I am struck by how this disease affects each person differently. If you met my DH you would at first not think that there was anything affecting him, but as the conversation continues you notice that he puts the wrong word in the sentence and that he will stop and ask if that is the right word. He will become verbally aggressive " never physical so far" if things don't go as he thinks they should. He will become very tired and just go off to bed and sleep for hours even though he has just slept from 21:00 hrs to 08:15 hrs. Sometimes he is very social other times he just wants to be left alone to listen to his music. His eyesight is deteriorating and this makes it hard to see a golf ball, baseball or hockey puck, so I think I will soon have to bring in the CNIB. Likely by next spring. His eye exam is next month so I should know then how the disease is progressing. Tomorrow I will be taking the small amount of clothing he had brought here for when he stays over but that will no longer happen. He is having bad nights before coming and then two or three bad days after he returns to LTC. I have been able to talk him into just going out for coffee or sitting in LTC and visiting. I will have to bring Willy to his room for their visits. He is so frightened about these changes and I really wish that he would not know what is happening. I just hate to see the fear in his eyes. I try to be just matter of fact in our conversation and reassure him that I will be there every step but it is so scary for him. He can see the progression. Tomorrow I am taking him to a group meeting with five other men at his level at the Alzheimer's office. He asked to go to this as he finds that there is no one at LTC that he can talk to that can say" yes I know how you feel". He needs to be with others suffering the same as he us. How about me? Well I am having a very hard time and I just need to let life take it's course and not push it. One day at a time.
Jazzy, I am sending you a cyber hug. My DH recently passed and I know his symptoms manifested differently but I too brought him home on the weekends after he was placed but Thanksgiving was the last time I took him out because of what it did to me and how difficult it was for me. Hospice told me that everything that I went through was really much harder on the caregiver than on him--especially at the end when I thought he was in pain. It really was the fact that I was in pain more than he was. I tried so hard to "meet his needs" but going through all the hoops for him did not change the ultimate outcome which is why focusing on the caregiver's needs are so much more important for survival. It sounds to me like you are doing a fantastic job given the complexity of his situation. My husband too absolutely knew what was happening to him and it does make it more difficult. I was told that his situation was unusual in that most people by the time they get to the latter stages are no longer aware but my husband was aware up until about the last 3 days or so. You may want to step back and ask yourself what can I do about the current situation that would make things easier for me. It may be something very small but it could make a big difference for you. God bless