Advice on ending Mom's pain.

[Dagmara]

My Mom is in the ICU with liver cirrhosis. She's not on life support however. She is in a lot of pain and is crying. My sister asked me what we should do. The doctor had given us an option to take her home. I asked her if whether her pain will lessen if we bring her home. The doctor said that if he take her home he would remove the tubes and give mom some medications to relieve her pain and then she can pass away peacefully. What should we do? Can somebody give any advice?

[Isabelle2]

Oh my poor love, I am so so sorry for you and your family. If the dr suggested it willingly then I would seriously consider the option. I imagine there would be nurses who would pop in to make sure everything is ok. It would mean though that the responsibility for your Mum would rest on your and your sister’s shoulders. Do you think you two could handle that? Do you think your Mum would prefer it?

My mum died in hospital, in a caring but sparse, formal setting. She didn’t die of anything liver-related but I know if we had had the choice my Dad and I would have seriously considered taking her home. My best friend’s Dad died of cancer at home with his wife and 3 daughters there. I know my friend was happy it happened that way.

Whatever you decide I know you will take the best option. You must do what you can so she is comfortable and feels loved.

Sending you, your sister and your Mum so much love. Stay strong and message when you want.

Isabelle xx

[Dagmara in reply to Isabelle2]

I'm not sure about anything. I'm unable to sleep at night. I feel like I'm gonna get a heart attack. I don't want to see her dying before me and I've decided that if there will be no hope at all, then I'm gonna lock myself in my room for some time and not get out. I don't want to see her dead body. Maybe I'll put my headphones on and listen to some music so that I won't be able to hear people crying outside. I know I sound cruel but I don't want to see her like that.

[Isabelle2 in reply to Dagmara]

I understand. The thought of someone leaving us is scary. If you are totally sure I suggest you have an honest conversation with your sister, explaining to her that you love your Mum so much but are not sure you can nurse her. Then the two of you can decide how to proceed. It’s true that in hospital they will make sure that she has as little pain as possible.

Take care

Isabelle xx

[Dagmara in reply to Isabelle2]

Like I said, I'm not sure about anything. I'm still hoping that we might be able to save her. I sent an email to Dr. Diana Jurk who had successfully tested a cure for NAFLD on mice. I asked her if she has tested it on humans. I'm waiting for her reply. She hasn't replied yet. I'm hoping she replies to my email soon and gives a positive reply at that.

Article link: express.co.uk/life-style/he...

[Paulbryant1963 in reply to Isabelle2]

I totally agree Paul passed away in hospital and I know I wouldn't have coped if he had of bn at home. I'm still grieving badly atm but trying my best to get through each day. We scattered his ashes on Sunday and I know he was round me. I hope she is strong enough to cope as losing a mum is extremely tough x

[Isabelle2 in reply to Paulbryant1963]

I’m so sorry for you and hope that you find the strength to carry on and later to enjoy life as Paul would have wished. I hope you were able to scatter them somewhere you both loved. Isabelle xx

[tid27 in reply to Isabelle2]

tough one at the end of the day, have you asked your mom what she would prefer,I like others lost my mam to non related liver disease and my mam was stubborn she insisted on being at home and who were we to argue lol. All the family there after she passed of course no one wants to see it, but she was dertmined it wasn't gonna be in hospital.I think you and your sister need to have a serious talk only you can decide, I'm sure others have been in in similar positions as I say it's a tough one.

[Hidden]

Dagmara, this is going to be one of those decision that only you and your family can make.

There's not going to be a right or wrong answer to this upsetting dilemma. But if I was in your shoes, I'd be wanting to make this a collective decision made by those that both know and love your dear mum. It also has to be about what is best for your mother, and what her wishes are? I totally understand how seeing her in so much pain may make you want to do something about it, but is there going to be someone available 24/7 to care for her. And, in the final moments, there needs to be more than just one of you present at the time, in order to offer support each other, and not have to face the end on your own.

