Information on COPD

Airyfairy12

Hi can anyone help me?
My mother was recently diagnosed with COPD, she has been a chain smoker her entire life so it didnt come as much of a surprise but its still worrying.
She didnt go into too much about her diagnosis, just that its early stages, she also seemed quite happy about the diagnosis - I think she thought she was going to be told she had lung cancer so hearing it wasnt this made her feel a sense of relieve.
With that said, im not sure if they really explained to her what the illness is as she wasnt taking it very seriously, she continued smoking heavily for weeks after the diagnosis until she recently went for an appointment - I dont know what they said to her but she gave up the smokes and is now vaping instead - not great for COPD but its a start atleast. They must have given her a fright as she wasnt taking it seriously at all before this.
I dont know what to expect with this disease as my mother has no interested in talking about it and I dont think the doctors have really explained it to her so I get the impression that she doesnt know much either, she's the type to ignore problems and not try to improve things, she'd rather just ignore it and carry on as normal so wouldnt want to know anything about the illness. She wont do anything to help herself, her diet and lifestyle is generally terrible, she doesnt look after herself at all and wont look after herself no matter how much myself or other family member try and persuade her too, its so frustrating sometimes I just want to shake her, she's passed these bad habits onto my younger sibling and its maddening.

Ive researched COPD online but get allot of conflicting information so I dont know what to think. Can anyone explain it to me? What do we need to be prepared for? How long does it take to progress? What happens during each stage? Are there treatments available? She will not engage in exercise or healthy eating so thats out of the question. Will this be a financial burden on the family? My mother wont have much of a pension and my father has no pension, they haven't prepared for retirement and this falls on mine and my siblings shoulders as they will need us to provide for them so this illness is an added strain on all of us. Its just causing so much stress and frustration and my parents dont really seem to be bothered.

GalwayGrrrrrl

https://www.nhs.uk/conditions/chronic-obstructive-pulmonary-disease-copd/ This will give you some information. In terms of financial burden make sure your mum has a medical card if she’s entitled to one- she’ll probably need inhalers to relieve symptoms and they can be expensive. If she doesn’t have a medical card get her to ask her pharmacist about the drugs payment scheme- you only pay a max amount for medicines per month on that scheme and it’s not means tested. It’s good that she has stopped smoking, it should slow down the progression of the illness a bit.

looksee

COPD is diagnosed at 4 levels. Do you know what level your mother was diagnosed at? There is a list here of the different levels. https://www.webmd.com/lung/copd/qa/what-are-the-four-stages-of-chronic-obstructive-pulmonary-disease-copd-and-the-symptoms-of-each

No two cases are the same. My husband was diagnosed in stage 4, terminal, which has a life expectancy of around a year, he lived 4 years. During these four years he was increasingly incapacitated, he could not walk more than a few yards, he ate smaller and smaller meals as he did not have the breath to eat, towards the end he became very confused as his blood oxygen levels were low. He had difficulty conversing as he did not have enough breath.

Like your mother he did nothing to help himself. He was supposed to go for walks, do exercises and eat healthy food. The food bit I dealt with, but for the rest he fooled himself that he was doing the exercises etc - he would do them very occasionally, he did not walk.

Doctors can only do so much, they can recommend lifestyle changes - which is all that can be done for COPD - but if the patient does not make the changes then there is nothing medicine can do beyond inhalers etc. These don't treat the disease, just help the symptoms. What was probably said to your mother was 'you are going to die'. As bald as that, it was said to my husband and his later reaction was 'they don't know everything'.

Its a sad and rather frightening way to go, a gradual decline that the patient may only start to respond to when it is too late. Usually there will be chest infections, for some reason my husband only had I think one and that was at a very late stage. Usually patients go from one infection to the next.

Life expectancy can be significantly improved - especially in the early stages - by following advice and being pro-active. She may be invited to take part in a clinic where she will be taught breathing exercise and other self help information. She must understand that no medication is going to make it go away. It is entirely up to her how she gets on and how much she is prepared to help herself. You may have to decide when to just stop nagging and let her live with her own decisions.

It is hard on the family, you can support and encourage, but in the end all you can do is watch. All best wishes to you.

Airyfairy12

Thanks Looksee, im so sorry to hear about your husband.
That was really helpful, I feel like I need to hear first hand experiences as the online links are so vague.
She was told that she has a touch of COPD so she's in the very early stages, she was going for regular tests for something else and it showed up in her bloods so they sent her for an xray, she'd had a chest infection that wouldnt clear up and this awful deep, hollow sounding cough and thats how it was discovered, she was lucky in that it was found so early on and her coughs not as bad since she stopped smoking.
She does allot of work around the house and outside so although she's not very active, she doesnt sit around all day either so im hoping that will balance out the lack of exercise.
I just wish I knew how long we are looking at before things start getting bad.

looksee

Don't even think about it at this stage, it could be years - more than is worth worrying about at this stage. She has already given up smoking, which is great, if she can get off the vaping as well it would be better. It sounds as though she is quite active which is good.

While you can't compare situations - there are other things that exacerbate COPD, its a bit of a catch-all term for a number of issues - my husband was well into his 70s, had spent the previous twenty-some years retired, mostly just sitting in a chair, doing almost nothing, and smoking. He didn't have a cough and he didn't get infections, chest or otherwise.

Even if your mother does nothing to help herself there is a good chance she will continue as she is for a good number of years. While it is frustrating to see someone neglect their health, you are 'borrowing trouble' to try and anticipate what may or may not happen. Encourage her to look after herself, but get on with your life, there is no immediate panic.

Airyfairy12

looksee wrote: »

Don't even think about it at this stage, it could be years - more than is worth worrying about at this stage. She has already given up smoking, which is great, if she can get off the vaping as well it would be better. It sounds as though she is quite active which is good.

While you can't compare situations - there are other things that exacerbate COPD, its a bit of a catch-all term for a number of issues - my husband was well into his 70s, had spent the previous twenty-some years retired, mostly just sitting in a chair, doing almost nothing, and smoking. He didn't have a cough and he didn't get infections, chest or otherwise.

Even if your mother does nothing to help herself there is a good chance she will continue as she is for a good number of years. While it is frustrating to see someone neglect their health, you are 'borrowing trouble' to try and anticipate what may or may not happen. Encourage her to look after herself, but get on with your life, there is no immediate panic.

Thank so much Looksee, ill just focus on encouraging her and hopefully she can get off the vape soon.
Thanks again for replying, that was really helpful and informative. x