I know exactly what you mean. I've cared for my wife for 14 years now, trying to cope with the increasing demands of a degenerative illness. I have one afternoon off, through arranging carers to sit with my wife, and occasional respite breaks. All too often I spend that just killing time, on my own....
My wife has Secondary Progressive MS and is significantly disabled now; she can no longer walk, nor use her arms or hands very well and is mostly confined to bed - sometimes in her powerchair. I am her full time carer and she is nearly fully dependent on me (although she can occasionally feed hersel...