Copd in hospital on ventilator

My mum was admitted to hospital 3 weeks ago. She has copd(not sure what stage but she didn't use continuous inhalers but has had a few chest infection in the last 2 month and she would get out of breath very eislily) they put her on non invasive ventilation first then changed to the one going in her mouth. Her condition got critical by then they found out she caught influenza A and pneumonia on top. She got sedated and had been on the ventilation for the last 2 weeks. She had trouble waking up but she finally did 3 days ago they they straight away they started weaning her off it so far every mode they have put her on she was fine today and yesterday she has been on the spontaneous mode and pretty much breathing for herself. She is still on antibiotics but she is getting stronger each day and she has only been awake for 3 days!!! The drs called us in today to tell us that my mother has very little chance of getting out of hospital and to have an ok quality of life based on how weak she is and how much support she currently needs and wanted us to agree if anything majorly goes wrong they would stop any further treatment as such additional life supporting medication or to bring her back if her heart stops. This morning we were so optimistic as each day she is looking so much better and now we feel there is not much hope but agree with dr that if she can't have the quality of life outside of her hospital we don't think she would want to carry on but generally she is an upbeat person who I don't think it would cross her head now that she might not want to live. She suffers with anxiety so there is now way we would attempt to have this conversation with her.

We just feel like tok hospital is now thinking of numbers and money rather than a person which is understandable from their point of view but just makes us feel very helpless

15 Replies

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  • Just to add she has had the tube switched to tracheostomy for the last 6 days

  • I think you have every right to keep your mum alive.Hope she pulls through and shows them all.xxx

  • Thank you. We are hoping for that too. It's just such a sudden turnaround from the drs as even this time last week while she was still struggling to wake up they were very hopeful and kept us positive. Now that she is finally awake suddenly pull us all down with this future prognosis basing it on how she is 3 days after waking up form a 2 week sleep

  • Akmama, I am so devastated to hear your story. Right now your head must be all over the place. I could've written every word, as your situation completely mirrors mine a couple of months ago, albeit my Mum wasn't ventilated etc. However, it is now so important to focus on what is best for Mum and ask as many questions as possible to determine the best way forward.

    Your thoughts and anxieties are common for someone in your position, and I can completely empathise. Please ensure you are clear on everything and do not under any circumstances be afraid to ask more questions. You'll be making decisions on behalf of your Mum, and I know you will want to be absolutely certain there's no alternative. Questions on resuscitation and end of life are so difficult to answer, but it's so important to be clear on what exactly is happening.

    Just be beside Mum's side every minute you can, hold her hand and reassure her. You don't have to talk to her about her deteriorating condition, just be her strength. Follow her lead, and go with it. If there's anything you're unhappy with in regards to Mum's care, speak up and know that you're not an inconvenience or nuisance.

    You'll know in your heart what's best.

  • Thank you Cosykitty! Your words are very comforting! My father is with us. My mum has been visiting us and fell ill while she was over here. She doesn't speak any English and so I had to fly my father over to be with us.It's making everything so much more complicated as she just wants to go home but we don't know is she'll ever be able to. My dad will eventually have to go back as will have to go back to work and I have 3 little children so my time is very limited as to when I can see her. Just feel so helpless

  • I'm offering a virtual hand of friendship to you at this most difficult time Akmama. It's a natural instinct to want to go home, and my mother expressed the same wishes. But unfortunately, it's not always possible. Add to that the language barrier, it must be very frightening for your beloved mother. I often wondered whether my Mum meant home as in her house or home as in her homeland (she was Irish). Hard to know what goes through a persons mind when they're so unwell.

    You are doing everything you can, and have a lot of other stressors with children to think about too. Stand strong alongside your father, as I'm sure he'll struggle to deal with what's suddenly happened. You will find the strength from somewhere, as we did. My father was incredible I have to say. So difficult to see your wife in such a vulnerable position.

    Please continue to offload here. You will definitely feel helpless, but just your presence will make a difference to your both your parents.

