End Stage COPD

I don't really know if I have a question or whether I'm just looking for someone to listen, I suppose I'm hoping there's someone that's gone through the same that can offer any words of comfort. My dad has had COPD for many years and is in end stage COPD (no one has told me this but I've looked at the symptoms and he's there). He's on 24 hour oxygen, severely breathless even when resting, he has a wheelchair to get around, can't sleep and has been admitted to hospital 6 times since February. He gets chest infections regularly and they hit him for six! He's in hospital at the moment. My mother is caring for him and I can see the toll it's taking on her. I'm struggling to cope with watching my father deteriorate so badly, as are the rest of the family. We get told nothing by doctors, only that they're treating him for an infection. I've looked at prognosis and it's not good for end stage COPD but this is only from looking online. I don't know what I'm looking for from posting this but feel better having written it. Sorry if it's off topic or shouldn't have been posted because it's not a question.

11 Replies

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  • I can not tell you anything medical but I can sympathise with you and if writing this has helped you do it as often as you feel you want to. You are not alone many people need this forum so please if it helps keep coming on.. I am sorry to hear of your poor father and understand the terrible strain on you and your family. I nursed my Mother with Lung Cancer until she died. The BLF will answer any questions you may have so ring them tomorrow. Take care.

  • It will help to talk to someone and find out more, which is why the BLF have their helpline. Open 10am to 6pm weekdays, call them on 03000 030 555 and they usually arrange for someone to call you back.

    Don't believe all you read on websites, get the right information if only for your own peace of mind. Lots of horror stories out there, especially on the American sites for some reason.

    This site is here to help everyone and if you feel better just for a letting a bit of the stress out in writing about your dad then that's something good. If a few of us can offer advice about talking to the helpline and words of understanding then perhaps that helps you too.

  • Tonka I am not going to argue with you. Your father may be end stage but please don't take this for granted. Quite a few of us on here are on 24/7 oxygen, often experience severe breathlessness and get repeat infections. Whilst this shows a degree of seriousness please do not assume this is the end. The best advice has already been given - talk to the experts on the BLF helpline. Have you also considered asking to speak to your dad's GP or consultant to ask for things to be properly explained to you? Some of the web sites are horrendous and truly terrifying. Not all of them are factual though. Whatever the outcome, I wish all of you all the best. Come back as often as you wish to.

    Mary

    xx

  • Agree with Gordon and Auntymary. You can't believe all you read online so get what info you can on the BLF helpline and from the hospital your dad is in. The right information is what you need to have as a family. You don't need to ask a question on here to get answers and support so all the best to you and hear from you again sometime. xx

  • Hi Tonka ,

    I agree with the other replies and can only emphasise the need to get proper information on your dad's particular condition and severity so you have a basis to work on and are more definate when trying to get things done for him .

    The other things i have found important are ....... being comfortable and having everything as easy as possible to do myself ( losing independance can be negative but some enjoy being waited on , depends on the person ) . Having everything as clean and dust free as poss . regular , small meals as a big meal can reduce lung capacity while filling stomach . Good nutritious food , lots of vit c , possibly b complex and d , good health shop will advise , no immune boosters while on steroids though as counter productive . fresh air , outings etc when possible , visitors and rest time when needed . keep away from people with colds etc . hand gel use and possibly salt water gargle and nasal wash . be aware if any products make breathing worse ( perfume , cleaners etc ) lots of love and hugs xxxx. hope it helps . xxxx Dinny xxxx

  • OH YES !!!! and get as many aids from support agencies as possible , grab stick , commode if necessary , grab rails , wet room , stair lift .............. etc. xxxx Dinny xxxx

  • Hi Tonka

    I am sorry to read your dad is unwell. There are lots of things that can be put into place to help your dad. Palliative care to make sure he is getting the right medication and support, hospices can sometimes offer pain relief and complementary therapies. Have any care packages been put in place to help him? Social Services can also be called in to do a homecare assessment - looking at any aids or adjustments such as raised toliet sit, hand rails etc. They can also do a carer's assessment - checking what support your mum needs - respite etc.

    End stage COPD doesn't necessarily mean that your dad is going to die soon, everyone is different and end stage COPD can be managed.

    Being in this situation can be extremely difficult and distressing - Helen our counsellor can give emotional support over the phone. We can offer different advice and support - we can discuss what care is avalable and also coping when a person is dying and what to expect. I know this is difficult to read - we are here Tonka so please do call us - 03000 030 555.

    Best Wishes

    Jo

  • Hi I agree with all that you have been told on here ,all I would add you say your dad's in hospital at the min ask to speak to the main nursing staff dealing with your dad and explane to them how you are feeling and what can be done let me know how you get on x Jackie

  • I am sorry to hear your dad is very unwell and in hospital.

    I have to agree with others on here, ring BLF . I would also recommend you book an appointment with the doctor that is looking after him, get hold of the senior nurse looking after him, You are entitled to answers, at least your mum is. Do be careful what you read, it can be frightening without needing to. Most of all try and stay well and strong for your mum and Dad,

    Best wishes to you and the family

    xx

  • Thanks for all the responses it's a bit overwhelming but reassuring to know that there are some caring people about. I'll take the advice and ring bfl for a chat and I know that I need to speak to his consultant to get some answers. With regards to support from social services, my mother has accessed some and we have had modifications to the bathroom and stairs although he now has a bed downstairs. He has a commode and a wheelchair. However, I think it would be worth contacting them again as his condition has deteriorated quite a bit since his last visit from them. Thank you all again it means a lot :)

  • Hi Tonka,

    My dad too has COPD and also IPF and is 'end stage'. I know exactly how you are feeling and what you are going through believe me. We too have had social services in and had modifications done in the home. His bed is downstairs and he uses a wheelchair to get about. It has also taken a toll on my mother but you know what Tonka, we wouldn't have it any other way. We love being there for dad and doing what we can to help like I am sure you do and we keep positive as much as we can. We laugh alot together and spend as much time together as other committments allow.

    We are making memories now and enjoying the time we have. A pallative care team have been in to offer support and I don't know how long dad will be with us but he is a stubborn man and a fighter and he will not give in too easy! And besides as far as we are concerned he aint going anywhere, not for a while anyway.

    I cry at times and I know my mum does too but we won't show dad. we have to be positive for him. There will be plenty of time for tears later. All we can do is make him comfortable and say yes sir no sir, three bags full sir when he barks his orders lol. We have to have a sense of humour, it helps to get through the day. No one knows how long we have......according to statistics dad is living on borrowed time..........and we will keep on borrowing thankyou xxxxxxxxxxxxxxxxxxxxxxx

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