Getting very tired of the rollercoaster - British Liver Trust

British Liver Trust
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Getting very tired of the rollercoaster

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So my husband has been in the hospital 7x this month drained 2x, the other time he was near death again. Totally unresponsive , eyes rolled back. However they brought him back, along with prayers. But he's brought back just to suffer more. He was discharged from the hospital 2 days ago they didn't say much just it's going to get worse. He has to go back every 2 days for iv shots of antibiotics. He is swollen, they should have drained him again before releasing him. I also work so he always needs something just before i head to work. I often wonder if he does that so i don't go to work.Work is actually a break away from all of it aside from paying bills.

Now he also has a rash all over his body which looks like eczema, what is this from? Another question i ask is he's had every symptom except Jaundice. I've been told that in some they turn a dark color. Is this true and why has he not turned yellow. There was a time when he looked a pasty color.As well he has a huge growth coming out of his bellybutton. I thought it was a hernia but nurses said something else. It is so hard being caregiver to a dying loved one..this is the 4th loved one i've been with till their day came and i watched them pass. So even though i'm prepared i find myself getting angry,impatient and honestly wishing the day would hurry up and i know others feel the same way AT TIMES when it gets overwhelming. I think i would leave if he had family to help come care for him. I can't even get away to the store he has to come with me when all i want to do is have some time for myself.

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Just to add to my post. I feel like i'm not given the answers i need to help me understand what's all happening in his body. When i take him to the hospital shouldn't his original specialist come and see him, what questions do i need to ask , what tests should be done, etc..The hospitals tell me nothing!! Like why is his bile bright red when he was drained..this last time as i said he's given antibiotics every 2 days at the hospital and all they said is it's to fight off infections. Well what kind?? Again what questions do i ask and do i need to tell them what tests to take? I also feel he's tired of taking the meds that are keeping him alive. If he decides to stop taking all meds would he pass away because i think he purposely doesn't take them ..he's tired of living life like this. If he does stop everything will the hospital care for him like that..not giving him ANYTHING but maybe pain meds? Can they force him to take it or will they respect his wishes to stop all life saving meds?

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Oh god do I know what you're going through. The mixed emotions along with exhaustion wanting to be able to run away from it all but feel duty bound to stay... I could go on and on. In a nutshell, in my husbands case the docs didn't really know how much time he had left. Even 3 days before he died they wouldn't commit..... they said there's always hope but I knew in my heart of hearts it would be soon.

You have thrown in a list of questions in your post those are the questions you need to be putting to the medical team. As we all know they are very busy people and unless you ask them questions information won't be forthcoming. It's worth phoning his specialist's secretary for an appointment or a call back so you can put your questions and concerns to them. Make a list and keep it with you at all times.

I was in the same boat, having to work to keep the mortgage and bills paid and my children safe to live as normal a life as possible. I felt I was carrying the weight of the world on my shoulders most of the time, trying to hold it all together. I'd paint on my smile in the mornings and hey everything's fine ..... but inside .....

All I can say is I'm so sorry he's coming to the end of his life so please try to spend a bit of quality time together each day while you still can. You will have endless time for yourself when he's gone so please don't look back and regret not holding his hand at the time he needs you the most. You've been through it already with previous partners you say which proves you are very strong and you know you will come out the other side.

I wish you well and hope you get the answers to the questions you want .

Laura xx

Oh my lovely I know how you feel caring for a loved one is extremely hard I know. I cared for Paul right to the end and its hard. It will get harder rather than easier trust me but you where and are there and that's important. I worked too full time Paul had carers twice a day as well but it never ends but you love them so much and always remember u give it Yr all and that's all you can do. My love and thoughts go out to you xxxx

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