How do you cope? My husband was diagnosed with cirrosis of liver in March 2021. He managed it well, not a drop of alcohol since, constant battle with the diet. He has had 2 hospital admissions with HE this year and they were frankly horrific. He takes lactulose, rifaximin daily as well as spirolactone. Prescribed Vit D. Last week he had 800mls fluid drained off his lung. His tummy is fit to burst but doesn't seem to be at a level where professionals are concerned and want to drain. He has zero energy, now prescribed iron supplements as anaemic and being investigated for why he is losing blood somewhere internally. I've accompanied him to every single appointment, he can't drive anymore due to the HE episodes so relies on me to transport. Was reviewed for a transplant in June but they said "Not right now2 as he had some outstanding physical issues they want to investigate and will review him again in Sept.
I'm broken. I'm worn out physically and emotionally. He has elderly parents who basically either don't comprehend his condition or don't care. His only sister has her own family and again doesn't get involved and lives a good 20 miles from us. He has no friends. So I am his only support, the only one who looks out for the HE creeping in, the only one reminding him to take meds, lactulose, make appointments, the one who sat in A&E then on the ward with him for 3 days on 2 occasions while trying to keep a house running and keep working in my fulltime job. My work is amazing and supportive but I have taken so many holidays to make hosp and Drs appointments I don't have many left.
How do others cope as I'm close to breaking? Any practical suggestions or even emotional hints or tips would help?
Thanks
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Teddog2022
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My utmost sympathies.....I hesitated to reply because I can't offer any encouragement - hitting a lowish spell myself. But I do recommend a therapist, mine has been a lifeline. Talk to your Dr or a helpline and see what they can offer. You are not alone 🤗Ewife
Hi there,I hear you! I completely understand what you are going through, as I am doing it all myself too!
We have 3 grown up children, all live at home and I do manage to get them to help out occasionally, even just doing the washing up is helpful right now!
I work full time, I run the house and everything that goes with that, go to all appointments and drive him as he also is not allowed to drive.
It’s hard, it’s difficult, but keep going, you are stronger than you think you are! Believe me, you’re doing fine, we all have our off days, and just go with it for now, if you need a rest or a time out, take it, look after you and your mental health too, you are important in all this too.
I, like you, have taken holiday days for appointments etc, it’s frustrating, but at the moment needs must I suppose.
I like walking with my dog too, it helps clear my head especially after a challenging day.
Having a chat with your GP may be helpful, also maybe a carers assessment by the Local authority, maybe that could prove useful in supporting you too.
Take Care x I hope things start to improve for you soon xx
Thank you for taking the time to respond. It does give some strange reassurance that someone else is going through this too although I whole heartedly wouldn't wish this on anyone. I took 6 weeks off with stress in May as my husband had just had his 2nd hospitalisation for HE and at the same time my Mam broke her hip. She lives alone and I am an only child so I moved in with her for 3 months and was caring for both her and my husband when he came out of hospital. It is just a case of getting used to this being what life is now and finding the best way through but its been really hard and still is and I think its probably going to get worse before getting better. I hope things level out for you, take good care and best wishes for your other half too xxx
Hi Teddog. I have been through it too and l can only reiterate what the others in the same sad situation have said.I lost my husband to this horrid disease 12 years ago brought on by too much damn alcohol and although we miss him, remembering the happy times, there was eventual relief to know he was out of pain and suffering.
Over time our lives seemed to rebuilt themselves, l continued to run my business and the children, then 11 and 17 still had places to be and things to do.
I surely wish for you a better outcome and that amongst the chaos you manage to put a little time aside for yourself, even half an hour a day to walk to blow away the cobwebs for a while.
Don't be affraid to insist on help from anyone around you. His parents will have their heads in the sand because they will be ashamed of what their son has done to himself and unless he is dumped on them, like l did with my husband, they will continue to be in denial.
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Hello, I was in this position all last year and totally understand what you are going through. It is utterly draining emotionally and physically. I really feel for you. We were lucky in that my husband had a transplant which took away the decompensated cirrhosis problems. I hope you will have this option too.
