrote really hit home. I am on antidepressants too and sometimes can't stop crying. My dad quit drinking June 1 and it was too late and he knew this. He had many near death experiences and chances to stop and a lot of support but he never did. Doesn't change the fact though that he is now gone at 63. I wish I had answers but this is the hardest thing ever. Being his caregiver was so hard and I felt alone and now that he is gone I just still don't believe it at times. I felt the same as you though I couldn't leave him even when HE made him downright cruel to me and sometimes it wasn't HE it was just him being so frustrated. I could never leave him.

[Lperica10]

Please feel free to ask me anything and I will answer honestly.