From the hospitals point of view, there most likely nothing more than can do for her, and only offer her pain management. I hope the hospital isn't pressuring you, as we all know about the shortage of available beds especially within ICU.

I think that everyone who uses this site on a regular bases will be sadden at this terrible time for your dear mother. Be strong Dagmara, you are in all our thoughts.

[Dagmara in reply to Hidden]

My sister and brother in law think this doctor's just being straightforward but I don't trust this doctor. My sister, brother in law and my father will be there by her side. My mother can't handle the pain anymore. She wants to live but her body is giving up on her.

[Paulbryant1963 in reply to Dagmara]

Oh I'm so sorry I am thinking of you and please u can contact me if u wish to talk. I know what it's like and u have a very difficult time ahead of you. Stay strong hunny and I'm thinking of u and sending you strength xx

[Dagmara in reply to Paulbryant1963]

I don't think that I deserve to be happy after everything I put my mom through. I'm still hoping that she survives.

[Paulbryant1963 in reply to Dagmara]

Listen my lovely Yr mum will be so proud of you and will always love you unconditionally you do deserve to be happy and your there with and for Yr mum and she knows that. Don't be too hard on yourself and take one day at a time xxxxxx Donna.

[Hidden]

So sorry you're in such a terrible position. It's a situation I hope I never find myself in but my heart goes out to you and your family in these challenging times.

P.S. is a transplant not an option?

[Dagmara in reply to Hidden]

The doctor said she won't be able to survive the complications that come with a transplant. That her pulmonary vein might get blocked, there might be a lot of bleeding and that her sodium level might fall.

[Millie09]

Oh sweetheart. I feel for you. I was in a similar position with my own father, not liver disease but secondary cancer.. it's such a difficult time.. both myself and my sister and extended family could no longer watch him suffer, as heartbreaking as it was we chose to end the inevitable for his sake not ours.. Oh my how we lived in hope day after day but alas nothing could be done.. dad was given oromorf and on a feeder for medazolam, this kept away any pain and slightly sedated but knew we were there. Best decision we made. As i stillg greive now .. always will , we just could not keep him suffering.. Take each day as it comes.. you will get through this I promise.. I don't know how i managed it at the time but i did..we all did..godbless you xxx

[Dagmara in reply to Millie09]

I feel like God(if he exists) hates me.

[Millie09 in reply to Dagmara]

Now why do you think that?.. your just in a very bad place and whatever silly thoughts are going on in your head is completley normal..I blamed god, i blamed myself, i blamed the surgeons who removed dads lung for not giving him chemo of which he could not have anyway as he was in no way strong enough.. has the doctor actually told you theres nothinh else they can do for mum? .and if she is being left in such pain why? .. have you asked for a second opinion dagmara just to help your mind? Xx

[Dagmara in reply to Millie09]

The doctor gave us the choice to decide but he also told us whether we wanted to torment her by keeping her alive. We are continuing with the ongoing medications. I had consulted another doctor. That doctor called up our current doctor. They both talked and now that doctor is saying the same thing. We can't even do a liver biopsy because the doctor is saying that it will have side effects. I really want to know the type of liver disease mom has. I have sent an email to Dr. Diana Jurk who had successfully tested a cure for liver cirrhosis on mice. I asked her in my email if she has tested it on humans yet. I'm waiting for her reply. I really really hope she replies and most importantly says something positive.

[Millie09 in reply to Dagmara]

Oh wow, they actually said to let you torment your mum and her pain!! not much compassion at all.

No wonder your head is goimg round in circles. Demand and demand over and over with all.the answers you want to your questions.

I made sure i did with my dad and my sister was worse than me . If mum is in pain whilst taking meds then they are obviously not doing anything for her ..Well that's what i would presume. We stopped all of our dads meds when he lost his ability to swallow. Your mum is quite coherent though isn't she ? Not sleeping all the time but able to communicate and eat or drink. ? .if that were so i would be very reluctant to take her home.

