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

(29 Posts)
doughnutty Wed 03-Aug-11 20:43:55

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 sad.

ttalloo Wed 03-Aug-11 20:48:38

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.

Bunbaker Wed 03-Aug-11 20:52:19

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.

Northernlurker Wed 03-Aug-11 20:55:04

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?

therugratref Wed 03-Aug-11 21:03:24

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.

doughnutty Wed 03-Aug-11 21:10:08

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.

doughnutty Wed 03-Aug-11 21:19:04

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.

Northernlurker Wed 03-Aug-11 22:43:13

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.

chipstick10 Thu 04-Aug-11 07:38:31

doughutty you have my sympathy. The horror came flooding back as i read your post. I lost my dad to copd at christmas. He wasnt even diagnosed until 6 months before he died. He went down hill really within those 6 months but his rapid decline was due to complications due to other ongoing problems. Social worker was a total waste of time (i ended up having a massive row with her)and you wont get anywhere if your mum and dad dont fall into certain brackets. I think its difficult to try and put plans in order as circumstances will dictate. Hugs to you and your family.

ClaireOB Thu 04-Aug-11 13:38:54

I don't have any experience with copd but just thought I'd mention the British Lung Foundation helpline. They might be of some help regarding dealing with GP, social services.

doughnutty Thu 04-Aug-11 19:01:58

Sorry I haven't been back. Thanks for your kind words and advice. Will look at BLF website Claire
Went to see mum this afternoon. She is not at all well. Certainly worse than the last time she was hospitalised. Don't know why she's still at home with only my dad to care for her. She looked awful and her breathing sounded like a rattle. Don't think we'll be able to discuss what care she wants (or doesn't) given her state today although we know she hates how she is existing.
My sister has spoken to social work who were helpful but said it'll be at least a week before mum can be assessed. Neither of us think she'll still be at home in 7 days time. My sister was able to arrange for a pressure mattress and a comode which she picked up from the hospital today.
Going in again tomorrow to rearrange her bedroom to make room for the comode. But she hasn't eaten for three days so not sure it'll be needed. She looks so frail. Must weigh less than six stone now. I wish I had the strength to take the pain away. When you see a loved one in this much misery it makes you wonder how anyone thinks euthanasia is a bad thing.

noarguments Thu 04-Aug-11 23:18:37

No personal experience really, but just sending good wishes your way. I'm quite shocked that there are no carers going in to help your Dad with all this. If she does get admitted (at which point the assessment you've arranged will probably be put on hold), you should definitely talk to hospital social workers about putting care in place before discharging her.
In my area they have (or at least I think they still have) a specialist COPD nurse/matron in the community who exists to support in these sorts of situations.
If she's not eaten for three days she must be so weak, and that's without the effort of taking every breath.

MrsGerardButler Thu 04-Aug-11 23:23:19

Unfortunately I can only echo what the other posters have said about COPD. It's an awful thing to watch someone go through and when my gran had it, she would be admitted to hospital more and more frequently with chest infections, pneumonia etc. I wish I could offer you some positive news about it but I can't. Sorry about your mum.

georgie22 Thu 04-Aug-11 23:31:14

I work in palliative care so have looked after many patients with COPD. As you say people do generally have a pattern of infective exacerbations of their disease when they can be very unwell, but often rally round. I'd second what noarguments says about a community matron and specialist nurses - I'm surprised that this hasn't been put in place before now. Your mom does sound very unwell so a palliative care referral may well be appropriate at this stage. It may be that district nurses can look at night care etc. for your mom if she stays at home to help you all out.

So sorry that you're having to deal with this at what is already a difficult
time post birth. Really hope you can get some help soon.

seb1 Thu 04-Aug-11 23:56:17

So sorry about your mum it is very hard. My mum had COPD which in the end caused heart failure.

alistron1 Fri 05-Aug-11 12:18:07

Hi, so sorry to hear this. My MIL has had COPD for about 10 years and reached 'end stage' 4 years ago, however before xmas she was diagnosed with lung cancer.

She too, for about a year, has been on o2 and nebulisers at home and over christmas she contracted flu and we thought she was going then, but she rallied around.

