Can someone talk to me about COPD - my mum is very unwell

[doughnutty]

She's had this for a number of years now. She has oxygen and a nebuliser that she uses constantly and is also taking morphine. She's been hospitalised twice since xmas and has had numerous episodes recently which have her bedridden for days at a time. GP was round today and has upped her oxygen and organised for the district nurse to come in tomorrow to put in a catheter.
My dad is her carer but he is also in poor health (had a heart attack 8 weeks ago, had stents fitted and awaiting gall bladder removal).
Me and DSis live close but she works 2 jobs, 6 days a week and, although I'm on maternity leave, my kids are 20 months and 6 weeks and unable to be there as often as I'd like. (The house is not toddler friendly at all).
Anyway, this is not about how guilty I feel. I really want to know what's likely to happen next and what timeframe we have. I am not the strongest person emotionally at the best of times and hormones are still rampant, but I need to know what I'm dealing with. Mum is very low understandably and was talking today about just wanting to go to sleep but not wanting to leave her DGCs. I feel so helpess and .

[Northernlurker]

You poor thing. It is very hard. I agree thoughthat now is the time to try and be brave enough to talk to your mum about what she wants. A good death is not a contradiction in terms. It can be done. Talking about it doesn't make it come any sooner or put it off but it can help all of you at this hard, hard time.

[doughnutty]

rugrat - spoke to sis tonight about contacting social work/OT as situation has changed again. They currently have no help. They have someone who cleans for them but they pay for that themselves. GP is a waste of space if I'm honest. But so are we! Just keep hoping she'll get better or it will just go away. None of my family are very good at facing things or admitting there's any problems or indeed, asking for help hence the anonymous internet forum being my first port of call even though DH is sitting in the same room with me.

[doughnutty]

Thanks TT
Bunbaker - you're right, but I need to hear it. She has rallied in the past. Sometimes remarkably so but she's never been so down before. I think she feels worse since DD was born because she knows she's never going to be fit enough to hold her for long let alone babysit which she would love to do. She's such a social animal too and can't get out the house. I used to take her and my dad out. He'd push the wheelchair and I'd push DS in the buggy but now there's 2 DCs I can't get everyone in the car (let alone a double buggy and wheelchair in the boot)
Northern - might do that. Good idea. Or get DSis to do it. She's less likely to bubble on the phone.
Need to get to bed now - got night feeds to do. Will check back at 2 am. Thank you all.

[therugratref]

You have my sympathy COPD is a awful disease. The fact that your mum is oxygen dependent on morphine and requiring a catheter suggests to me that she has end-stage COPD. I hope that the GP is organising some care support for your mum and dad, given your dad's poor health it sounds like he should get some help.
Time frame for end-stage COPD varies and it is usually a chest infection which leads to rapid deterioration. I know this is really hard but I would recommend that you/GP/dad have a discussion with your mum about limits of care, ask her what she wants. Palliative care in the community or admission to hospital with simple support or escalation to a HDU/ICU level of care and non-invasive ventilation.
Having these discussions now can ensure that your mum gets the death that she might want. It can also help you in your discussions with Doctors near the end as to how to proceed.
I am sorry If this sounds very clinical but in my long career I have seen many people die from COPD and these are the practical things that can help. You must be so tired.

[Northernlurker]

It's very hard for anyone to ever be definate about timescales. Sounds to me though like your mum could do with some more palliative care input. Can you ring the GP yourself and ask them to talk to you in general terms about what's happening?

[Bunbaker]

I am so sorry you are going through this. My mother had very bad COPD and it was hard watching her struggle for every breath. It could be the summer weather that has made your mother feel worse lately. A high pollen count was very bad for my mum and she used to suffer quite badly in warm weather.

I can't give an idea about timeframes because sometimes when things look really desperate she will rally round.

I also don't want to give you false hope because my mum ended up in hospital more and more frequently just before she died. I know its not what you wanted to hear, but that is how it was for my mum.

[ttalloo]

I don't have any experience of this, but I just wanted to send you a hug and some moral support. Hope someone comes on soon to be of more practical use.