Hi Julie
as yet another nurse i have to say i agree with all the above.When Rob went into the hospice,i just found myself doing everything for him.The staff would bring in his meds and leave them with me i changed his dressings,called the staff when he needed medication,explained everything the Doctors told us,dealt with relatives and visitors,and as one doctor said to me i went into nursing mode.

This brought about two problems.Firstly the staff were not aware of some of Robs problems mostly to do with mouth care and skin breakdown and his mental state,and secondly if i advised him to do something he often refused.
I got into the habit of doing a daily report which i passed on to the nurses and if i had a problem getting him to "behave" i would speak to his key worker nurse Jane.She would then do his dressing and talk to him at the same time.Jane was privy to so many private moments with Rob,i felt she knew almost as much about him as i did.

As his face broke down i also found it impossible to remain detached from my role as his wife when i did his dressing, and found myself increasingly unable to hide my heartbreak every time i saw it.The site of him undressed ready to shower made me bite holes through my lips,and although i gradually relinquished the bulk of his nursing care to the staff,he would never let anyone else wash him.
The hospice allowed me to be a wife and carer and the support given to me when i did go and try to hide my distress was brilliant.
Doing all this at home must be so very hard and i wish you all the very best.

liz