end stage emphysema and respite in a hospice

Hi all, my mum has end stage emphysema. she went into a hospice for respite today, they said between 1-2 weeks to regulate her breathing. her breathing is so bad but oxygen levels normally 92-94 so no oxygen needed. she is intolerant to most meds including nebs, she throws up. she takes 7.5mg prednisolone daily for life but they are always upping them when breathings bad. she has had small doses of morphine at home, but didnt help. she was so scrared and upset before going into hospice, it is a terrible daunting feeling she must have. when i left today, i phoned her and she said doc said if you were near death would you want to know and she said yes. the thing is no one actually talks to you about why her breathing so bad etc, i know they cant tell exactly, but theres me saying they will sort your breathing out and you can come home feeling better. i know she will die from this but am i kidding myself that they can do anything to sort out her breathing. im so upset at the thought of her in there.

17 Replies

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  • I am so sorry to hear your mum is so poorly. I am also sorry I can't give you any advise but would suggest you ring the blf helpline (click on the red balloon) in the morning. I am sure they will be able to give you some advise. Your mum is lucky to have such a caring daughter. Take care of yourself with love and kind wishes TAD xxx

  • thank you for your kind words xxx

  • Hi so sorry to hear about you mum wish there was somthing posative a could say ... you post says it al really my lung docs gps tell me nothing about my condition or stage

    All i know is emphysema is destrution of air sacks that convert air you breath to oxygen in your blood .. A dont like saying but there are two things can happen it will be her heart or respority failure

    Sounds like shes fighter and will pull threw might be infection or fluied on the lung but as sats seem ok might be infection

    Fingers crossed and wishing her well .. Cheers all the best

  • hi, thank you for your words, she doesnt have infection, must be just the disease getting worse, just wish i could help her. thank you xxx

  • Very sad to read your post, but rest assured your mum will be very comfortable and treated very well in the hospice and many people find when they've been in a hospice all their meds are reviewed and get regulated better and they do in fact come home feeling a bit better than they were. As you know though, sadly there is no permanent way back from end stage emphysema. I went through a similar situation with my mother many years ago and now find myself classed as end stage, though that can carry on for quite a long time and I am not as far along as your mum by the sounds of it. Like Tad, above, says she is lucky she has you and all you can do is spend time with her when you can and be there for her. If she's anything like my mum, who was adamant she was not going to the hospice, after a couple of days she'll be saying I wished I'd come here sooner!! Very best wishes to you both. Always someone here to "chat" to if you feel the need. Sadie xx

  • my thoughts are with you and your mum god bless you both xxxxx

  • Agree with Tad itA would be of help to you to speak to one of the nurses at BLF. Also agree your dear mum is lucky to have a loving daughter like you - a credit to her.

    My thoughts are with you both.

    love cx

  • Dear treacle, So sorry your Mum is going through this, its so sad she is unable to tolerate any medicines to help her breathing. I hope the medics can come up with something to make things easier for your Mum. I have heard of oxygen being given to palliative care patients even when blood 02 levels are showing ok, but its something only your Mum's medics can advise and try her on, 02 is not necessarily going to help her breathe easier though.

    Please ring the BLF helpline for further advice on this I am sure they will be able to advise you further about any concerns you may and what other help may be available. As mentioned previously click on the red balloon top right for contact details of the helpline, the phones are manned normal working week days between 10am and 5pm.

    My thoughts for you and your Mum.

    Best wishes BC

  • So sorry to hear of your mum's situation, alrighttreacle. And it must be dreadful for you to feel so helpless and hard for you both not know what will happen. Thinking of you and your mum and sending love, jean

  • Thinking of you and your mum and wishing all the very best for you both. Lovely comments above, I second everything they say. XX

  • I know how worried you must be,went through similar with my Mom,13 years ago, Try and stay positive for you and your Mom, Sending you both love and special thoughts,Heather X

  • I lost my dad to emphysema. He to was having difficulty in breathing but he didn't like hospitals and wouldn't go into one. He passed grim pneumonia nit it was caused by his COPDw if he had been in hospital they maybe could have helped him. What I am trying to say is that your mum is in the right place and as much as I know it's horrible for you to see her so unhappy in the hospice and three fact that she didn't like it either, but it is the best pace for her and with all the care and attention she will get, she will be made more comfortable and hopefully they will be able to manage her breathing better. I know how you feel though. Its not nice feeling so helpless but in my opinion, you are doing the right thing and I hope your mum s breathing improves. Keep smiling for her and keep positive.

  • Hi Alrighttreacle. I have lost both my parents in the last seven years. One seven years ago and one two years ago so I know what you are going through. All I can say is be there for her and try to put on a brave face. I'm really sorry you have to be going through this. It is a really hard time. You take care and I hope you feel you can come and talk to us again.

  • You must feel so helpless alrighttreacle and my heart goes out to you and your poor mum. Rest assured she will get all the right care in the hospice. Stay strong. xxxx

  • Just to let you know that although I can't really express my thoughts for you and your mum she is in a place that understands and can deal with everything you are both feeling. If my love could help it is with you in buckets. I have been in the same position many years ago and I found that I just had to put my faith and trust in people who knew what they were doing. It has comforted me every since that I did my best xxxx

  • I am in end stage so I have some sense of what your mother is going through. I lost my mother to cancer in my early thirties so I know what you are going through. I fervently hope the stay is just a respite and that that she will be coming home better.

  • Hello treacle, Thinking of you and your mother, it's hard I know. But she is in the best place, we were in hospice last Christmas, and although it was a sad time, the hospice was a lovely place, and the nurses we're lovely . I know how helpless we felt, but having someone to listen when things get rough, will help. There are some lovely people here, who will always listen. Take care and our thoughts are with you always. Nannyb xxx

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