Hi, I'm looking for some advice and info. My Dad is 65 and for the last 3 years (at least) he has had Emphysema. He is a very private man and was once very fit and had a physical job so it's been difficult for him to accept. I would say he has advanced stages as he has been hospitalised recently with Pneumonia and gets every cold going. He retired in August and cannot walk more than a few steps without requiring his inhaler. He uses a nebuliser also. Certain days are worse than others, he puts this down to the pollen count, I'm not so sure that's the only reason.
I feel helpless as I live an hour away, work and have a 14 month old. If anyone has practical advice or an approach I could take that will make him feel empowered and needed I would be so appreciative. He has said he thinks he is a burden (of course he isn't) and I think his mental health is being affected by this debilitating disease. I really just want to be encouraging and suggest ways of enjoying his retirement without seeming like a nag. Thank you for reading!
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dadwithcopd
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I am slightly older stage four emphysema, live alone look after myself shopping cooking cleaning at a very very slow pace.
As your father been referred to a pulmonary rehabilitation coures, which a two hour twice weekly course for six weeks one hour exercise one hour education on various points covering the condition.
I find the Respitory team are more hands on than a GP they have more individual knowledge about different aspects,and how we are effected by the condition other than breathlessness .
Although it as a huge impact you can have reasonable controll and lead a fairly comfortable life albeit at a slower pace.
There are various breathing techniques taught at pulmonary rehabilitation which help.
Hi, Thanks so much for your reply. Yes he has attended the rehab course but only made it for 3 weeks. Unfortunately over the last year or so he was seen by locum GPs who did very little in the way of referral and when he finally got to see his GP he was so concerned that he sent him to straight to hospital. I insisted that he went to the rehab course as luckily I knew a respiratory nurse at the hospital where I used to work so she gave me some sound advice. He was arriving at the group meeting so breathless that it made him feel worse so he couldn't undertake any of the exercises. It would also take him days to recover so he saw it as pointless (although he thought the physios were great). I think this led to him feeling self conscious, particularly so because most of the other patients were in their 70s and 80s and were more able than him.
I know that he has suggested to he GP that he goes on long term low dose steroids as they make him feel better but GP is reluctant, I guess because of side effects?
He's had his lung capacity tested, not sure the result but it was concerning enough to get him admitted to hospital where he spent 4 days. He hasn't felt much better since then and that was 6 months ago.
Getting him on this forum would be brilliant, perhaps I need to get hold of my brothers and see if thy will chip in for a laptop. I think it will help his sense of isolation. He also lives in a tiny village with no social opportunities which doesn't really help.
I really appreciate everyone's support thank you, Lucy
It is a horrible illness, but there is a lot you can do.
As you say getting about is the worse thing because you can't breathe but maybe you could make some dinners to freeze so all he has to do is microwave them, do his shopping and a bit of cleaning, thats all the things I worry about. And a towelling dressing gown so you get out the bath and just sit there to dry, sounds silly but makes all the difference.
Stone's suggestion of Pulmonary Rehab is brilliant, not only will your dad get fitter he will meet people in the same position. See if there's a Breathe easy group near you its for the whole family.
You don't say if your dad has a Consultant, mine put me in the hands of the Community Respiratory, so if I feel ill they come out arrange PR and decide if you need oxygen, and keep a check on my diet and general health.
Its the little things that make the most difference, but sometimes just chatting about other things is all you need.
YEs he has seen a consultant who put him through rigorous tests. I'm not sure what the outcome was I'll find out. What great advice about the towelling dressing gown, it's the little things that you don't think of if you've never experienced it. He doesn't open up to me either. I only knew it was so bad when we went to France last year to see my brother and we had to keep stopping in the airport walking to the plane. In the end I got him a wheelchair. He's kept it secret for so long because he's a proud man and like I said had a physical job and was in to martial arts in his younger days. He even taught me how to cartwheel!
Thankfully he has a brilliant wife who happens to be a great cook. She cooks before she leaves for work so he has a hot meal and 2 dogs for company. Thank you for your kindness, Lucy
Get him to get a mobility scooter, I resisted for two years and finally got one this summer, it completely changed things for me I can now go places I couldn't before. Is he on much medication.
Hi I also wonder if your dad is tech savvy? Would he come on here in his own right? Don't let him google COPD - it's unrealistically depressing. At the moment he probably feels everything is downhill from here but that isn't necessarily so. Any kind of exercise - really small amounts will begin to give him a lift and help him feel a bit more in control.
Must be really worrying for you. How are you coping? There's a wonderful writer (Vashti) on here who quoted something she's been told , "Try to see this as the next stage of your life......" I found it a really encouraging 'mind-set'. Don't know if that would help him open up a bit - talk to you about what he finds hard/needs help with.
I was diagnosed with severe COPD 6 months ago - it felt like DOOM at the time. After reading people on here - quite a few are much worse off than me, but they are really inspiring, I started to take (quite a lot of) exercise - I feel better than I did then, even though none of my 'numbers' or 'readings' have improved. My daughter said to me yesterday "You seem better now you know what you've got. You're more up beat somehow". Now I don't put that down to knowing what I've got ( ha ha) but it was interesting that she said that. Aw I'm sorry it's a rough time for you two - maybe he just needs to take it in a bit himself before he can decide what to do. best wishes x piggi
He's not brilliant at techy stuff, but then neither am I and I'm 29!
I think it may be a good idea for me and siblings to club together and get him a tablet or laptop so he can feel more in control about finding support himself. There's no good in people handing out leaflets, it's not going to motivate him to see what's out there. There is a breathe easy group near my house so I'll suggest accessing that together as a family as it happens to coincide with my day off.
