Quite a while ago, I was at my wits end because my husband was slowly dying from COPD and Bronchiectasis. He had been in hospital three times with pneumonia in 8 months and nearly died in hospital. He had completely given up.
Whilst he was in hospital I was chasing up my appeals for the Attendance Allowance, asking why we did not have a Community Matron, and a heck of a lot more things that no-one was helping us with. My husband was so down but very angry and domineering, I had to do everything for him I actually felt like walking out as I had my own illness and had lost 2.1/2 stone without dieting.
I wrote to my MP and within a week we had been granted Attendance Allowance, received our Blue Badge, we had a visit from the Community Matron who has now ut him on her books, the physio was requested to come to the house as my husband could not get to the Rehab classes.
After months of stress, emails and asking why no-one was helping us, and getting help and information from this website and such lovely comments telling me to keep my chin up everything suddenly fell into place. We have got a wheelchair, which we were going to buy and had on order, but the Matron said no, you should not have to by your own equipment and organised one for us. We also got home oxygen and a nebuliser to keep.
Two weeks ago, it was our 45th wedding anniversary, we had not left the house since January 2012 apart from hospital visits and admissions. We got our sons and their family together, booked a table at a restaurant and went out for a meal. We took the wheelchair and oxygen with us, my sons helped with the wheelchair and we had great time, my husband said he had never felt so relaxed for a long time.
It does not end there, at the weekend my husband said he felt like a drive out, we took the wheelchair and he said, shall we go out for our dinner. We went to a lovely little pub, and had a meal. I cannot begin to tell you how wonderful this was, I had got my husband back and we were once again a couple instead of being patient and carer. Having all this help has made my husband realise it is not the end of his life as he was thinking but the beginning of his new life with this condition and he has to learn to live with it.
The matron is going to organise a 'care pack' so he has antibiotics on hand and is given us our 'flu jabs today to save us having to go to the doctors.
It just goes to show what outside help can do for you, and it is terrible that I have had to fight every step of the way to get it. The GP could have helped more instead of my having to go on the websites looking for answers.
Hi sweetthing, what a lovely, uplifting post! Congratulations on your 45th wedding anniversary. Looks like you have both turned a corner and now have a good, bright future to look forward to. As for the GP - I honestly don't think they have a clue what COPD is. It makes you wonder about their training doesn't it? since my diagnosis I have learned more from this site and from the internet than I have done from one of the ten locums I have seen in the past five months!! Without sounding like a 'know it all' - I think I know more about the condition than they do!! X
Well, how brilliant to read how well things have turned out for you both. We have found out the same as you that there is so much help out there but they don't make it easy for you to get. My dad has accepted he needs a wheelchair now and we hired one to take him out on Saturday, and went for a meal too like you. But he has since found out that he can have a wheelchair on prescription like the oxygen. Marvelous. I am so thrilled for you both that life is finally getting better for you. Nothing can compare to actually having these dreadful diseases but you will understand when I say, being a carer and feeling so helpless at times is quite lonely and regardless of how much we do it never feels enough does it?
Enjoy the rest of your anniversaries, they can only get better!!!
So glad things have turned around for you.i lost my hubby over 8yrs ago.with c.o.p.d.and i have it also.but never mind about me.just enjoy as much time as you can together.check to see if theres a carers society near you if so join it as they help the carers also.take care and all the best. to you both and congrats..i was married 41years. get as much help as you can from who ever will give it to you.all the best...
I would like to say THANK YOU, for all these lovely comments. It is so reassuring to know that there are so many lovely people on here that are in a similar position to ours
Just one thing I forgot to mention. My husband was a big Ebayer in the past but when this illness got worse in January he did not have the strength or the inclination to do it.
Now he is talking about starting again, which will give him back his hobby and give me time to sit and read a book or watch a film.
Sooooo glad things are working out for you sweet. I am so happy for you both.
Brilliant - well done you for fighting your corner - something we have to learn to do I'm afraid, but worth it. Glad you are now seeing NHS at it's best and good on your MP too. Very uplifting. Amazing how some support can make such a difference. Worry though about those who don't have anyone to fight their corner.
Thank you so much, I was only saying to my husband last week that he is very, very lucky to have a wife, (I am 70 years of age) and older than him, who is as fit as a fiddle even though I have lost a lot of weight and am waiting for a body CT, who has been able to deal with all the knock backs we have had this year until we finally got what we needed.
There are people out there, living on their own who have no-one to fight their corner, and it is disgusting that the GP's cannot organise someone to help them get what they deserve.
I did not know half of the things we were entitled to until I went on the web and found this site. I read details on other websites and thought, why haven't we got that., the GP should have organised it for us.
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Misdiagnosed with COPD
Frankie (copd stage 4 )
Severe COPD and cataracts.
