Hello everyone. I wonder if you can give me any helpful hints about helping someone living with COPD? My mum's been living with COPD for a long time - she's now over 80, has very little mobility left and has been offered oxygen therapy. It's always been a bit difficult to support her because she is very private about what doctors prescribe and advise (for many years she didn't tell the family about her diagnosis). I respect her privacy but it's very worrying to see her so ill. For the past few months she has been feeling very low and tired. She can't really move much around the house, sleeps poorly and relies on my elderly father to prepare her food and look after her. She's a bit secretive over the drugs she's been prescribed and about her medication reviews (she says she doesn't get much help from doctors/hospital appointments - but I don't think that's right). She told me she'd turned down oxygen therapy as it was only to protect the health of her organs and she isn't concerned about that. She said the doctor (or her COPD nurse?) said it wouldn't give any relief to her breathing difficulties or to help with her tiredness. I'm not so sure. In short I'd be grateful for any advice on whether oxygen may help her tiredness and also for any general advice for caring and supporting someone with COPD (particularly one who may not wish to share too many details!). Should I try and take a more active role in her treatment for instance? It would be great to help her improve her quality of life. Many thanks to you for reading this far - it feels a relief to share this at least! Neil
Advice for relatives of someone with ... - Lung Conditions C...
Advice for relatives of someone with stage 4 COPD
Hi neil_ and welcome to the forum. I’m sorry to hear about your mum and her breathing difficulties. Being short of breath is tiring and debilitating so I would imagine oxygen could help. It’s a good thing to protect the organs too.
Try and have a one to one chat with your mum if you can and see what happens. You can only do your best and I wish you well. Xxxx
Hi I have Bronchectisis and have been told that I am also in stage 4. I get very short of breath at times but mostly my oxygen at 4 litres per minute allows me to still enjoy life. The oxygen helps my organs. Especially my brain and my heart, my skin doesn't break down.
I have little mobility but I had lost the majority of this before my lungs ever had a problem. Like you I agree that how people live their lives is down to them but when this impinges on other people's lives and their quality of lives this "independence" does reduce by some degrees.
Kind regards, Rib
Hi rib. Nice to see you x
Hello Mandy 😊 . I have started popping in now and then in between lung infections. As I have had a repeated string of them from Dec up until now it has meant that I am back almost permanently 🤣
Hope you are managing ok,
Best wishes, Rib
This is the first time I've been on here for a very long time I also am constantly in and out of hospital every 10 weeks or so I have iv antibiotics for two weeks and then got to exercise to build my strength up again waiting for that call. Hope to see you again sometime. Take care x
I had been looking at your Profile to see if you were posting. It is a shame that you don't live in Nottinghamshire as they allow IV abs at home. I wish more Health Trusts would sign up.
Try and keep strong 🏋️♀️ Rib
Oh we have a service called ART TEAM. They can give you iv at home usually through a mid line but unfortunately I've had so many iv antibiotics that the midi lines only last a few days and my veins are in bad shape so it's difficult recannulating me plus The Art team only see you twice a day which wouldn't work for me. I only got out of hospital last Wednesday after a 2 week admission and 3 of my iv bags ran for 2 hours each !!! So I was having 777 hours a day attached to iv...... I do worry about it all. Last week the doctor mentioned putting the cannula in my foot !!! My arms were black and blue and sore and I had an upset tummy from new antibiotic so the words foot and venflon Was a bit too much and I cried like a baby. What could go wrong will go wrong with me Rib I must have been a bad person in my past life . X .....The Art Team is a super service though they can free up a bed for someone who needs it and hospital is the worst place for us with all those bugs and infection
You are certainly right about not wanting to be in hospital. I would put up with a heck of a lot rather that those places.
Ann told me years ago on how she had to get a line into a chap who had no useful veins in his upper body. Although I have never needed to have that done I suppose it must be worse if you normally use your foot or feet. I don't use mine so I don't see that as so terrible.
Hi this is very difficult and I empathise with you. My father in his late 80's (with no serious illnesses) decided life was just too difficult any more, basically turned his face to the wall, stopped eating and died. He had lost the will to live. Nothing the family did could help him and we felt so helpless.
If your mother still has the will to live despite her illness then hopefully you can all encourge her to take all the help available. Spend as much time as you can with her and always be there for her, though I am sure you are anyway. It is basically her decision though and heartbreaking though it may be you have to respect this.
Is she getting any extra benefits to help with her illness? Then she can get carers to help your father out a bit. Good luck. x
Thanks so much - I really appreciate the time you've taken to read my post and reply. Your empathy is really valued - thank you. Thanks for sharing what happened to your dad - I'm sorry to hear this and expect that must've been very difficult for you. My mum puts on a brave face but she can be very irritable and difficult - talking to her about helping her with medication and other help is difficult as she can decide pretty quickly to stop the conversation and talk about something else! She can also get angry and snaps at us. This is pretty out of character and I put it down to her illness which beyond the physical effects must be worrying to her - I expect she is a bit scared - and she's probably angry that her quality of life has deteriorated. My brother and I visit and try to encourage my parents to get other help but they are fiercely independent and partly in denial. It's frustrating but I expect I won't be too different when I get to that age...! Thanks again for your reply.
hypercat54 has given you some excellent advice Neil, being 87 myself I can vouch for that. There comes a stage when you just want to be left alone but at the same time need your friends and relatives around you supporting you along the way you have chosen to go.
