Alison,I admire you and am proud to know you as well..
Gary does not get out of bed either has not for years..not because he is depressed... but because it hurts him physically too much it puts to much stress on his elbows and back...he no longer can hold himself up without being propped and strapped in the chair.....plus he feels it is much harder work on us to try to continually get him in and out of bed..he had several issues with bedsores as well that he longer has since staying on his airmattress..he does get up for showers however..
Now our livingroom is pretty much my bedroom..he and I sleep in the same bed..as I combined his hospital bed with mine by taking down one of the rails and attaching them together..my bed is adjustable so they are both at the same height as well...the kids take over my bed in the afternoon..to talk to him about there day and watch tv etc...
As far as ALS goes..he just doesn't like thinking about the disease itself too much..but does take a huge part in determining his cares..he watches everything , that everyone does..and if something goes wrong often he himself will tell us what it is..just because he prefers being comfortable in his bed..doesn't mean he does not take an active role in our lives...he just does what he feels is easier for him and us..Lisa