  • Thank you so much. My dad is a very black or white type of person and so struggling with the waiting and not knowing what to expect. We have both been incredibly greatful for the work of the hospital staff. Today's chat however made us a feel a bit uneasy about them and while before we would happlily accept anything they suggest it just woke us up a bit and made us realise we need to think things through and raise it if we have any objections

  • My husband was coming to end off life I found NHS staff disgraceful & I am s nurse myself & I knew what they staff should & shouldn't be doing & it was disgraceful . Good job I had nitsing knowledge otherwise my husband had off died a lot sooner than he did. Usually patients relatives ask how their loved ones are nurse answers he's stable ? I questioned everything o was s nightmare the staff wished I hadn't off been nurse as they gave me untrue answers example low blood pressure showing on the machine lie heart rate I would say how is he the nurse would say he's fine . Then I would say how is that possible when heart monitor trading is this & blood pressure is this ? Plus his respiratory the nurse say or documented 16 breaths per min . I would say it's 30 so why say it's 16 plus you havnt looked or used a gob watch or no clock on to time his resp meaning for breathing in & out per min , plus fluids I demanded Iiv fluids . Moral is staff should off been doing it not having me point it out to them . I gave up my nursing after this as just showed me that if I hadn't off had nursing knowledge god help my husband . Plus everyone realatives trust that nurses act on consultants orders instructions but nurses slap dash regardless off how hard they work it short staffed I've been their as a nurse . Sickned me to think had i off not been their . Or a patient who has no family would be worse as relatives all don't have nursing knowledge & take face value info from nursing staff just check eating fluids chart & ask for alternative if your loved one is can not take oral . Anyway end off I took my husband home a bed in my living room & community to give pain relief as that's all they was good for at the end . Their is only yourself & family who can meet your loved ones needs at the end off life & that's just being their take turns to endure your loved one is not alone & comfortable before they pass over . Plus I myself think I am coming to end off life copd sams anxiety & itd fearful but I have accepted & don't fear death so long as I see my grown up children & gran children around me poping in I get great comforts from that & if I didn't have that I would be frightened to death off passing . I am not frightened off dying just don't want to pass without anyone holding my hand . Plus above I mentioned my husbands care from hospital nurses so I am definitely going to die at home & I have expressed my needs & wants with loved ones & do not want to end up passing on the NHS wards however not everyone can or wish the same or want the same as me but all I can say just be their even if your loved o r is sleeping a lot & hearing is the last thing to go . Play tunes on a tape low off what your loved one liked when you can visit that helps loved ones when you crnt be with them & tell staff to ensure the CD player is on all the time in your absents . I wish you all the strength & good will & never give up hope or helpless . Hope I havnt added to your upset wasn't intensional just expressing & hoping to make sure you do not have to feel helpless & cd music is a good comfort played low for a loved one during passing over . Take care don't be to sad stay strong. Bernadette x

  • How sad for you and your family. I hope your dear mum recovers well enough to leave hospital and l send love and hugs to you. Xxxx

  • So sorry to hear about what you are all going through - sending best wishes x

  • This is very sad for you, and I feel so much for you. If you need someone to talk to you could ask to see the hospital chaplain. You do not have to be religious and they are not there to convert you, but they do provide an understanding listening and non judgemental ear, and they have time, unlike medical or nursing staff who don't.

  • Thank you all. Just called to see how her night went and she's been settled but again not slept. Does anyone know if this can potentially cause any problem? They changed her to a different ventilator machine but couldn't really explain how t is different apart from saying if she was to move ward at any point, she could take that with her. After yesterday's chat with the dr I'm more cautious as to what they are offering her and I must ask if her breathing was to temporarily detoriate, could this machine still offer the support for her?!

  • Thinking of you and your family, and praying for your Mum, Akmama.

  • Thank you Ergendl! X

  • Just to let you all know. After my initial post my mum decided she had had enough of being poorly and woke up and got stronger and stronger to all the drs surprises and wishin a week she had been kicked out of hospital 😊 she is almost back to normal we have been for a long walk yesterday and she gets tired easily but she is here and her mind is clear and back to where she was before. Hospital calls her a success story 😁 Thank you for all your support xx

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