Finding support for carers: Apart from... - British Liver Trust

British Liver Trust

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Finding support for carers

Terry28 profile image
Terry28

Apart from this site I have had no support at all for caring for my totally dependent husband

He has diagnosed in February with stage 4 liver cirrhosis,alcoholic hepatitis and bilateral pneumonia

Since being home he has been in bed ,breathless ,high pulse ,BP very low.

Wednesday I felt he was becoming more unwell,I phoned my GP explaining how sick he was ,I was also worried as he hadn't had his bowels open .I was crying for help ,all she did was ask a pharmacist for a laxative.

The next day I felt he was worse,despite him saying he was fine ,I called 111 who sent a doctor out,he was diagnosed with sepsis from infected ascities

I just feel I'm left on my own to cope .while I don't want carers tending to his physical needs ,it would I feel be helpful to have a health professional call occasionally

19 Replies

My heart goes out to you. I had no real support either apart from the wonderful people on this site. It's 5 years ago now & I am a much stronger person. If you're ever in doubt then phone 999 as is your right, they are a great help & will talk you through everything. Might I also suggest that if you're unhappy with the GP then ask to speak to the practice manager & explain how you feel. Your GP should be looking after your husband & you. Hope this is f some help. xx

Terry28 profile image
Terry28 in reply to h0b0

Thankyou ,he is out of itu now and transferred to the liver ward .Haven't been aloud in before ,but am aloud one hour a day now, I will be able to perhaps push for a discharge plan this tome

Hi Terry. So sorry you are feeling unsupported as hubbies carer. I was in the same boat. However l did feel l wasn't as alone as a had built a good relationship with the doctors at our local surgery. That must have been 15 years ago now when my hubby 1st became ill. Sadly those doctors have all retired and GPs are working for us at a distance so it must be much harder for you. But it may be worth speaking to your own GP about the lack of support you as his carer is receiving? I sympathise greatly. But we are all here for you as best we can be. Laura x

Feeling in the same boat. My husband was diagnosed with decompensated liver during Covid restrictions last summer he instructed the staff not to tell me anything. I subsequently found out from he’s discharge summary. Until Friday he has been in denial, He told me he was upset with he’s consultant as she had the audacity to tell him he may only have 1-3 years to live. He continues to drink. He now wants to sell the house so he has enough money to keep on drinking the house is in he’s name.

BLT were great and advised me to call my GP and explain the situation.

At my wits end one day I had a telephone conversation with my GP where I broke down totally, she Coolly told me there was nothing she could do for me with regard to liaising with he’s Gp and I had to make him tell me what was wrong with him.

Good luck

It's unreal how their is just no support out their ,and your left to get on with it

You poor sole it's heartbreaking and damn hard work trying to cope on your own. I am truely so so sorryL xx

Feeling it today x thank you 🙏🏼

Have you actually written letters on behalf of your husband to the GP and liver specialist giving his consent for you to be given details of his illness going forward and the drugs he has been prescribed? It may be worth doing so now and in a quiet moment, discuss with your husband how important it is for his on going care that he signs this letter. It was a battle for me too because he was so much in denial but when my hubby was in hospital being detoxed l managed to get him to sign. This way l could have conversations with the docs which really was a great support to me at times when it got very tough. L xx

Thank you you’ve been really helpful.I’ve known how ill he was but because he was in denial and part of that denial was he knew I wouldn’t be happy about he’s drinking I haven’t. But given what he recently told me I feel I can contact them. He’s in a bad place at the moment and I don’t see him giving consent. X

Oh they can be so stubborn can't they? They don't seem to understand what suffering they cause their loved ones do they? I found l needed to be 3 steps ahead of him all the time to make everything that little bit easier for me. All bank accounts in my name only to stop the ransacking to buy booze, kept his pension details and life insurance policy in a fireproof tin. Had all outstanding debts consolidated into 1 loan and his credit card in his name only and once he was too ill to work, PPI made the monthly payments. I know it sounds mercenary but l had to think of mine and my children's future security and l am so glad l did. Everything, including the PPI, did exactly what it said on the tin. I hope things start to improve for you and if l can help with anything please ask. If its something personal which you prefer not to discus on the forum, the trust will have no issue with you sending me a private message.

Best wishes to you and all you other carers muddling your way through it all the best you can

Laura xx

Thank you,, that’s really lovely of you x

Trust1 profile image
Trust1Administrator

We are sorry to read how unsupported you feel.

Please see our 'Patient charter' that details the care you should expect to receive if you are diagnosed with a liver condition;

britishlivertrust.org.uk/li...

If you would like a chat please call our nurse team tomorrow 10am to 3pm on 0800 652 7330

You are not alone. Take care.

Thank you much appreciated x

Terry28 profile image
Terry28 in reply to Trust1

I phoned GP surgery yesterday ,to complain about how sick he was,and how I felt unsupported,they have promised ,to look out for his discharge and send a GP round when he gets out of hospitalAt least on this hospital occasion I can go in for an hour a day ,and vonsult with ward staff etc ,lockdown has made this journey much harder I think

On a update they have drained his ascities today and so far removed 16 litres,he said his organs ,including his diaphragm have been misplaced ,he is having a CT scan tomorrow ,to find the source of the sepsisComplaining of pain as his muscles have been stretched around his organs

Tia2021 profile image
Tia2021 in reply to Terry28

Thinking of you, sending lots of strength xx

laura53923 profile image
laura53923 in reply to Terry28

I'm thinking of you too xx

Trust1 profile image
Trust1Administrator in reply to Terry28

If you need a chat you could call the nurses team on 0800 652 7330 we are open until 3pm.

Thinking of you xx

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