What an horrendous few days, greeted on Sunday by my eldest son at the door when I returned from work saying that Dad is really poorly and needs to go to hospital.
When I saw him I agreed, his chest was bright yellow, very swollen, and he was struggling to breathe, rang for an ambulance, gave all his details explained his history, they had an ambulance with us in 30 mins, he had bruising everywhere, god knows what he had been doing, and when the paramedics checked him out they said he needed to go to hospital. BP also very low. Blue light to hospital.
Admitted into a&e very poorly, scans, bloods taken, blood transfusions, clotting agents and lots of other stuff given.
Turned out he’s got internal bleeding from tearing a muscle in his chest. Doctors were and still are concerned about him, however he is starting to stabilise a little, however has lost some of his kidney function and they are trying to sort that issue, not sure at this point if it’s the liver or dehydration that has caused it.
Waiting now on a transfer to the liver unit at a different hospital. He told the Doctor this morning that he wants to come home, however he has lost some of his mobility, on all manner of meds by IV, and I don’t think he would cope well at home, he disagreed and told me to quit my job, he’s getting better slowly as he’s been rude again. Apparently we live on junk and takeaways, and he seems to have a thing for Macdonald’s, he told the doctor we have them most days ( we don’t) he was also ranting I do nothing for him, don’t cook, buy stuff, go shopping etc, and I don’t clean the house, etc.
So I said I do my best, work full time, while he won’t and doesn’t do a damn thing. He’s also been quite demanding and lazy in the hospital, expects me to feed him his dinner, help him get out of bed, call the nurses and is generally been rude. I’ve put him straight today, and told him if he keeps on I will leave. I also left when he had his lunch so he had no option but to feed himself. Told the nurse I was going to get coffee.
I have been doing 12 hours at the hospital but left early tonight, much to his disgust. Going in later tomorrow and will also be leaving early again, I feel like he is relying on me way to much and I’m not sure how to deal with it. I have told him he has no chance of been discharged home until he can actually do things for himself and he is so difficult at times.
Help what do I do, this is an absolute nightmare!
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Lils2019
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Hi, I don’t know the whole back ground to your story. Is your husband a drinker? I used to find my sister would get grumpier as she got ruder and grumpier when she was getting better in hospital as she was hanging out to get home and have a drink. Has he been tested for HE? Have they done a brain scan? My sister had a brain scan which showed considerable shrinkage and damage to the brain. It didn’t stop me getting angry and upset by her mean words but it did make me realise that even when not drinking I was no longer dealing with my sister. It was like dementia with glimpses of her past self. Can you speak to the psychologist or discharge planners and discuss a period of rehab? Assessment for home help? I am so sorry you are going through this.
Yes he was a drinker but hasn’t drink anything for 2 yrs 3 months now, has done really well.
He also does have episodes of HE and was diagnosed with it, is on medication for it.
I am pretty sure they will not allow him home until they consider him well enough, and able to cope. Pretty sure they will also involve the OT in his care for his mobility issues and waiting to see the dietitian again as well as he is refusing to have any protein drinks because they make him feel sick and he doesn’t want to be sick and have another bleed which I completely understand.
It maybe worth me going in and having a chat with his doctors, I have been present when they have done there rounds this time, as he gets confused and the information is usually mixed up, he thinks he only has 40% kidney function when in fact that’s what he’s actually lost at the moment.
sometimes they will be happy to have a quick staff meeting with you so you can discuss your concerns. My sister used to tell the discharge planners that mum (almost80) was happy to have her home and look after her even when mum had said enough was enough.
Thank you for replying, a care home is not something that he wants, and he’s not ready at the moment to be discharged from hospital, he’s been quite poorly today, he has admitted he wouldn’t cope at home at the moment.
They also need to sort out his kidney issue, and can’t treat the fluid retention until they have sorted the kidneys.
oh you poor thing, I would suggest taking this time for yourself ( the nurses and doctors will not take the same abuse as you are and all his medical needs will be met!) . Go in for half an hour maximum and as soon as he starts being nasty get up and leave and tell him straight that if he can’t be nice, you can’t visit. Talk to the ward sister/ charge nurse ( they will support you). I’m presuming he has a serious problem with his liver. The staff on liver units know all about the abusive behavior that can result. You can ring the next day and start going every other day but only for a short time. I know I sound harsh but I have alcohol liver disease and I’m very aware of it from that side! I’m here if you need to talk but my advice to everyone trying to cope with a person addicted to alcohol is to put yourself and family first! Only the person with the problem can help themselves ( I’m 8 years post my 3 week stay in hospital, it’s been a very long and hard journey and I still get days when I struggle x
that’s good to hear, did you manage to speak to the ward manager and or doctor, they really need to understand what it’s like when he’s at home. They have so much experience of how disfuntional and manipulative liver patients can be ( I don’t think anything would shock them). Take care of you.
