Bette - After surgery, my son used a laptop and wrote in BIG letters and turned the laptop around so people could see what he was saying from across the room. Or they would stand next to him, facing the laptop screen. It could work with an iPad, too or something similar to iPad. Paul did get so frustrated with me especially after he came home from the hospital, because I couldn't understand him sometimes. . .I tried reading his lips and finally I told him I was a little deaf and he needed to be patient with me (I really wasn't that deaf) and he was better after that. To communicate, I would try to ask him just yes or no questions so he could reply with thumbs up or down gestures or shrug his shoulders. Or I would give him choices of #1, 2, 3 and he could hold up that many fingers. When his 5-year-old daughter was with us, she got so used to it, she started using our special "sign language", too! Maybe someone could lend you a laptop or an iPad for Reggie? It might be easier to type than to write out stuff. I know it can be so very frustrating. I remember as a child I got laryngitis for about a week and I still remember how depressed and frustrated I was not being able to talk which is nothing compared to what a cancer survivor has to go through! Sure hope things get a little better in the communication area. I don't know about the other issues you mentioned, but I'm sure someone else will be along that can suggest something. From what I've seen of all your caregiving efforts, your "flying blind" is pretty awesome!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)