Thank you Don. I went through this with both my parents and it was very hard. x
I agree with everything others have said. Your mum wants to keep her problems to herself because she's always been a private person and I suspect she 'doesn't want to worry you!'
I think her need for oxygen was explained very badly. She really does need it for the sake of her organs. We're talking about brain, heart, lungs, stomach, kidneys and many more equally important. I'm no expert, but can imagine the effect on all these vital bits of us if they don't get the oxygen they need. No wonder she feels low and tired and sleeps badly. Oxygen might not help with breathing as such, but if it's keeping everything else in better shape, then it must also be helping to keep the lungs working more efficiently.
I've been on oxygen for 11 years now, and I know it's made a difference to me. It takes courage to go out and about wearing the cannula, but 99% of people don't even notice, and if they do, will tend to be helpful and considerate.
Of course respect her wishes, but please do your best to explain the difference that accepting extra oxygen could make. Your poor father could do with a break too I'm sure. I hope you can organise some extra help with the caring to give him some relief.
I'd say take as much of an active role as your parents will allow you. Perhaps get a little bossy and remind them that you are interfering because you want them both to still be around for a long time yet. I wish you the very best of luck - your mum is lucky to have you fighting her corner.
Stay in touch and let us know how you all get on. Jan 
Thanks Jan for your thought and advice - and thank you for letting me know about your experience of being on oxygen. It's really appreciated. I'm about to catch trains to visit her today and staying overnight. I feel very supported to start a gentle conversation with her now on whether it's time to re-consider her options. Thank you! Neil
Hi Neil. My heart goes out to you I'm pretty sure your mum would have been referred to palliative care. I was referred to them for symptom management . Ok about oxygen, yes it's true that oxygen protects your vital organs but it oxygenates the person too and although it dosnt stop breathlessness she will have more energy for one thing and she's probably getting headaches from her sats dropping so oxygen would help with that too. I'm on oxygen 24/7 and I hate but oh boy am I grateful to have it. How many litres of oxygen is she supposed to be on . .... Wiltshire farm foods may be a help , you would know they are having some decent meals and you can buy from them without a contract and it's not a charity from the sound of your mum she wouldn't be impressed with a charity helping......wiltshirefarmfoods.com/?gcl.... If there is no care plan in place you can call adult social serves at your local council if mum would allow help from them . She will be in inhalers for her COPD and possibly other meds like carbocistein etc but symptom management can look at that an social services can help with some light housework depending on where you are as it's usually a postcode lottery. Sorry I've gone on so long but oxygen could help her . Mandy
Hi Neil, look mate, your mum, might be old fashioned, she doesn't believe her children should be that closely involved in her personal care!
Her generation, as your mother, it should be HER looking after YOU, not the other way around!
My suggestion! Pull your dad aside...ask him if you can do anything, like mow the lawns, weed the garden, do the vaccuming! ME! I just took over those chores, NO ONE else was doing them, so, l did it all ,my parents had about 9/10 show & breeding dogs, we absolutely love dogs in my family. I used to bath them, walk etc. Move over, when l could see that dad need dog therapy, & would let him take over, I did the cooking, shopping, washing, laundry, just let dad look after mum's personal needs! There are things the son should not see, so, as to keep that respect between mother & son.
JUST PHYSICALLY BE THERE MATE! KEEP TELLING BOTH OF THEM ,HOW MUCH YOU LOVE THEM, AGAIN, AGAIN, & AGAIN. They are gone forever. Be there mate. God bless!
Thanks for the advice. There's a lot of truth in your comment about her generation finding it difficult to accept help - I think she feels guilty she isn't able to cook me a meal anymore and roll out the red carpet when I go to visit! I will carry on being there for her as much as I can. Thank you!
Ho Neil and glad you came forward for advice.You can certainly help your mum a lot by first of encouraging her to have the oxygen yes it will protect her other organs particularly her heart, but apart from that it will certainly help her breathe a lot more easily and also enable her to be more mobile. Her medication I should imagine on a daily basis will be the use of inhalers which she really must use as prescribed as they will help to keep her airways open. She will be feeling quite tired at times and may not always manage a full meal but that is all quite normal. Encourage her to exercise if only in a small way and if nothing else a small walk each day. I wish you well.
Hi Neil,
I am my 82 year old Mums carer and what you have written sounds very familiar. I had to tell my Mum that I was coming to every appointment with her if she wanted any more help from me because I knew that what she was telling me was different to what was actually happening.
For example; of course oxygen therapy is going to help her breathing difficulties and if the doctor feels she needs it then she does. If she relies on your Dad too much it will just drain him dry.
For a long time I felt like I was fighting COPD and also fighting my Mums denial whilst fighting to get the right care in place from her doctors.
I think she worked on the principal if you don’t admit you’re ill then you aren’t. Still does really but is now pretty much house bound and on full time oxygen etc.
I think explaining to her what was going on and what was going to happen helped a lot but took a long time.
The hardest thing I have ever done is look after Mum, basically it’s just me family wise; I have a brother who is worse than useless and no help at all. Luckily I have a wonderful wife who is there for me and there is Carers support groups and this forum for example. (I have to admit I have been off grid for a while myself; been very depressed myself and not doing what I am great at advising others to do.)
As you said, it’s just great to talk to people who know what you’re talking about.
Hope that made sense and if I can help please just ask. Regards
Phil
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