Cirrhosis update

[Bubbles201271]

Well here I am again, not quite sure what I’m doing most of the time but still plodding along.

Dad has stage 4 cirrhosis and as most of you know comes with a whole host of problems. I feel slightly more at ease this week then I have. He had a fall 2 weeks ago out of bed, spent 41/2 hours waiting for an ambulance on the floor had a blood test and found out his potassium was incredibly low and was told to take him in as ambulance would be 6 hrs. Spent 6 hrs in A and E waiting for a doctor to see him at this point I was just about going mad. Kept him n to get his levels right. Discharged, The OT was amazing that come out to see him she sorted more out for me and my dad than anybody had done in months. Now has a hospital bed at home which makes life a lot easier got other things sorted out including incontience pads I’d been waiting months for.

He has no appetite, constantly shade of yellow, has HE, very tired, no strength. I was told palliative care isn’t available. So little old me is doing the best I can along with carers that if I’m honest aren’t exactly doing their job but nobody seems to care.

For anybody ploughing through this mind field I applaud you

Jo X

[ThreeSmiles]

Hi bubbles Jo

What a sad story - another on here ☹️. It is mega hard being a carer - we wife and I - know. And there were two of us. We had supposed carers. There was a big long interview up front with both of us and the company that “run” the carers. It was basically mostly BS in retrospect I’m sad to say. Some of the carers were Brilliant but others couldn’t have “care”d less. Of course you don’t like to report them because who knows what it might be like then - if you weren’t there. In the end we tried to be there when they were there as often as possible but that kind of defeats the purpose!

It took ages to get her (MIL) into palliative care. It can happen but heck it didn’t happen until three weeks before she died. The Care home were fantastic though and the weight that was lifted off our shoulders was immense.

Hope you manage to get better help than you are getting at the moment. Keep hassling them (doctors, district nurses - the district nurses were the bees knees 👍) about the palliative care. Eventually they will come out and do an Assessment or two (it took in our case).

Good luck.

Miles

[Bubbles201271 in reply to ThreeSmiles]

Hi Miles,

Thanks for the lovely words, everything feels a bit like an up hill struggle at the moment. You sort one thing out and something else happens. I do love my dad obviously but it’s hard as well to think up until recently he was still drinking and what his putting himself through now. His just this fragile little old man now which seems to of happened overnight. Thank you for the advice as well. Anything at the moment is gratefully received

Jo X

[ThreeSmiles in reply to Bubbles201271]

🤞🤞 for you Jo.

[Hidden]

Hi

You are doing a remarkable job looking after your Dad. I've been in the role of carer and you do it out of love, I was emotionally exhausted but you just carry on don't you? I was lucky I had my husband and sons to help. I was able to offload to friends, this really helped. They were a shoulder to lean on . My family were great. You can pm me anytime of day or night if you need to, I will be there for you. Love and hugs Lynne xxxx

[Bubbles201271 in reply to Hidden]

Hi Lynne,

Thank you so much everything is a bit over whelming at the moment. I’m an only child and Dad has no friends to speak off as his lost them through drinking and his behaviour. My husband is really good he helps me and him out but it’s still mainly down to me to sort out everything. It was only cause he fell they picked up his low potassium. The array of symptoms he gets I've only got the doctor to call out if needed. I’m not a nurse so I’ve got no clue really if anything is really wrong other than what I see with my eyes. They just take him in hospital sort out the medical problem and send him home until the next thing arises.

His like a little fragile old man which seems to off happened so quickly. People don’t even recognise him now Lost so much weight and seemed to off aged 20 years.

Jo X

[davianne]

Hi Jo, I'm sorry to hear of your situation with your Dad. He should be entitled to palliative care if the doctors have said that they have done all they can to help him. Where do you live? I ask because in South Buckinghamshire, we have a charity "Rennie Grove Hospice Care" that had mobile palliative care nurses, and a Hospice home. My wife used to work for them, after retiring from her matron's job. there might be similar charities in other parts of the country. For respite care, have you tried Marie Curie? they are great to give carers a break. It's good that you have the hospital bed now, as it will stop him falling out. Is the district nurse visiting, as if so, they can action a full care package for your Dad.

You have a right to palliative care, but you might have to fight for it.

Keep up the good work looking after your Dad, and I hope you get the help you need.

Take Care,

David

[Bubbles201271 in reply to davianne]

Hi David,

Thank you for the reply, I spoke to my GP and had a care coordinator meeting this week and they’ve basically said I’m trying to get all the help I can. The GP said there is no palliative care available but thank you for telling me about the charity based places will look into it . Life is pretty tough going as I don’t seem to have much of my own at the moment but I keep going

JoX

[Hidden]

Good morning Bubbles201271,

I am sorry to hear life is so difficult getting the support you need. I am sure our lovely forum members can help with making you feel less alone.

The British Liver Trust helpline is available Mon-Fri 10am-14.45pm on 0800 652 7330. Your call will be answered by a liver nurse who may be able to provide a listening ear and support and guidance should you wish it.

Best wishes to you both,

Trust9