My aunt was mentally handicapped. Our family too had to face many of the things I mentioned. Being open, honest, and keeping the lines of communication open, so if something changes, everyone is on board, makes a huge, positive, difference. Originally, everyone thought it should fall on my parents to be the back-ups, and later the solution if anything happened to my grandmother. It would NOT have worked out at all. Over time, plans changed to work out better for everyone concerned.
Opening the lines of communication, can be somewhat difficult too. In my grandmother's case, we had a couple family members that invited my grandmother to their homes, as usual, but didn't want her to bring my aunt. They felt uncomfortable around her. Several family members would invite her to family functions, but totally ignore my aunt. For example, "Virginia, would you like more iced tea?" If my aunt mentioned that she too would like a little more, they pretended not to hear. If she asked where the restroom was, they would again pretend not to hear. Strangers are not always kind either. Others had no idea how to treat her. "Do you need me to cut your meat for you?" "Oh, you can cut your own meat?" "I'm surprised you're allowed to have a knife." "You're going to the bathroom?" "Are you able to go by yourself?"
The latter is much more preferable to the former. At least they didn't know her limitations, were willing to help, and caught on to the things she could and couldn't do. Still, things like those people that expressed discomfort about her being around, over time took their toll, and were part of the reason that helped make it more difficult for my grandmother to discuss things more openly at first.
I am in no way trying to be insensitive. Just the opposite. I may not be saying some of it right, but my heart-felt intentions are good.
Opening the lines of communication, can be somewhat difficult too. In my grandmother's case, we had a couple family members that invited my grandmother to their homes, as usual, but didn't want her to bring my aunt. They felt uncomfortable around her. Several family members would invite her to family functions, but totally ignore my aunt. For example, "Virginia, would you like more iced tea?" If my aunt mentioned that she too would like a little more, they pretended not to hear. If she asked where the restroom was, they would again pretend not to hear. Strangers are not always kind either. Others had no idea how to treat her. "Do you need me to cut your meat for you?" "Oh, you can cut your own meat?" "I'm surprised you're allowed to have a knife." "You're going to the bathroom?" "Are you able to go by yourself?"
The latter is much more preferable to the former. At least they didn't know her limitations, were willing to help, and caught on to the things she could and couldn't do. Still, things like those people that expressed discomfort about her being around, over time took their toll, and were part of the reason that helped make it more difficult for my grandmother to discuss things more openly at first.
I am in no way trying to be insensitive. Just the opposite. I may not be saying some of it right, but my heart-felt intentions are good.
save one for yourself 
