Any info appreciated

My brother who is only 36 has hep c and Cirrhosis, I have been told due to hep c he will not get a transplant.

He was living in Dorset, and at the end of November he was found in his flat all swelled up and unconcious.

After 3 weeks I brought him home to liverpool to live with me.

He has jaundice, his sats are very very low, he is constantley sleeping, and when he is awake, he is talking very slowly and moving very slowly.

I want to help him as he is my only brother and i want to look after him, but i find my self getting very angry and annoyed with him, and causing arguments with him, and i hate doing it.

Please dont judge him for this, but he is also on meathedone 25mg a day, and has been on it for touching 2 years, I dont feel he should be on it with his damaged liver, but if he feels his script wont be at chemist he totally changes for the worst.

He is on lots of medication including lactolose 30ml 3 times daily.

I can not get any help on what i can do do help him, diet etc etc.

I would just like some advice and guidance on what i can expect, and how to do my best to help him.

 

Thank you.

He had a liver function test last week, should have results on friday when we next go to doctors, am going to speak to doctor, and make sure he has made the referall to the liver team, yes it is the uk am from, what a great forum this is, i have lots of reading to do, thanks for the welcome and advice.

Willo,

So sorry to hear about your brother. He seems so young to be dealing with this disease. So sorry you also are having to deal with it, it is NOT an easy thing to be the caregiver.

As to diet, no red meat, as it's hard on the liver. Lots of fresh fruits and vegtables. He may not be able to remember to take his lactalose and other meds regularly. You may have to "guide him" as to when to take it. My hubby, who has ESLD, lost the ability to make meals for himself. He can't figure out all the steps needed to make a sandwich or use the micro wave or shower himself. And if the lactalose isn't working that particular day and the toxins build up because he can't POO, his thinking gets even cloudier and behavior crazier. Doesn't do any good to disagree with him then, because he is mentally "not available." So far, this "brain fog" has cleared up each time, just takes a while.

I was angry for a long time, as I thought he was just manipulating me to do for him all the time. (And of course, he would argue about stuff because he couldn't remember, or was upset himself, or just because...??) But finally I realized (by reading up on the disease) that he has lost the ability to think through all the steps needed. But he can pick up a piece of fruit and eat it, so I keep a BIG bowl of fresh fruit available all the time. Currently he is in and nursing home (hereafter the B & B) for 30 days and I keep a BOWL of Fruit there too. (I am lucky that he just turned 65 and now qualifies for Medicare.)

Please keep posting and let us know how it is going....or just to vent...or to ask a question. Folks here are caring and will give you their experiences and advise..sometimes very blunt, but it helps to know the score and not *****foot around about how difficult and devastating this disease can be. Your brother is lucky to have you to help him.
Angie1953

Hi Willo, and welcome to HealingWell. Most of us caregivers or former caregivers have walked in your shoes. We know how difficult it is for you. All your feelings are quite normal giving your circumstances......Don't be hard on yourself.......you are doing a great job..........take care.....thoughts and prayers......

Willo , There doesn't seem to be much left for you to do . Baring a miracle he will pass and hopefully in peace , It's good he had the forethought to leave you with his love and the hope of a bright future . Many don't get to say goodbye .

I guess your only responsibility lies in the matter of life support and that is something that should be considered on a individual basis , As for me I know if I was in his condition with no chance of life I personally wouldn't want to know my family was suffering watching over me . My living will is to remove me from life support should this happen .

I have heard Britain's Health care is horrible and this further backs up this claim . Hep C. patients get liver transplants routinely here in the states . Was there other extenuating circumstances that made him unacceptable for transplant ? If he had been treated from the onset early in his diagnosis this tragic end may not have came . Early detection and lifestyle changes combined with preventative medicine could have made a world of difference .

My condolences to you and your family , There is a caretakers thread here and maybe some of those ladies could walk you through the next step .


A. Ziffle

So sorry Willo, my heart goes out to you, your brother knows you love him, please don't be so hard on yourself, I'm dealing with a husband that has ESLD. He isn't to the point that your brother is but I know its coming. Come back to this forum when you need to share whats in your heart. Take care Pat

Thank you all.

My brother is having severe bleeds now, bleeding from back passage and bringing it up from his belly, and also his kidneys are failing, he is heaveliy sedated, but he keeps opening his eyes and telling my mum and i that he loves us, and then nods back off to sleep, the nurses say he is not in pain, but he is he shows his pain, and it is clear to see he is in pain, it is cruel what the hospital are doing to him, they keep pumping blood in to him, but its coming straight back out, he has pipes up his nose and back passage with bags on and they are filling up with blood, i hate seeing him this way, he is a very proud man, and he would hate for us to see him this way, its not about what my mum and me want, its about whats best for Alan, would he want all this, the hospital have said to my mum and me, to prepere us, that if he has a massive massive bleed it will not be nice for us to see.

But i want to hold his hand right till the end, and be there and be strong for him, but i hate the thought he will go in pain, or that he is in pain, i want him to go peacefully, not in pain.

As difficult as it to swallow the notion of watching a loved one die , Your feelings on him feeling pain may not be correct . I feel like there is a fine line in how much pain reliever can be administered and still leave the patient conscious , I guess it boils down to would you prefer him wake occasionally and say I love you or not possibly wake at all . So sorry things have come to this point and my thought are with you .




A. Ziffle

Willo,

Though I hope this is not his time, it may well be.  Have you prepared yourself, your family?  Are there family members who should visit?

We are thinking of you.  Let us know how you both are.

Hugs,

Carol

Willow,

Good morning. so, good news amidst dire situation.

There is a cautionary tale here for those who refuse to take their lactulose. When things get serious, they administer the lactulose however they can!

Let us hear from you as the situation changes.

Many hugs on this Easter Morning.

Carol