Anyone have any experience of respiratory failure in emphysema?

[vipersnest1]

If you have, I'd really appreciate your experience - DM has been finally categorised as having emphysema after several years of COPD.
I took her to see a consultant of respiratory medicine recently, and he asked her about whether she wanted to have the BIPAP (I think this is the right thing - a tight mask that forces a breath after she has started to breath in?) again. She said no (she found it very unpleasant when very ill three years ago - fair enough, it's her choice). The consultant said it was likely (I know it's a bit of a crystal ball gazing exercise) that she would be in respiratory failure within the next six to twelve months.
I know the theory, that the lungs can't take in enough oxygen, nor expel enough carbon dioxide.
I would just like to know what this looks like for a family member. It's likely that I will be alone and trying to help her (siblings live overseas).
If anyone has anything to tell me, I'd really appreciate it - I'm facing seeing her tomorrow and trying to have a conversation with her to make sure she understands the choices she is making.

I'm sorry to hear of your DM. I don't have direct experience of emphysema but I do have moderate lung disease and have heard a bit of what end stage is like. I'm not sure what you want to hear.

There are lots of ways the face mask can be made less unpleasant, but if she changes her mind later it might have progressed too far.

I would get in touch with palliative care team or discuss this with yr Gp.
If yr DM is adamant whe will not have bipap then she will be able to have medication to help her, maybe a syringe driver which will have morphine in (pain relief and midazolam to help with distress) but ask about this.

Just to clarify - she's not in respiratory failure yet, but the consultant said he thought she would be in 6 - 12 months.
I guess what I want to know is how long she's likely to linger once she starts to go into failure.

Can probably get that from a specialist but end stage i would say probably weeks rather than anything else.

My dad died with copd and my mum of another disease. Around the stage you are at both of them had a NHS HCP (it was a few years back and I can't remember what their job title was and who initiated, probably the hospital) who visited at home to talk about end of life planning. They were painful but very helpful conversations tailored to their individual illness, circumstances and talked about how they could take control and make decisions on stopping treatment, their quality of life, support they would need etc.

They initially left a leaflet with things to think about and discuss with family first.

My dad was very pragmatic and knew where his line was drawn for invasive treatment, mum was much harder as she almost refused to accept she was mortal but the conversation (my sister sat in on it) was still very informative.

Can you ask your gp to refer you to this? (We are in Scotland, but hope similar is available in England nhs)

Just to update (and thank people for their comments):
I spoke to DM today.
She's admitted that she would like help first thing in the morning as she always feels terrible for the first hour or two (I know now that's CO2 retention), but then made it clear she thinks that the hospital or some other nameless organisation will magic someone up - I will call the hospital clinic in the week to find out who I ask.
I've made sure she doesn't want BIPAP, and what her wishes are for when she becomes very unwell. It wasn't great, and she tried to change the subject. But, at least that's a conversation we don't have to have again, unless she changes her mind about something.
If you're wondering (and to pre-empt anyone asking no making me feel terrible), I can't do it myself - I've been off sick for over five months now, and physically can't.

Contact social services to discuss carers. A very good idea to get someone going through the door regularly from early on. There will likely be a cost. The hospital won't send someone out regularly and it isn't the remit of a district nurse (ex DN).

Ask on the elderly parent board on mn or contact age concern. Will your Mum be self funding? If yes you can contact a care agency directly. If no you need to contact adult social services for assessment of her needs.

@cptartapp and @Duracellbunnywannabe, thank you for your replies.
I have no doubt DM has the funds to pay and will need to. I know she feels very resentful about having worked all of her life, but that means she needs to pay now. It's a whole conundrum in itself, but something I've tried to prepare her for ('what have you worked for all of your life if it's not to be comfortable in your old age')....
I will definitely start the process. It's not just the help in the morning, but also that she's getting forgetful and occasionally confused and worried by things. Having someone there, even if only to keep an eye on how things are would be very beneficial.

You're right. She's worked all of her life to ensure she is safe and cared for in her old age.
Think about blister packs for medication which pharmacies can deliver, online shopping, a cleaner or gardner etc as things progress. A lifeline in case of falls. Anything to make both your lives easier. The rainy day is now here.
There may be community matron who can be involved for condition monitoring and support down the line, but tbh, I think your DM has to be realistic about available services.
It may be worth asking the GP for a memory assessment if memory is a concern. Make sure her will is up to date and consider applying for Power of Attorney if you don't already have it. The wait is currently several months experience
Good luck

Even if she is self funding ss can do a free assessment of her needs. Be warned many care agencies have long waiting lists at the moment.