End c.o.p.d

[mickeysmess]

My husband has end copd , he is bedbound but is niw sleeping most of the time,i am really worried he has been in bed for eighteen months now , is this sleepi g normal ,the nurses etc do not come anymore as they say i am copeing with it ok but sometimes its so scary , and i do t know how to think x

[pergola]

Good, Mickeysmess, that you approached us. I really think that you should ask for a house visit from your GP. I think you need some backup. If he is bedbound, he must need some nursing care. You dont mention his age. Also talk to the BLF nurse, too. I dont have the number to hand. Sorry I cant be more help. XX

[Toci in reply to pergola]

03000 030 555

This is the number for the BLF nurses. They are open office hours, Monday to Friday.

[mickeysmess in reply to pergola]

Thankyou he is 61

[y_not]

mickeysmess , you need & deserve some help! Contact your GP for a home visit, ask for the contact information for the community care service - they can come and help or give you a little time to relax.

One danger has to be bed sores - I get that he's mobile and awake (some of the time) but it is a real risk.

Please get some help via the GP - you need and deserve it!

Best wishes

[mickeysmess in reply to y_not]

Thankyiu i will x

[Hidden]

Excellent advice from Pergola and Toci. You really need some help here, you should not be coping, as you put it, on your own. I don't know how you are managing to be quite honest. I am thinking of you as well as your husband. There is help to be had so you should have it.

xx

[mickeysmess in reply to Hidden]

Thankyou xx

[sassy59]

Hi mickeysmess you do need help so see if you can get your GP out. I do wish you luck and send hugs. Xxxxx

[mickeysmess in reply to sassy59]

Thankyou very much xx

[Hidden]

Hi there are others on here who are at a similar stage but who still manage to have some quality of life. Do you think he has given up? I agree totally with the others - you need more help. Does he get any benefits? x

[mickeysmess in reply to Hidden]

I dont think he has given up just tired of fighting for every breath and the heat hasnt helped xx

[jjnanna in reply to mickeysmess]

There must be a way they can relieve his breathing .... and he is the same age as me ... I do think he is giving up so get somebody in pronto to talk to him and get yourself some rest .... do you have family who can come in and help you xxxxxxxxx

[mickeysmess in reply to jjnanna]

Thankyou very much , today he seems alot better hopefully it was just an infection starting xxx

[mickeysmess]

Thankyou all very much yiur replies were very helpful i will call gp tomorriw xxx

[mickeysmess]

I dont think he has given up just very tired of fighting fir every breath and the heat doesnt help thankyou xxx

[Hidden in reply to mickeysmess]

Yes I understand that. I hope you get results from your doctor. x

[Hidden]

Which nurses don't come? The respiratory nurses do stop coming i've learned i believe if someone is not ambulatory they are no longer involved. My husband has been bedbound for 9 months and they are not interested, the GP is now responsible. However, your GP should make sure you are supported by palliative care nurses, have a review for NHS Continuing Care, and make sure the Community Nurses come out to check for bed sores.

And yes, sleeping most of the time is normal.

Sadly, my husband is only expected to live weeks now, but we are getting support. You need to fight to make sure you do to.

[mickeysmess in reply to Hidden]

Thsnkyou very much ,im so so sorryabout your husband please take care xx

[yesilkedi]

You sound as though you need support yourself mickeymess. There are a couple of organisations for carers, Carers UK and Carers Trust who should be able to help you as to what you and your husband are entitled to. Do you have family or friends to support you? As FairIsle said you really have to fight for what you are entitled to, which can be really hard when all your energy is needed to look after a loved care. You could also try Marie Curie for help and support, but try and look after yourself too.

[Dedalus]

Good advice above mickeysmess - sincerely hope you get the help you need to help you both.

[jjnanna]

That seems a long time to be in bed for with no medical or nursing help .... you must be worn out as well as worried xxxx

[mickeysmess]

I will thankyou x

[Nanaeal]

Hi Mickeymess. I have no advice just wanted to welcome you. Hope you have managed to get some support. Best wishes Nan

[mickeysmess]

Thankyou very much