PALLIATIVE CARE

[Peeps7]

Feeling very naked and exposed, Peeps has spent most of September in the Liver Unit at London Bridge Hospital but has finally been sent home to die. There is nothing more that can medically be done. He is now subject to Palliative Care at home with the help of the GP, District and Hospice Nurses but all that will be done is to step up the pain relief with injectables. I am told it could be months, possibly weeks, I cannot bear to think about it, all the time Peeps is struggling to survive then I must do the same. We have been married 30 years and have 5 children and 11 grandchildren between us, most of them very supportive so I consider myself very fortunate. The pain for Peeps is now his worst symptom, his appetite is very poor and he has lost so much weight and all his muscle has wasted. His HE is a misery probably more so for me than him but it is heartbreaking to watch my husband endure all this and times when I do not recognise him anymore. He was never a drinker and is paying the ultimate price for contracting AIH. For anyone new to the forum, he was put forward for transplant three years ago but was considered to ill even back then.

[Mare-M]

Hi, I’m very sorry to hear all this. God give you strength in these coming weeks and months and really from here on. I lost my mum recently and it’s just heartbreaking. And like you said seeing them deteriorate is almost unbearable.

I wish you peace and strength 🙏

[davianne]

Oh Dear Peeps, I am so so sorry to hear that your dear Hubby is on palliative care. The syringe driver with pain relief will keep him pain free. but your pain is a lot more difficult to deal with. At least you have a supportive family to help, and of course us here on the group, when you need a shoulder to cry on. I will say prayers for you and your Hubby, and I hope you can stay strong and look after yourself through this tragic time.

Love, David

[Hidden]

Dear Peeps's wife,

I wish you strength and send you love to endure this last and hardest part of your's and Peep's battles with AIH.

Phyllis

[ThreeSmiles]

Hi Peeps wife

I am so sorry to hear this.

Only thing I can add to what others have said is that when I was in Hospital once my wife was called aside by the Consultant and was told I was going to die. She didn’t tell me that until about a year later. I know it’s not the same as your situation at all but at that time it was for my wife ☹️. I can only tell you that I remember little except one night waking up at some point and thinking that’s it then and thank goodness for that.....

So yes it is much worse for you I feel than for your husband. I hope he is not suffering too much.....

I also hope you can cope OKish. .🙏

Miles

[Megbird]

I am sorry to hear what you and Peep are going through. It is a sad thing to see someone in so much pain and there is nothing you can do to help. You are a very supportive person towards him and I am sure he is so proud to have you as a wife and a friend. Keep going and continue reassuring him that you will always be there for him. Prayers and love to both of you and the whole family.

[Hidden]

Good morning Peeps7,

Sorry to hear how difficult things are for you both right now.

I am sure our lovely forum members will reach out and support you.

Our helpline is also here if you wish to chat with a liver nurse. The opening hours are Mon-Fri 10 am -14.45 pm on 0800 652 7330.

Alternatively , you can contact

britishlivertrust.org.uk/su...

I have also included links to our living with liver disease information

britishlivertrust.org.uk/wp...

Please make sure you look after yourself too.

Best wishes

Trust9

[Hidden]

Hi

I really feel you both. You are both in my thoughts and prayers 🙏 as are your family too. With all my love Lynne xxxx

[Lilyrosemarie]

So so sorry. I have been thinking of you. Try to stay strong for Peeps, I'm glad you have him home. Take care of yourself too xx

[Peeps7 in reply to Lilyrosemarie]

I often think of you too and your little dog, how are you coping with your life? Love Anne xx

[eekk]

I am in the same situationas you with the person I care for sent home on palliative care although we are still plodding on that road nearly 3 years on.

At home on pain relief . Hugs

[Lindc]

I also am in your position at the moment although I am the one with cirrhosis, compensated at the moment. My husband has lung cancer and is being taken into our local hospice soon. His pain is being controlled and he is calm and accepting at the age of 86. We are lucky. I really feel for all you are going through, to see someone you love in pain and distress is worse than having it yourself. All good wishes and strength to you for the future. Lindax

[Peeps7 in reply to Lindc]

So very sorry to hear about the agony you too are going through. I so hope you have friends and family around you to support you, but it does not diminish the agony. Very much in my thoughts, Anne x

[Hidden]

So sorry to hear this

It is good to have supportive family around during this time.

Thinking of you both and sending only good wishes.

Mary

[kyia]

So sorry that the road has led to this point. The uncertainty must be really stressful on top of everything else. Take care of yourself and you are both in my thoughts x

[Grank]

Granks and I are devastated for you.

I will pray you have strength for the days to come.

Who better to care for him than the person he knows and loves best. The best we can wish for at the end is to be surrounded by love. You will both draw strength from that.

Susan

[Peeps7 in reply to Grank]

Thank you Susan for your kind words. My love to you both, Anne x

[Vicky65]

I am also in the same situation, my husband on end of life care with DNR since last November ARLD , it

has been up and down ever since , currently up so don’t ever think things cannot improve , take care

[Peeps7]

So very sad for you, you are in my thoughts, and thank you for your encouraging words. Love, Anne x