However over the past 4 weeks things have been pretty bad. She started getting quite confused, then stopped eating/drinking, became very anxious etc...

My DP has, along with his siblings, been caring for her for the past few weeks. It took a week or so to get district nursing care/hospice support sorted out. And they've been fantastic. They've sorted out a commode, a hospital bed and other bits of kit.

Over the past week or so MIL has lost the ability to swallow and has been very agitated. On Monday she went on a syringe driver of morphine and a sedative and we are now waiting for the end.

It's been a rollercoaster few years, intensive care admissions, hospital acquired infections etc and we've been told to expect the worst a few times. This past few weeks though have just been different.

There is support out there, if palliative care is what she needs now then ask the GP for a hospice referral, our local hospice team has a social worker who can lead on arranging a care package etc... Given your family circumstances it may well be very difficult to care for your mother at home. I've seen how incredibly hard it's been for my DP over the past few weeks and he has 3 other siblings and none of us have new babies/toddlers etc. Also he's a teacher so for the past 2 weeks hasn't had to worry about work etc. The hospice team, and the district nurses, have been invaluable in initiating 'difficult' conversations with MIL and FIL over the past couple of weeks.

I have an idea of exactly what you are going through at the moment, if you want any advice/support please PM me and I'll be more than happy to try and help.

doughnutty Fri 05-Aug-11 18:09:12

ali seems we are in similar situations atm.
Spent whole day at mums. She's not responding at all now. District nurse came in and seemed amazed mum was as bad as she is and this was the first time gp had asked him to visit. He said that although social work should be dealing with things, he couldn't leave her (or us) in that state. He said he'd arrange for someone to come in morning and evening to check on her and freshen her up. Told us to call gp though as she probably doesn't have long. Few days at most. Gp came and, after deciding to keep her at home, arranged for a syringe driver which means we don't have to try to get her to swallow any more pills.
Been a traumatic day frankly and selfishly I hopeshe goes tonight. Sis and I washed her and changed her nightie and bedding before anyone came today and I don't ever want to do that again. She would hate this.

noarguments Fri 05-Aug-11 18:22:13

What an awful awful time. I know that this isn't the time, but this sort of thing (lack of communication I think mostly and things falling between health and social care) makes me so angry - your poor family.
You are doing a fantastic job.

therugratref Fri 05-Aug-11 18:25:39

Oh Doughnut. I am so sorry you are going through this with so little help. Glad the district nurse has given you some support and your mum has got a subcut driver, it should help to make her more comfortable. It is hard enough going through this in a hospital where the professionals are doing the care. I hope your mum has a peaceful night and its not selfish to wish her suffering over, its very human.

chipstick10 Fri 05-Aug-11 20:32:22

Doughnut am sending hugs and prayers to you and your family. Hoping the end is peaceful and painless for your mum.x

alistron1 Fri 05-Aug-11 23:15:29

Hi doughnut, over the past couple of weeks I have had to wash/change my MIL and I know that she would hate that. Despite all the drugs she's having a severe case of 'terminal delirium', despite the big family and hospice support we are at the end of our ropes now. It's very hard.

We are also hoping for a quick and peaceful end. I told my DP about you and your wee baby...he sends his best wishes to you.

doughnutty Sat 06-Aug-11 20:28:57

Thanks to you all for your support and kind words.
Mum passed away last night very peacefully and mercifully quickly. So glad she didn't suffer long at the end.
Seems like the wrong thing to say ali but hope it's not too long for you, your DH and family. Sending much love xx

Neverlandpirate Sat 06-Aug-11 21:31:17

I'm so sorry to hear about your mum doughnutty , I hope that you are ok. I am glad that your mum didn't suffer long, and hope this will give you all some comfort now.

RichTeaAreCrap Sat 06-Aug-11 22:21:05

So sorry to read about your mum doughnutty but so glad she passed away peacefully and without suffering too long at the end.
My thoughts are with you.

chipstick10 Sat 06-Aug-11 23:19:33

Doughnutty, so sorry for your loss, hold on to your happy memories. xx

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