Palliative Care

[fizzix50]

At what stage should you initiate palliative care for someone who has stage 4 cirrhosis (end-stage)? Does the GP need to refer them for palliative care or can this be initiated yourself? Am struggling with what to do for the best for my husband - currently OK but has had hematemesis recently and was hospitalised for it after going into a hepatic coma for four days..... thanks for any advice you can give.

[Bolly]

This may help. ncpc.org.uk/palliative-care...

It was originally for cancer but can be used for all conditions. Deciding when someone is 'terminal' is a difficult decision to make but my guess it has to be a decision made by a medical professional. People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. I'm not sure if end stage 4 = a 12 month prognosis. It may not.

If you have a hospice where you live you could ask them what would 'qualify' your husband to be able to use their services.

[Catfishjumpin in reply to Bolly]

I was stage 4 more than 5 years ago. But now I have cancer for 2 1/2years..Aloha. I am sorry. Its very hard being so ill.aloha

[Michiganpbc]

Here in Michigan when my mom was fighting cancer I was told by her doctor it is if you have less than 6-12 months to live hope this helps hospice is wonderful they will give you any information you need for free good luck hang in there ....

[Millie09]

First of all I'm am sorry to hear about your husband , I too have stage 4 Cirrosis . My dad had Secondary cancer to the brain , I took care of him for 15 months till he passed . We knew he had 6 months left to live but he remained at home with the care of the family , it was only in the last 2 months that he went in to hospital due to pneumonia , he never really was the same after that . So after talks with my doctors and social services we then had him put in to a home that had Pallatiive care with the Macmillan nurses .. He was so well taken care of . There was no way I had the strength or knowledge to take care of him in the last ten days of his life due to losing his ability to speak , talk , eat , walk etc .. Go with your instincts . You will know when it's time . Sending you best wishes

[Lperica10]

I am so sorry to hear this. Are you in the U.K. or the US? I can speak from my experience with my father. He was diagnosed with end stage liver disease at the end of July and during a hospital stay they (his doctor and his specialists) referred him to the palliative care team. They called me and said they tried talking to him and he told them to leave. So when he calmed a day later or so we had a meeting and everything was explained again. He understood but refused hospice because that's what they said he needed (he did). But he didn't want it so he spent the next 2 months in and out of hospitals, ERs, rehabilitation centers, his home (a day here a day there), and it was soooooo hard on him and me that he wouldn't accept help (most stubborn person I know and MANY people have said the same) anyway - if your husband is willing I would say get help now because like others have mentioned it gets VERY hard and you CANT do it alone. I did it alone until early September when I called an ambulance and he never did come back home (he passed 10-12-16) in that time he went from a long stay in the hospital to a few days in a rehabilitation center then back to the hospital where he passed. Good luck and let us know. Thinking of you. Let me know if you have any questions.

[Catfishjumpin]

I just was put on hospice. I cannot be transplanted. I suddenly went down from cycyling 20 hard miles to not having enough energy a day to walk around and do a thing. I began to sleep 20 to 24 hours a day. I had very bad liver pain and I need morphine. They are a great crew of staff.my oncologist called then the hospice called and I am much more comfortable.. i am so sorry. Be strong. Aloha

[fizzix50]

He cannot be transplanted either - I just try and stay positive and upbeat for him all the time. It's like he refuses to face up to it, and thinks he can keep on coming back from the brink of death. It is so hard to keep on going through that. I'm in the Uk - and we have had the discussion with the GP on the treatment escalation plan - where he agreed to one more emergency hospital admission (with only IV fluids and antibiotics allowed as treatment - no intensive care and a do not resuscitate order in place) - but I don't know if he fully understood the implications of that. I have tried to prepare our son as best as I can but it is so difficult to be matter of fact about it and not sound like a drama queen. He has been hospitalised twice with burst varices and told he has escaped death both times, and I live with the fear daily it will happen again.

[Hidden in reply to fizzix50]

My heart goes out to you, such a difficult and traumatic time and very much the Unknown.

Your situation and what you are dealing with is, sadly, identical to what I have been facing for some time now, however, mine is with a friend. It is heartbreaking.

Since Christmas she has been admitted to hospital twice with major bleeds from varices, she's had blood transfusions, banding done on both occasions, she's basically living on borrowed time having been told back last year that she has end stage liver disease, yet she continues to drink. I cannot stop her, no one can, she has decided her fete and to be honest I don't know how she is still going.

She tells me what hymns she would like at her funeral, that I'm doing her eulogy and yet I sense an underlying fear and an extreme loneliness. She has three children who refuse to visit and I just feel that she's given up. I am the only person who has stood by her but it's soul destroying watching the effects of this disease and how it robs the sufferer of everything that once defined them.

I never know from one day to the next what I'm going to find, and that, I think, is what is so difficult.

You are in my thoughts, I wish I could offer more, all I can say is I understand.

Jacqui xx

[fizzix50 in reply to Hidden]

I hope her children can forgive her and visit her, not just for her but for themselves. This is an awful disease and once alcohol gets hold it is harder to break than heroin addiction. She must be so frightened my heart goes out to your friend. I just hope when her time comes it is peaceful. My husband definitely doesn't want to die in hospital....

[Hidden in reply to fizzix50]

Thank you for your kind message.

