I don't know how much longer l can cope!

Ask your palliative team to supply you with an air mattress like the have in hospitals. My hubby was offered one as he was literally skin & bone but he ended up in hospital  then the hospice so we didnt need it in the end.

Like Detty advises, try an air mattress if you haven't already. The district nurse organised one for my Mum - it came via Mediquip - and it's made a huge difference to her comfort levels/sleep patterns as she too has lost a lot of weight.  

I think ranting and offloading is very much allowed on here ... I've done my fair share and I only joined a couple of weeks back!

Try to take good care of yourself too. 

Thank you l will try again to get another referral for district nurse to re assess hubby's health issues. 

Hi Jillie

Its so hard when you become carer, and its so exhausting as well. My husband also had this rollercaster up and down until nothing could be done and he died in October. 

Do go back to district nurses, or palliative care team about the pain, he should not be in constant pain. Make some noise about it, sometimes I had to phone and nag. Have you had a carers assessment, this may help you, although in my case, it took so long, it didnt help us. 

Do you have a hospice nearby?  They can be invaluable for support, getting things done and supporting you too.

Also any family, friends or neighbours who can help with routine things like shopping?

There are many here who understand so rant away, it helps to know you are not alone. 

Big hugs x

Can I just echo what Malengwa has said? I'm finding the support from my local hospice far outweighs what we're receiving from the GP or district nurse. They seem to take the time to understand and have been able to 'signpost' me to other sources of help. 

And I would say - if you haven't already - ask for a care assessment as soon as possible. I'm currently in a minefield with that and have just been told it could take 28 days for even an initial response. 

Take care - you're certainly not alone.

And Malengwa - your help and advice on this forum is really appreciated.

Once you have a diagnosis you are supposed to be on the Gold Standard Framework ( GSF) where GP , palliative  teams etc are supposed to liaise with each other but I found this wasn't the case. GP never seemed to read notes that were sent over for prescribed drugs & I literally had to jump through hoops to get them. It was so bad I was in tears on the phone to our palliative nurse so she used to send prescriptions direct to the pharmacy rather than asking GP to prescribe them. Since my husband died I have changed to different surgery as I had no faith in them.