To be honest it's not be too hard for me to cope with as I was a young carer for him growing up and was told he was going to die when I was 13, (burst oesophagus and heart attack through drinking) so for me, I think he's done brilliantly to last this long! He's got a very caring wife now so it takes some pressure off me but he's still my Dad and I feel responsible for him to an extent. I'm going take some books over for him next week and think about hobbies he can do sitting down.
Goodness you are such a kind person! You've helped look after him practically all your life and you're STILL prepared to do it. Hats off to you x piggi
Great advice,as usual😀Do try & get your Dad to hop on the site,he might feel not so alone then.
You are a lovely daughter,to be concerned about him,having a 14 months old,I'm sure your kept pretty busy.
I think Kimmys idea about the meals is a good one,when you make your dinners,just add a bit extra for Dad,then freeze it,this way,you know he's eating properly,at least.
There is a very real chance he may need oxygen, either long term (LTOT), or ambulatory for walking, or even both if he is struggling walking. Constant use of the reliever inhaler is not really an ideal solution. Has the doctor checked his oxygen sats? Have you got a pulse oximeter to check them yourself?. These are available for around £20 on Amazon or Ebay. If his O2 saturation is less than 94 whilst sitting, or less than 88 whiklst exercising he may need his GP to refer him for a proper assessment. Hope you get some answers soon.
Thank you for the great advice. He has seen a consultant for various tests and went to the 6 week rehab course but didn't last the duration because he was so breathless when he arrived he couldn't take part in the exercises.
I'll look up the pulse oximeter, tht's a really good idea. I'm not sure why he is not on oxygen yet, only nebuliser and different inhalers, purple one is the most recent. I know the GP is reluctant to put him on steroids, which Dad says is the only thing that makes him feel better. He is so much brighter and full of life when he has taken them. I suppose the side effects must be bad though?
Please believe me: this is NOT the end of the world!! I'm at stage 4 emphysema, on Long-term oxygen therapy (L-TOT), 15 hours a day plus ambulatory when I lift my bum off a chair... so I know how your dad feels. Actually, he probably feels worse than be, because I do have the oxgyen!
The previous respondents have said most of the things I'd say -- pulmonary rehab, trying to walk in the house for a minute or two a day then increasing the time but not the speed (he's looking at endurance, not a four minute mile!) and doing the usual "daily" stuff, however long it takes. Sitting down to do chores also helps.
Steroids are given to clear up exacerbations, usually along with antibiotics and they do work wonders but most of us here (I think), who have emphysema are also given more inhalers than just Ventolin and (probably) Seretide. Your dad really does need to see his GP to find out if he needs anti-depressants: sadly, many people with emphysema also find themselves in a state of depression simply because they "can't do" what they used to do.
Above all, just being there for your dad will work wonders.
thank you catnip. I just called him and he said the community nurse came to see him and has recommended oxygen for use at home now. Good news is that she also recommended that he goes back to the rehab groups to do the exercises. He found it hard to manage the 1 minute exercises last time. Apparently the nurses are fantastic and call in regularly to see how he is.
He had various tests done at hospital in a 'shower cubicle' he found it very hard and the outcome was that his lungs are that of a 90 odd year old. I don't really understand how they can liken lungs to age as my 88 year old grandfather has way better lung capacity than Dad.
Dad said he'd love to join the forum if I show him how to use and we'll go to the breathe easy group in Weymouth together next month so I feel much more positive about what I can do to help. Thank you for all your support, it's been wonderful knowing there's such a great peer support group out there.
Hi Dad with Copd, and welcome, you have already been given lots of good advice. I would just like to add (as a 64yr old, with v severe Copd) I find this forum a godsend, I'm not techy so if I can master it I'm sure your Dad can! Take care xx
And don't let him gobble the steroids like Smarties. Short term fix, but long term they cause a shedload of problems. Wafer thin skin, cataracts, glaucoma, diabetes - you name it, I've got it. the devils Smarties have a lot to answer for.
Thank you, the thin skin yes, always getting knocks and cuts. I'll let him know those side effects. He knows not to take them often but always has them on hand in case he gets particularly bad. He says thy make him feel amazing initially then he picks up a cold and is ten times worse. Sorry to hear you have all the additional illnesses on top of copd.
Me and lots of others on this site who are long term steroid users. Virtually everyone will have some of these other problems, and others I've never heard of. Nothing very special about me.
Hi and welcome please take notice of Stones post. Your dad is still very young and you might think a PR course and exercise is the last thing he needs but the PR course is fantastic your dad will get lots from it from diet, exercise, meds and how to save energy.
Its normal for you dad to feel he is useless we have all felt like that and depression plays a big part in our illness and this is another big reason to do the PR course he will meet people who live near him and the course is run by physiotherapists.
It is a very hard time for you trying to keep up with a 14 month old you must be exhausted, we are always hear if you need help.
Thanks very much onamission. He's starting back on 1st December hooray! The community nurse strongly suggested he goes back and recommended oxygen. I might be able to organise that someone meets him with a wheelchair on arrival t the hospital for the group so he doesn't feel so knackered before he starts the exercises. He has talked about feeling low and couldn't understand why as he never has before. I'll get him connected with the forum so he can see he's not on his own. Thanks
That will be the 2 best things you can do get him on the PR course and get him to come on line we are all a friendly lot if not a little mad but it's where I come when I need a laugh and cheering up.
I go to aqua fit at my local pool something that is recommended by the PR I do find it hard and getting dressed after leaves me breathless the times I have come out without my under where lol good job I where a thick jog suit.
I know it's hard to exercise but it really does help me, just walking I would say first few hundred are hard but it gets easier and really improves my lung function, every day if he can try and do a little walk it will be hard but it will get easier, exercise is so important and I know he won't feel like it, but it will help him xx
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