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Carer looking after someone with COPD needs advice

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12 years ago•7 Replies

My MIL has emphysema and is on oxygen 24/7 she has recently gone to sleeping all day, is already under 4 stone and is now refusing food. Last time she had a 'flare up' and went to hospital (that wasnt a chest infection) the doctor told her to go home because there was nothing they can do. When I call the doctor out it's the same thing or they send antibiotics without seeing her.

Am I right in thinking that it's just a matter of time? Sooner rather than later?

The reason I ask is that I feel pretty helpless and if I don't inform the doctor if she gets worse and something happens I don't want the guilt of feeling 'negligent' but at the same time if there's nothing they can do ... any one have any advice?

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7 Replies

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12 years ago

Hello, do your utmost to get her referred to a community nurse who will do everything ha is both best and necessary. Try to put your mind at rest from what you have said you are the only person who is fully up to their responsibilities.

Getting in touch with the BLF is another good option.

Take care,

Chris

12 years ago

Thanks Chris, I was wondering why she doesn't have a nurse especially as she is on oxygen, I don't have nurse training so I feel kinda lost. I will ask the doctor to refer one to her.

elian12 years ago

tatavee, please give the British Lung Foundation Helpline a call tomorrow, they're open 10am-6pm. Their number is 03000 030 555 and the call is @ local rate, even from a mobile. Their nurse(s) will be pleased to offer what help and advice they can.

12 years ago

as a Carer you are entitled to support yourself, please insist that your GP gives you some. As Chris said the Commuinity nurses are great & you may also have a Community Respiritory Nurse in your area. I have found my Husbands Resp Nurse has been amazing with supporting myself. The GP's themselves don't want to know

jeanghost12 years ago

My husband has COPD and was not eating very much. I think that the medication alters their taste buds. His eating has improved he has been prescribed nutritional drinks which helps make up for any meals he does not finish..

I agree that the doctors do not have much sympathy.

We do not actually have a nurse but he goes for an oxygen assessment about every three months. He is on oxygen 24/7 the same as your MIL.

I agree that you should try to get a respiratory nurse.

Good luck and let us all know how you get on.

Jean

12 years ago

Thanks for the advice.

I rang the doctor this morning and told her I would like a community nurse or someone to come out regularly rather than me phoning all the time. She said no need she will come out when needed. I explained to her I don't have any nurses training but I don't think she understood my meaning, that 'I' don't know WHEN to ask her to come out especially as everytime she does come out (or go to the hospital) they say they cant do anything.

She did come out to assess my MIL and was more concerned about her dry skin rather than the bedsore on her face (she only sleeps one way) and just advised my MIL to eat more! well thats easier said than done, it's not like I haven't tried. When I pushed about the sore on her face she said she would get out a district nurse to assess her for a hospital style bed.

She also mentioned palliative care to my MIL and said she would discuss it with the consultant before deciding on that.

Jean I'm sorry to hear that. I have had letters for MIL to go to these assessments but she says she's too ill to go so I have to cancel them all. It's complete madness that they can only be assessed at the hospital. Just before Christmas I cancelled one and the receptionist was quite indignant and told me if she was that ill I should get the doctor out! The doctor had only just left and told me to cancel it.

She is trying to eat but she falls asleep about 4 times through the meal as she runs out of breath, the last time she had meat she choked, so we are down to mash and rice pudding etc, she has fortisip but the doctor informed us today that there isnt as much in them as the last lot she had (which she hated the taste of).

I honestly feel like a small boat in the middle of the ocean.

12 years ago

Hello all,

As the BLF's family, friends and carers project development officer I'm moved to read these posts. It is so important that you feel supported whilst you're giving your all to support your loved ones.

To echo what Elian said earlier, the British Lung Foundation Helpline is open 10am-6pm. The number is 03000 030 555.

As well as nurses who can advise on the care for your loved ones, the counsellors and benefit advisors will be pleased to offer help and support.