I found it really helpful speaking to the British Liver Trust nurses on their helpline just talking it all over with someone who really understands helps.
Maybe look at work as being a bit of respite so while you are at work you might be able to temporarily forget the problems while you focus on work.
Does your area have a carers centre who can advise you what there is locally to support you? Mindfulness classes help to temporarily to relieve the stress. Your GP might suggest talking therapy or counselling. You can also ask for a carers assessment which might open up other support options.
Can you get someone in to help with housework chores to take the pressure off you so you can do something for yourself in that time. I found taking myself off for a walk to clear my head helped.
Somehow we get the inner strength to cope, you will get through this some days are better than others. Take one day at a time. Make time for yourself doing something you like even if it’s only for a short time to help recharge your batteries
Your husband is very lucky to have such a caring committed person looking after him. Sending love and hugs to you.
Thank you for your kind words. We are at the start of applying for PIP so if granted it may resolve some of the practical things like transport and housekeeping to alleviate some pressure. I absolutely love my work and they have been incredibly supportive but some days I feel I can't even control how emotional I am, crying constantly which makes it difficult to function. Thanks again for your kind words and may your partner continue to have good health with the gift of the transplant. It must have been a long journey for you both. Best wishes xxx
Hi Teddog, i've been on a 10 year journey supporting my hubby who has cirrhosis, he was first diagnosed back in April 2012 - initially with potentially life threatening symptoms but currently stable.
As regards PIP - it can be a battle even with serious symptoms but perservere with it, make sure you evidence all the difficulties hubby has and all the help you need to provide him. My hubby gets PIP - Enhanced Rate Daily Living and Basic Rate Mobility and I get Carers Allowance with him being on PIP. We had to go to appeal tribunal the first time round when he score zero at face to face with a report that was nothing short of 100% lies. Make sure you get some supporting evidence from his doctors to prove how poorly he is and how it limits him. For our appeal we were able to get support from our local council's welfare rights service and subsequently I have used the amazing member guides from the website Benefits & Work for completing the paperwork benefitsandwork.co.uk/
- they lay out the information logically and show you how to describe things to maximise the chance of getting an award. Don't give in even though it's a battle.
We don't have a family and I am self-employed so a lot of your situation doesn't apply in our case but we've certainly lived a long time now with the roller coaster that is a cirrhosis diagnosis.
Hi Ted, I don’t have experience with a partner but I was caring for my Mum at the end of life stage of PBC. I’ve also supported Mum caring for my 96 year old grandmother with dementia. When Mum was on her knees with grandma she contacted social services in tears and they arranged 2 weeks respite care for her. Grandma went into a care home for two weeks.
With Mum I found that while she was still being considered for transplant no one talked about hospice support but I knew from my Dad that it should be available so I requested a referral. My Mums liver consultant was surprised, he hadn’t even considered it but transplant process and hospice can run in parallel. Hospices offer all sorts of emotional and practical support including advice on benefits which might help you reduce hours at work to take the pressure off.
Your husbands condition counts as a disability under the equality act 2010. This may give you entitlement to PIP for him and attendance allowance. I don’t know a lot about these but hospice will and citizens advice.
The hospice also arranged practical help with aids like perching stools shower chairs etc through occ health and liaised with the NHS and social services to put carers in place to support me.
Your GP should be able to refer to the hospice and other devices if you ask.
I hope this helps
Hi Teddog2022,
I sympathize with you. I was not working when my husband suffered liver and kidney failure in 2015. We were very lucky in that his kidneys recovered and his HE happened while he was in the hospital.
We are in the U.S., so our resources may not be similar and you have received what seems like some very good suggestions from those who know better what resources are available to you.
Just a note to let you know that if your husband develops breast tissue it may be a result of the spironolactone. He did not have rifaximin prescribed as that seems to be more usual in the UK than here.
I don't know how much lactulose he is taking, but you could check with his doctor and see if a change in amount or how often he takes it would be a benefit.
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