I've tried so hard with her children but sadly her ex-husband has twisted their minds against her with such lack of empathy and understanding. Sadly, he is one of those who believe it is purely self-inflicted, he has remained ignorant of the disease of alcoholism.

On the 9 March this year I celebrate 10 years continued sobriety, but as someone who has trod that path I am still astounded by the lack of understanding of so many when it comes to this disease.

My friend was a devoted, lovely mum and not seeing her children destroys her. I know deep down it is the reason she continues to self-destruct, she cannot cope with the loneliness and heartbreak caused by them not being in her life.

Living on her own frightens the life out of me, the number of times I get calls from paramedics, being listed as next of kin, I've lost count of. I live in dread of the call which may be the one I don't want to receive.

I've never given up on her but after her last hospital admission I know now that it is just a matter of time. I've left messages for the children but so far nothing, truly heartbreaking, she has no one. It leaves me wondering where some peoples humanity is?

I hope that you enjoy the time with your husband as best you can and wish you both a peaceful day.

Jacqui xx

[fizzix50 in reply to Hidden]

It is so true that there is always someone worse off than you. At least I have the support of my son, who understands the issues and loves his dad unconditionally. For your friend to have to cope with the loss of her children must be unbearable. I am not surprised she is reacting the way she is. There is so much ignorance and intolerance around alcohol and drug abuse; they say life teaches you if you are willing to learn, and I have learned so much around the lack of understanding and empathy. Having said that, the dedication of the doctors and nurses who have treated him, without comment or judgement, has been exemplary. I can't fault them at all - and they have been so supportive of my son and myself. We all have to remember - bad things happen to good people. I am a pagan and don't believe in God, but I do believe in some of the teachings in the bible, the best of which is judge not less ye be judged. I am trying to make the best of each day, with the motto plan for the worst but hope for the best. Some days that is easier than others, but I know I gave a promise till death do us part, and I will live by that.

I do hope your friend finds some peace in her heart, I know how hard it is to be a spouse in that type of relationship, but for her ex to show no pity is so awful. Even if you can't forgive behaviour, you can at least try to understand it. Maybe it is just too painful for him. Let's be charitable and believe that. They will all have to live with their conscience when her time comes, I hope it is not too heavy a cross to bear.

Keep strong if you can sweetie, you must know your love and support mean a lot to her. xx

[Geffy22]

fizzix50 so sorry to hear this, people can live a good while at stage 4 - it's tough and I know people who have, so as long as he can eat, stay off anything that can have a bad effect on the liver, hopefully he will be with you a good while longer.

I would talk to the GP and arrange palliative care/support as you need. I hope you are able to claim some form of carers/disability allowance to help pay for the non medical help you may need - eg a carer to watch him whilst you pop out or someone to do the shopping for you etc.

I wish you all the very best hun xoxoxo

[Jan314]

Hi,

Sadly I am in the same position I feel. Today I took my husband to a hospital appointment and palliative care was discussed. I was told I need to refer to GP, also respite was mentioned, as I am struggling to cope with the physical and mental challenges with someone who is so Ill. Social services have been sympathic but as yet have done nothing even though he is a urgent case. I suspect because he is an alcoholic.

I hope you get the help and support you need.

[fizzix50 in reply to Jan314]

I do hope it is not because he is an alcoholic - People can be so judgemental when it is an illness, and a really difficult one to beat. When you see someone you love slipping away day by day it just breaks your heart. Some days I just pretend it isn't happening but deep down I know there is no getting away from it. Our time is limited and it is just a waiting game. I worry everytime I have to leave him alone, just in case. I have given up work to be with him as much as I can, but now and again just need to do something normal. I'm so jealous when I see happy couples in the street thinking that used to be us. Am I crazy or just self absorbed? I have no idea

[Jan314]

Thank you.

His liver failure is due to alcohol. He was diagnosed in 2012 that there were problems after a mini stroke. We were told he should stop all alcohol then but he made the decision that he wouldn't. I could see his health deteriorate in early 2015 and subsequently gave up work in June of that year to do some of the things we had planned to do when we retired. Spent twelve months of fun, holidays, days out, weekends away, but sadly health then made that impossible. The thing I find so hard is his mental health. He has mood swings which mean he is nasty, angry, aggressive and the next minute crying.

I understand about leaving them, you don't know what you're going to come back to. I have lost friends who I can no longer make the effort to see as I am so tired. I do see a few people but they understand the situation, and they make the effort too.

Keep your family and friends close, spend time with them. You are not crazy just stressed and confused. We miss the lovely man we married, the great times we shared, and the comfort we had together. Perhaps we are grieving already.

With love x

[fizzix50 in reply to Jan314]

I agree there is an element of grieving already - for the lost future we won't get. I am trying to take him on holiday this year - can still get insurance although it is massively expensive. I guess your hubby's nastiness and anger is based on fear, and me telling you to try and separate that from the man he was is asking you to fly to the moon!

I do hope you find some peace, and hope he is with you for a while - I know even though it is difficult to live with, I would rather have him with me than not.

xx

[Jan314 in reply to fizzix50]

Keep strong my friend xx

[briccolone in reply to Jan314]

sorry to hear that Jan-you have my best wishes-a good friend of mine went the same way

[Millie09 in reply to Jan314]

Sorry to hear Jan 💕💕xx