End Stage COPD and heart failure

My 88 year old father is currently in the Ulster Hospital Belfast with end stage COPD and heart failure. My 85 year old, disabled mother and I were told by the consultant yesterday that there is nothing more they can do for him in hospital and he will be sent home. He is very tired, has suffered from severe oedema with liquid pouring from his legs, breathing difficulties, anxiety and depression. My mother and father would both like him to be at home. The consultant said he should be on a low level of oxygen as his oxygen levels can dip down very low even lying in bed.

I live in France as I also have COPD but the air / life style in the Pyrenees has meant far fewer exacerbations. It does mean I cannot be on hand in Belfast long term.

Please has anyone any tips on how to ensure adequate care for my father at home. The consultant had to inform us that there was no round the clock respiratory service so the frequent all night visits to A&E may be difficult to avoid.

8 Replies

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  • How sad for you, your mother and your father. The only thing I could suggest is that you telephone the helpline at BLF and ask their advise. I am sure they will be able to help. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. Good luck, with much love and kind wishes TAD xx

  • Surely the hospital has to ensure that his needs can be met at home before discharge. There should be social workers attached to the hospital. Suggest they are liaised with before he leaves. In fact should refuse to allow discharge until services put into place.

  • I am sorry that you are all in such a difficult situation.

    My elderly mother who lives 250 miles away from me, was in hospital at Christmas in Wales. She was not allowed home until a care package was put in place by Social Services, she now has carers in three times a day and meals on wheels.

    She also has an alarm system with a emergency button which she wears.

    I would ring the BLF helpline too. Best wishes to you all

  • So sorry to hear about your poor dear father but I agree with Bevvy, something has to be put into place before your father is discharged from hospital. He needs constant care and this cannot just be left to your mother. You are with them for a little while but will return to France at some point. I do wish you all well but please get something put in place. Take care. xxxx

  • My daughter done an end of life course have said the respiratory team comes in to administer the drugs to make them comfortable & will also sit with them during the evening this is in the UK thou ,

    I would tell the hospital without this care you will not be able to have him home .

    There should be a social worker or someone you can talk to in the hospital .

    Hope this helps take care God bless you all. X

  • Thank you all for your support. I have managed to sort out carers from social services three times a day so we should have dad home soon. The sister on the ward had previously refused my mother access to the consultant andsocial workers. Dad was sent home two weeks ago and my mother was NOT told he had end stage COPD and heart failure. She was told he could dress himself and he was being sent home. Poor dad's oxygen levels kept dropping so low mum was not told that when oxygen levels dropped brain recall went. He couldn't dress himself, wash himself, walk unaided.

    I am sorting out some respite for my mum. She doesn't want to leave dad but has to be able to get to the doctor, dentist, shops etc. should this be covered by social services or not?

    PS I am frightened as I too have COPD and it seems like I am looking into the future.

  • I know where you are coming from. Fear and sadness are what they are: what else can we do but feel courage and joy instead?

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