My Dad is 82, and was diagnosed in August this year. He'd been unwell for most of the year, then caught Covid in June and thankfully this led to some blood tests from his GP. He then collapsed and got taken into hospital where he was diagnosed with liver cancer. He has got 3 metastatic tumours, and was told he was too frail to undergo treatment so he was referred to the Palliative care team.
They initially said Dad had 12 months, but he's declining rapidly and is now struggling with hepatic encephalopathy which is causing more problems. He's confused, agitated and it's just my sister and I managing his care (on top of full time jobs) as he's in a rural area where care is problematic.
He is covered in an awful rash, sweats constantly, has had awful diarrhoea for weeks and has now been put onto Rifaxamin to try and control his bowels as he wasn't getting to the toilet in time. This is a horrid journey for him, and honestly I'm ready for it to be over, it's miserable watching someone struggle like this. I'm worried sick that we're not going to be able to manage as this progresses.
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JulesVee70
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The British Liver Trust has a page plus a downloadable brochure about planning for the future which includes end of life care issues which may be useful to you as you should not be expected to travel this journey alone or without support. britishlivertrust.org.uk/in...
He's under the local Palliative care team, and we had a video consultation with the Consultant this week which has led to a change in medication but they did say it would be at least a week before we see any significant change in the HE. I'm just scared because I have a feeling that we'll only get help in once he's bed bound ... the services are just too stretched.
Hi, I’m so sorry to hear what your going through. It’s so hard caring for someone you love and watching them go through this. I went through the same with both parents and it was tough.
Katie’s given good advice re MacMillan and Marie Curie. They were a godsend for me. I’d add a recommendation that you contact a local hospice. Our’s responded quickly and coordinated care between agencies, there’s a lot of help available that you just don’t know about. I’d also ring his GP and make sure they are aware and are providing what support is available from them.
Through the Hospice we had:
Community nurses visiting weekly increasing to daily, they involved:
Occupational health who brought in equipment including a commode which might help your Dad, mobility aids and finally a hospital bed.
Carers paid for by the NHS ( the finance side took a while to sort out but I wasn’t involved, the agencies sorted it out between themselves
Marie Curie sitters 4 nights a week towards the end.
Dieticians
Oedema nurses - to help with swelling.
The GP had their own paramedic who came to assess Mum whenever we were worried.
We live in a small market town so help is available in rural areas, you just need to know who to ask - try your nearest hospice and GP.
Re working full time - is your employer aware and supportive? Do they offer compassionate / special leave? Mine did and I had 10 days, which I know is very generous. Then my GP signed me off with stress and I concentrated on Mum. I visited daily to start with but moved in as she deteriorated. It’s good that you and your sister can share the care. You can’t do it all. Wishing it was over is perfectly normal - it’s horrible to see such suffering.
I run my own business, and have no cover which isn't making life any easier. I knew cancer was never going to be easy but I didn't expect it to be so hard this early into the journey. It's just rotten😢 I think it's time to start getting extra help on board though.
Has he been on any other antibiotics when he was hospitalised recently?
Sounds like he may possibly have a Clostridium difficile infection.
It's a hospital acquired infection and hospitals may be penalised if a patient gets it, they have to report it. (hence why some might just treat without testing)
Insist on a stool test to rule that out.
Rifaxamin does treat some types af C.Diff but not all.
Theres 2 other treatments, Vancomycin, or better still the very expensive gold standard "fidaxomycin" .
I had wondered about C diff, but he was hospitalised in August? I wonder if it's worth getting a sample tested though, it's making his life a misery. Thanks for the advice.
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