I apologise firstly for having a moan but I am really struggling at the moment coping with my husbands MND. He was diagnosed in Sept 16 and until May last year was working. In the last 6 months he has deteriorated but is still able to walk although unsteady to the bathroom. He uses a NIPPY at night and requires me to use a cough assist with suctioning as well. His arms just hang and he requires help with all care, he doesnít eat but requires PEG feed and extra fluids.
I thought I was managing quite well but I have recently had to return to work and I am trying to balance everything. I feel so guilty as I do get tired and I do snap at him sometimes especially when he just laughs but I know this is part of the disease. How do other careers manage? We did have additional support but hubby didnít like this and cancelled it. If I sit down for a cup of tea he suddenly wants something and he just laughs. I feel awful for thinking I just want to run away for it all but I know I canít and I wouldnít. I love him dearly but coping is very waring. Sorry for moaning I know I am not the only one and I am grateful he is still with us, just struggling at the moment.