One year in from diagnosis of severe COPD and my husband is still stubbornly refusing to consider Pulmonary Rehab. Having suffered with anxiety and depression for over forty years he regards any form of group involvement as counseling, which did nothing for him in the 1970s.
With no transport of our own I'm sure some of the problem is lack of confidence to make the twelve mile and two bus journey there and back, plus navigating the hospital; it would have to be a joint venture.
Obviously I've researched to explain what PR actually involves, but to no avail. Should anyone else've been in a similar situation, any advice?
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Hi Hun, First, Your PR can arrange a Taxi to collect your Hubby and take him home, My Next Companion at my Class is having this free of Charge. Rehab is so so Beneficial to us all with COPD , I am on my 6th Course. I Value the Group I am with as I have all the previous ones. We are all in the same Boat. If he continues to refuse, then maybe You can get the Exercises done at Home look at the BLF Website on Here. I Know I Truly Benefit from P Rehab. Good Luck . XXX
I have been in this situation and still am. He has severe asthma and bronchiectasis along with other health problems. He has been offered pulmonary rehabilitation on a number of occasions in the past. At the time he wasn’t as poorly as he is now and perhaps could have coped with it. He tried it once or twice and packed it in. Other times he refused when it was offered. However, he used to get exercise by cleaning the cars and doing other household jobs.
Currently he is quite poorly but has a place at day hospice. He’s been there previously and packed it in. I am expecting him to give up again. Other activities have been offered and he declines. I can’t make out if he lacks confidence or can’t be bothered. I strongly suspect the latter although he says it’s because he is not well enough to go.
Like you, I have been frustrated, one reason being that I would like to have a break from caring just for a few hours. Now I have given up bothering. I have no right to tell him what to do and it’s no use getting uptight about it. It’s his life and if he wants to sit in the home 24/7 then so be it.
BTW - re the joint venture, I look after him and take him to medical appointments but I don’t want to be involved in social activities. Have you asked for transport so he can go alone?
Thank you Bella, I'm quite happy to accompany him as my understanding more would be beneficial to us both. I'm coming to know what you mean about not bothering but will persist with PR as it has to be beneficial. A friend's partner is about to start and I really hope might convince him to give it a chance.
I'm ok at present with a little time for myself but can see the time coming when that won't be the case; I do hope you're getting the breaks you need and wish you well.
From the description of your husband’s problems it doesn’t sound promising but nothing ventured etc. My OH is a home bird and has never joined anything. This is probably why he has rejected various group activities at the respiratory unit. I tried time and again to encourage him, offering to take and pick him up but with zero success.
He has never minded exercise as long as it has a useful outcome eg cleaning the cars and windows, weeding etc. He still manages to use the Gtech cleaner and to clean the shower on good days. Could your husband get some exercise around the home?
All I can say is do your best but don’t worry if he refuses to go or doesn’t like it if he tries it. Would like to read your follow up if you do get him to rehab.
Yes, my OH does a fair bit around the house Bella, but is commenting on his muscles seeming weaker which I believe can result from being sedentary. Having always been an outdoors man he's finally mastered the digital tv and more particularly freeview, so watches more tv now. I shall persevere with PR, so watch this space...
I have not suffered with anxiety and depression, it is different for me. I am on the point of being very severe (stage 4). Pulmonary Rehab is really essential in no way is it therapy just education and exercise that is tailored specifically for the condition. The reason it is done in groups is purely to save on resources but has the added advantage of having a social side because of it. There is no regimentation attached to the exercises, just encouragement and fun. The education side is all about teaching how to manage the condition, how to take the inhalers properly, how to expel mucus from the lungs, when to start the rescue pack. Most of all being taught how to breathe and how to control it, which in turn will build confidence and enable a reasonable quality of life. You will also be allowed to accompany him, for support, although you will not be able to take part in the exercises
Learning self management of the condition is really essential, there is not really much that a GP can do other than monitor the progress of the disease and issue prescriptions, most of which will be on repeat prescriptions anyway. In case of an infection, the signs need to be recognised a.s.a.p. and the rescue pack started, not have to wait for an appointment to see a GP.
Exercise will enable him to do a so much more than remaining being sedentary. I travel everywhere on my own, using public transport, still work full-time on my feet all day. Live in a maisonette up three flights of stairs and even carry my partners loaded shopping trolley up them. In a few weeks I will be skippering a ten ton sailing cruiser, taking my family for a weeks holiday on the Norfolk Broads. I will be 69 years soon and I am also recovering from Lung Cancer too. I do have to put in an extra effort to manage all this but after three years of it, since my own diagnosis, I am now used to it and it comes naturally.
It will be the greatest mistake of his life not to go to Pulmonary Rehab. There is absolutely nothing to be anxious or afraid of and nobody will judge him at all. He will be perfectly safe as the physiotherapists/nurses are fully trained to look after him. You indicate that it will be at a hospital, where else safer could it be held.
Thank you 2greys, your post has reinforced my determination to persevere; I really hope a friend about to begin PR might persuade my husband to give it a try. As for 'fun' I fear that was an early casualty of anxiety/depression.... It sounds as though you've given b****y cancer a good kickin', and good on you; have a wonderful holiday on The Broads.
I shall copy off your post for reference as you spell out so clearly the benefit of PR. Thanks again.
I really hope you can persuade him, staying active and exercise will really help lift his mood once again. I think that it is all a vicious circle and it spirals out of control, the lower his mood the less he will do which makes him do even less which then brings him down lower. then does even less, on and on. Then loses all self-esteem to wallow in depression as he then feels useless.
Thank you hypercat, I would certainly have to accompany him as the hospital's a bit of a rabbit warren. I assumed I'd have to kick my heels during sessions but being able to join him in part would be very helpful. I've only recently come to see myself as a caregiver...
I'm not an official carer tho, I just do the stuff a wife would normally do plus whatever more is necessary...? Getting a bit more wearing as time goes by, but 'in sickness and in health' and all that...
PR is great if you can get it. I know it is not available in every County. Certainly not in East Sussex. I got onto the BLF and they sent me a really valuable pack of exercise notes, tips and guidance. Don't wear yourself out. If he doesn't want to do it? PS He is lucky to have you
Hi, There is software called 'MyCopd' which allows people to follow pulmonary rehab exercises from the PC screen.
It's easy to set up on the PC. It might be free if you ask your local COPD team or GP. Otherwise, I think it's £20. I found it very beneficial and you can do it in your own time.
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