COPD stage 3/4 experiences

[FloridaCheese]

My Dads cops is progressing and he's now at the stage where he is very thin, not able to eat the volumes he used to. Activity is limited to being in the house and pottering about to the WC or kitchen for a drink. He isn't on oxygen. Needs antibiotics quite often for chest infections. Always seems to be picking in up each couple of months. To be honest his life is quite miserable and he doesn't seem to get much enjoyment from it anymore. He doesn't want to go out because he gets out of breath. He doesn't get many visitors.

what are your experiences with this disease. I. Thought he would be ok and then one day need oxygen and then shortly after he would likely pass away. But wondering now if he is just destined for this miserable half way life where he doesn't feel up to much and is hiding away. It's so sad and miserable for him. I'm wondering how much longer this will be for. And do all the people with this disease end up on oxygen. And if so how long does that have last for.

i guess I just want to understand more about what to expect. The medical team just say take it as it comes and enjoy life as much as you can but dad doesn't seem to be able to. This is such a cruel and miserable disease

Unfortunately my experience of friends with this is much as you describe. Muddling along not getting much out of life and it being more drawn out than expected. For the two people I know this has continued for years, then ages on oxygen and even worse but still hanging in there, and then the end was quite fast for both of them (caught a virus and couldn't fight it off). It's a horrible illness and my only advice would be to try and adapt his expectations. For instance, driving to get fish and chips and then driving to a beauty spot to eat what he can. Rather than walking places.

My mother had COPD and her life was similar to your dad's towards the end. She was never on oxygen but she wasn't good at going to the doctor's either. She avoided it as much as she could.
She eventually died from pneumonia which was picked up too late but by then she was tired all the time and even found walking to the bathroom exhausting. By the time she actually agreed to have some help it was too late .
Having said that she lived a relatively normal life with it for around 15 years after her diagnosis before it became too much for her.

Has he had a proper review of his condition with a respiratory consultant or respiratory nurse ? If not that is your starting point .

@FloridaCheese I'm in the exact same place with DM at the moment, just brought her home from yet another week in hospital with chest infection although this time it was looking like home oxygen would be needed.

Unfortunately as she refuses to stop smoking I'm not sure whether home oxygen will be an option when that time comes so just resigned to what will be will be atm and getting a second job to cover hospital parking 🙈

As far as I know, home oxygen is not avaliable to smokers
The risks would be too high

and when i pointed this out and suggested that if she wanted to maintain her independence she should think about quitting she none too politely suggested i stfu and foh 🙃

She is normally a lovely, kind, polite person

My DM is at this stage too. Lifelong smoker who has "apparently" stopped. It's an endless round of chest infections. She always has a rescue pack in the house but invariably leaves it too late to start them. She is painfully thin with a tiny appetite. We have been told that oxygen simply isn't an option for this condition as the lungs are too scarred to actually respond to it.
It's agony to watch, she walks really slowly now but does still insist on driving so a conversation will have to happen soon as we think she shouldn't be. She's too weak now. I expect she will slide into depression if that last bit of independence is removed. As others have said it feels like it could go on for some time yet.

My Mum was like this for about ten years. (From about 60ish). She had been a heavy smoker her whole life and gave up at 55 and then was diagnosed with copd shortly afterwards… (!) it finally caught up with her I guess. She was always expecting to go on to oxygen but that never happened. In the end it wasn’t the copd that killed her at all - she was diagnosed with bowel cancer at a very late stage and died of that age 71. Copd is a very strange condition and doesn’t always progress the way people think it will.

My husband has a lung disease. It’s not COPD, but the effects are similar (although his life expectancy is theoretically shorter).

As a previous poster asked, does your dad have a respiratory consultant and nurse? Is he assigned to a centre of excellence? Has he taken a pulmonary rehab course? If the answer to any or all of those is no, that is your dad’s next step(s).

Does he get dietary supplements? Simply fighting disease uses a phenomenal amount of calories, and it’s hard to eat, so the NHS will provide really high calorie soups and milkshakes, for example. He should ask for a referral to a dietician. My husband has managed to stop his precipitous weight loss, which was leaving him weak and prone to infection. In the meantime, as there may be a wait for a dietician appointment, I can recommend double cream poured over ice cream as a regular meal. Full fat milk; cream in his coffee; easy to swallow high calorie food like rice pudding, will all add calories without too much effort.