Staff have picked up on the way he’s speaking to me, he tried it again tonight, and I told him straight, do not speak to me like that, do it again and I’m leaving, but he did it in front of the nurse.
The nurse stopped me as I was leaving to check in with me and asked me if he’s always like it, I told them he can be very rude, and always pull him on it.
So tomorrow he wants me to take in a grater, cheese, bread, and bananas. Apparently the nurse is going to make him cheese sandwiches 🤣🤣
He does try to manipulate me but I don’t buy it, and the nurses are trying to make him do stuff for himself. I get it’s difficult and he’s swollen and in pain, but he doesn’t try and that’s frustrating.
well done, it doesn’t matter how ill or how much pain a person is in, they have no right to be rude and hurtful. Good luck I’m glad the nurses are now on side
I’ve been back in tonight, and he’s been extremely hurtful and rude, yes I get he’s frustrated, in pain and probably scared but even so, I took a 15 minute break and went out for some fresh air.
He called the nurses to help move him, and we were chatting, myself and the nurses, and he was very aggressive and shouted at me. By the look on the nurses face I think they were quite shocked, left me feeling completely shaken, I told him that I was going to leave him to it, and that I had, had enough of the way he had spoken to me today, done nothing but criticised me, even about the way I had raised our children.
He’s been absolutely vile, no thanks for bringing in the stuff he asked for, feels like I can’t do anything right at the moment, he said to the nurses, there you go, you two are my witnesses, I have no idea what I’ve done wrong. I left the ward with tears streaming down my face.
I’ve decided I’m not going in to see him tomorrow or Tuesday, even though the doctors are doing the rounds and reviewing him tomorrow. I will ring for an update.
I’m so sorry he’s behaving like that, you are right not to go back for more abuse. While he’s safely in hospital, focus on your needs and wants and maybe start talking to your family and friends and make a back up plan for when he comes home ( he needs to be told in good plain English, that his behaviour will not be tolerated anymore. It’s worth talking to the nursing staff about everything, they might be able to organise respite care and they should get a social worker involved. There’s help for you too, it’s not just him that needs care. There’s support groups for families trying to cope with alcohol addiction. Please make an appointment to talk to the ward manager. Good luck, and remember you are more important and please accept all the help they can offer you.
If you 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)
Hi Lils, when Mum was discharged from hospital we got a referral for OH, who liaised with the community nursing team who visited every couple of days. They were fantastic and organised care when it became necessary. They identified when carers were needed before I’d recognised it myself. This was just at the start of Covid soI know things were different and we were lucky. Hang in there, just do what you can do and make sure professionals are aware of what the real situation is. If you need a break from visiting etc then take one. Is there anyone else that can support you?
We’re doing ok at the moment, I am back at work tomorrow so just something “normal” and getting back into my routine will help I think.
I have had a conversation with the lady that did the needs assessment for him last year, today, not through choice the ambulance service had contacted them saying he was struggling at home, apparently he’s left all day on his own, which is actually rubbish, he’s only left one or two days tops and he sleeps most of the time, he also has a telecare lifelink alarm he can press if he needs help when I am not around, and the house was cluttered and I wasn’t looking after him properly. The lady was really lovely, she already knew his history and told me to contact her if I was struggling and said she had no concerns at all.
He’s actually been transferred now to another hospital, he’s been in there before and it’s a lovely hospital, and the staff are wonderful. He’s got his own room, with a bathroom and walk in shower etc. I took him a tv over and some other bits today, so he feels more comfortable. He’s quite poorly though, still has kidney issues, swelling from water retention but until they can sort his kidneys they can’t address the swelling.
BP still fluctuating, and has lost a lot of his mobility due to swelling in his feet and legs.
So for now it’s just wait and see what happens with the kidneys and bleeding that doesn’t seem to want to stop. I’ve never ever seen bruising like it.
thank you for asking, I’m doing ok, he’s back on oxygen, and drips of Albumin, no plans at present to discharge, or even start planning, he’s still quite poorly.
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