The importance of autonomy

Having ALS stifles you in a lot of ways.  Most of them obvious to everyone, but somethings are not as obvious.  The one I am thinking of now is having choices.  Choosing what to eat, what to wear, aspects of your care, appointments, visitors..... all of these things are denied you when you live in a facility.  There is the facade of having choices, the facility will give you a menu for the week for you to choose from but it probably won't be what you get.  When we want to visit with our friends we call them and arrange a time and place, we can leave when we want, we can cancel if we don't feel well.... that goes away in the nursing home.  I've seen Mike fake being asleep when he is done with visiting with people..... he's done it with me even. lol
When it was closer to the time for Mike to move in with us, there was a lot to do.  I had to move out of my room, we had to put in a double door to the outside, we had to arrange for supplies and nurses, but the most fun was watching Mike pick out the colors of his room!  I don't even know if he truly cared all that much but I brought in a ton of paint chips and we just started narrowing them down.  We even changed the ceiling color since that is what he could see more of than the walls.  He picked out everything for his new room.  I am not great at painting but even that was fun for me because I could send him videos of my progress.  It was a project we could share to add to our excitement of his arrival. 
We hit a few snags with the supplier for his ventilator supplies and then the hiccup with his family, but when the State caseworker came in his room at the nursing home and asked what day he wanted to move out we were beyond excited!!
Mike had a really nice motorized wheelchair but he never used it.  Before going home with him and that huge wheelchair I wanted to make sure it was of good integrity and good fit.  He was so anxious about being moved into his chair (from the time the dropped him, he refused transfers) that I arranged for 2 physical therapists, 1 nurse, 2 aides and a respiratory therapist to be in the room to do the transfer.  I was even able to get an outside company in to evaluate his wheelchair.  I was so happy that he agreed to give it a try because it meant that he could leave his bedroom and hang out in the livingroom with us or sit on the back deck with me looking at the stars....  but it didn't end up that way.  He did get in his chair that day and the chair was a good fit and in working order... but he refused to ever get into it again.  He wouldn't leave his bed..... ever.  I was disappointed.  I wanted his wheelchair to be an asset to his daily life but it ended up stored in the garage until he died.  His refusal limited a lot of what we could do together.  He also was on 5 liters of oxygen.  His oxygen saturation levels always stayed above 96 so I was hopeful that we could titrate his oxygen requirement down since 5 liters would definitely limit him being away from home.  That rate would empty a portable oxygen tank in under an hour.  We tried, but he would start feeling short of breathe at 3 liters, so we never were able to reduce him from the 5 liters.  The front bedroom he was in had a lot of great natural sunlight but he would never let me open the blinds.  It made it nearly impossible to see his computer screen and squinting was difficult for him.  I tried sunglasses for him, but he hated wearing them.  So he stayed in his room with the blinds drawn for the 2 years he was here. 
Because of his reluctance to be moved, he had developed bedsores while living in the nursing home.  It took me almost an entire year to get his backside looking healthy again.  They are an infection risk to say the least but they also hurt him causing him to ask for more pain meds.  Speaking of meds though, I met with his doctor before leaving the nursing home and between the 3 of us we had a schedule of how to wean him from some of the meds he was taking.  We also were able to switch his blood thinner medication to one that didn't require checking levels all the time. 
The day of the actual move..... when he got settled into his own bed, in his own room, painted in colors that he chose, wearing something besides a hospital gown that he picked out, living with his girlfriend in our own house....... he was beaming.  I have a picture of him from right after he moved in and even with the pain of the transportation and moving him around, you can still see the relief and joy in his face.  It's easily one of my favorite memories.