Don't get me wrong, i am no medic or hepatologist so i cannot really pass judgment, but think on about digginh for answers.. good luck and hope you recieve news soon xx

[Dagmara in reply to Millie09]

I should have written "asked" instead of "told". It's my mistake. The doctor asked her. The doctor didn't say "let mom be tormented." He questioned my sister "Do you really want to torment her?" What he meant was that by keeping her alive, we would only be tormenting her. But I think he could have said it in a better way. Actually day before yesterday my mom progressed a lot. So they shifted her from the ICU to another room. That's when her condition started to worsen again. Now she's in pain again and my sister is asking me what we should do. I asked her to ask Mom. I'm confused. Mom doesn't want to be in pain anymore. She told my sister "what's the point of living if we have to suffer" Yes, she does understand what we're saying. I'm praying for her condition to stabilize and then hopefully we can take her to Dr. Diana Jurk if she ever replies positively to my email.

[Millie09 in reply to Dagmara]

Oh i see well.i agree with you there the doctor should have put it in a better context .thing is with any liver disease. Be it cirrhosis or NASH, things can change so very quickly. From good to bad or vice versa.

Your mum is in pain, so she should be on morphine or something similar to ease this for her.

I know if i were in so much pain with no pain relief I would be wishing I wasnt here just to find some relief!!.

I know what way i would go if it were my mum god rest her soul, but the decision whatever you and your family choose is entirely what you feel you want to do .. not anyone else.

I will pray for you all xx

[Dagmara in reply to Millie09]

Thank you so much for your prayers.

[Millie09 in reply to Dagmara]

any time.. xx

[Hidden]

Hi Dagmara. I have written to you privately with my own experience which may help you all.

Take care

Laura x

[suzylincs]

Sending you hugs and goods wishes,you're in my prayers.xxxx

[Barnetaccounts]

Hi Dagmara, when I was in a coma my wife was told that keeping me alive was akin to torturing me against the “human rights act”, I was in a coma after a failed liver transplant. My wife refused to be bullied (thankfully) and I am still here 19 months later. I was never in pain, but couldn’t believe the pressure they put her under to effectively free up a bed. I can’t help sit here and think that the level of pain could be managed albeit with stronger meds. I do concur with others that passing on in hospital is not something I want to happen, and it has been the subject of quite a few conversations with my wife. Ultimately I will be happy to move on wherever they feel better with. At this moment you all need each other for support and help. I really wish you well and am still praying for a positive outcome to your situation.

[Angelann69]

How awful. I'm so sorry you are going thru this. Why aren't they taking care of her pain in hospital? I don't understand. Are then not using the IV for pain control? I feel so ignorant but do you have a hospice type program that will come to your home with pain medication? Her doctor needs to give you the whole story. Why they aren't controlling her pain and why taking some meds home, would be better. I'm also sorry for you who is looking to them for help. You are in a terrible position.

[Purplelamp]

Ask for morphine if she is in pain and cant ask herself. Dont be fobbed off with co codamol as these are huge and my Mum couldnt swallow them. I knew when it was the right time to ask for my Mum not to be actively treated anymore. If you are not at that stage make an apointment with the consultants and get them to explain clearly her situation. If you take her home make sure you contact the GP beforehand and get the care in place BEFORE you leave the hospital. A nurse will bring pain relief ready for her and they will bring all equipment to the house. Hospice at home saw to my Mum and they were lovely.

If you feel worried about taking her home then dont. I only did it because my Mum insisted on going home but everyone is different and your Mum might want to stay in hospital. If she does dont let them pressure you into taking her home. Thinking of you xx

[Hidden]

We are really sorry to read that your mum is so poorly.

The forum members have given some great suggestions and support, we would add that if your mum decides that she wants to come home, then ensure that the discharge team have all the nursing and specialist help in place to help you.

We send you warm wishes

Trust1

[Purplelamp]

I would ring the GP as well to check the care is definitely in place. The discharge team told me they had arranged care 4 times a day. That was the agreement to me taking my Mum home. When we got home nobody turned up and I spent a frantic 24 hours on the phone with everybody denying knowledge of our situation until the GP stepped in and arranged care.