I know how hard it is for someone constantly breathless and coughing to exercise, but it’s vital. A fair bit of the weakness and weight loss will be from muscle wastage, and even small changes make a massive improvement. Again, a respiratory centre of excellence will have a physio who specialises in lung conditions and exercise, but any physio will be able to offer some advice.

Also, it’s easy to assume that any increased breathlessness, coughing, weight loss etc is a progression of the lung condition, but every change should be investigated, as it might actually be anything from heart changes to pneumonia, a chest infection to acid reflux, and that’s all treatable.

Thank you everyone. We are not alone. It really is awful for the person living it isn't it

he did a pulmonary rehab course a couple of years ago. If by this you mean he had physio sessions and given things to do at home. He can't do this activity now though

also yes he is under a respiratory team and has 6m reviews.

he was offered high calorie shakes but didn't like them 🥴

A pulmonary rehab class should include some gentle exercises but also breathing control and techniques. If he can’t do any of those, he should ask his consultant for further breathing and exercise support. Any movement honestly makes a massive difference, even when it’s hard. I have cried because I felt so mean pushing my husband to walk faster, walk further, get up those steps, come swimming, take the grandkids to the swings… but he is still relatively fit, even with a blood oxygen transfer that can drop to 40% at times.

Nobody likes the milkshakes, or the soups, because they are foul. There are two ways, I think, of dealing with it: treat them like medicine, hold your nose and swallow, or - better - disguise them in something; my husband adds his to a pint of milk, banana, peanut butter and occasional dollop of ice-cream smoothie. He just chucks it in a jug and blends it with a little hand blender, then drinks a glass every so often through the day.

And yes, it’s bloody horrid. I think all you can do is offer advice (and nag occasionally) but recognise that sometimes whatever best practice is is just too much trouble for someone to want to deal with, and that’s their right, frustrating as it is.

My aunt kept needing to go to hospital as oxygen levels dropped too low. She would improve, go home and then drop again. Plus the constant infections.She became weaker physically and developed confusion which was considered a mix of lack oxygen to brain/ hospital confusion and possibly dementia (she was mid seventies) she died last year from pneumonia. This had been going on around 2 years and the last two months she had been moved to a nursing home as she could no longer manage at home.

My Dad had COPD. He just got weaker and weaker. Stopped eating very much because it was too much work. He was painfully thin. He had oxygen there but hardly used it. Used a nebuliser all day though. Became immobile because his leg muscle wasted away. It was awful to watch and it was a relief when he let go. He never stopped smoking either. The COPD nurse stopped taking his stats because it was pointless. He had palliative care for 3 months and carers for the last couple of weeks

My dad died of COPD at 81. He’d lived with it for 12 years and it was only the last year when he was on oxygen etc. He gave up smoking the day he was diagnosed and threw himself into exercise, even just walking up and down the house at a pace. He was given inhalers before oxygen, they helped. Weirdly he never really stopped eating, giving up smoking made him put weight on and eat endless chocolate biscuits etc. He ended up in hospital with an infection for 10 days and was let out on oxygen, he still went shopping once a week. He got an infection in the middle of Covid and refused to go to the dr or hospital as he was convinced he’d get it. Sadly that was what killed him. It was very quick and they made him comfortable in hospital, we were thankfully allowed to be with him. It’s an awful disease and reading some of these I realise he was lucky as he was doing really quite well even after the first infection that left him with oxygen. No advice just sending you love and hugs, it’s awful to watch ❤️

Asthma and Lung UK have some online support groups (they also have a helpline) if any are an option :

https://www.asthmaandlung.org.uk/groups-support

My mum was a heavy smoker all her life. She continued to smoke until she died. She used to walk around the house with her fags in one hand and her inhaler in the other. She had to use a nebulizer every day.

it wasn't called COPD back then. It was called emphysema. It is a horrinble, horrible way to die. She died at 72.

Thank you for this, so helpful.