Wednesday lunch with Joe

I stayed with Joe quite awhile today and also fed him lunch and he ate the most he has eaten in WEEKS! The meal was perfect for him today and he ate it all. I then met from 1-2:15 with a special RN who is a dementia expert and learned a lot more and was able to ask her a lot too. She says he can hit a plateau now after 2 weeks of decline and then start another decline. It happens. They will evaluate him again in 2 days. She can push for extra time there but can only keep him there so long, and he then would have to go back to the home until next decline happened. Her biggest concern was me, and she asked me how I cope with all of this and how I have coped the last five plus years. After I told her, she then knew I was ok. Yes, I have my moments,(which is perfectly normal) but I am ok. I learned the hard way what happens when you don't take care of yourself, so now I do. I told her anytime I get down and sad, etc. I just do not allow myself to stay there, but a very short time. After all we are the only one who has control over our own minds, and we can think as we choose, and do as we choose, it is all up to us. She said "you are here feeding him and seeing him all the time and crusading for him and you take great care of him, and you have to have a life too."

She is the most knowledgeable person on dementia's I have ever heard or talked to. She also said he might have blackouts and not see sometimes, he may have breathing problems, and there may come a time they take him off the meds he is taking as they cannot even work in his body anymore. He has stem cell loss and all that is happening shows that. The cells in the stem of brain just die. But he was fine this noon and quite responsive to me. Last night I asked him if he knew he had moved to another place and he said yes. I told him he was in a new building where he will get better care. He said, "I think we are going to like this place." Just amazed me. The RN said he will have moments now and then of saying a full sentence and awareness and other times he is so far gone no one could reach him, and he says nothing- just as she said-it's a roller coaster, and that is how I have seen him do also.
I did me good to talk to her and know I can call her any time also.

His nurse today said he had some scrambled eggs for breakfast, and had slept the whole day. I did finally get him awake to eat, but it was not easy. Although once awake he was fine, and even drank almost two glasses of apple juice. He can only do it with a straw but I make sure he gets it down. For lunch he had mashed potatoes, the tender tips of soft cooked broccoli, which I hid in mashed potatoes so he would eat it, and finely diced shredded chicken- very tiny pieces in some gravy. All very soft and he said it was good and loved it. I just want him to like what he eats and not be fed that pureed crap. So I always refuse to let them bring him that.
Every day is different. I know they may not keep him there after this week, and that bothers me, but I cannot do anything about it. I control, I change, I do what I can, and have to let the rest go.