I went to a support group – it was for Alzheimer’s but since LBD (Lewy Body Dementia) is a form of dementia, I thought it would be of help to meet with people with the same problems.
It was interesting; the group was mostly women. While they were talking about adult day care and putting alarms up, I realized we are way beyond that stage. We went through those stages 10 months ago. My husband, running away, wanting to go home (I use to take
him from the house drive around and then come home so he believed we had left a place and came home). The jealousy and thinking everyone was stealing from him. That was really tough – now it is even harder in a different way.
Now it is more emotionally trying, while I use to be able to get him in the car with some help no longer is that possible. The last time he was out June or July, we went over to my brother’s house. We used the wheelchair, I am sure I blogged about it. That was over two months ago now he lives in his hospital bed or recliner.
My husband doesn’t seem to really mind but if he stays in his chair more than 4 or 5 hours, he is completely exhausted. At this point, he is living in his own world – sometime he gets upset but most of the time he seems content.
Last week when the nurse came she said “ I know this is hard but the hardest part is yet to come”. Boy is she right – Dolly told me that I need to start thinking about my future and putting things into place or at least thinking about what I will do.
That is so hard – I really feel like when it happens I am going to die.
