The last few months, we have experienced more difficulty communicating with Ian, especially when fatigue has set in. This has become increasingly frustrating for all of us. We usually rise to the task and one of us can figure out what he is saying. It may just take a little bit of time. As evenings come, his "s" are difficult for him to get out. Smiles are a little harder for him. We have moved onto blinking eyes for yes. Don't worry he can still stick out his tongue. ..that's still no. He is using his eyes a lot more to look in the direction of what he is trying to tell us and then we start the guessing game. We have yet to not figure out what he wants or needs. We will continue to figure out ways to communicate and understand our little man.
Over the past few weeks, we have noticed a lot more drooling. His hospice nurse and day nurse chatted about it today. We could give Ian medicine to dry up his secretions however that increases the risk of plugs, which are life threatening to him. Increased drooling is also a sign of trouble swallowing (this is something I just learned today). Nurse T did some listening and thickening of his liquids until Ian said they were going down easier. The thickening of his liquids will hopefully make sure they go down correctly and continue to prevent aspiration.
This all has been a little hard for me to take as I was hoping we had seen all the disease progression we would see....I told Brian, stupid me....he changed it to wishful thinking. Whichever way, I look at it, I hope we don't see anymore for a while.
Enjoy your loved ones. Treasure yesterday, dream of tomorrow but live for today.