I cannot believe it has been almost a year since since I wrote about my husband's illness!!! The last time I wrote, he was able to climb stairs, walk up the road with my son and our dog Lucy and feed himself. A lot has changed........he is now very frightened of stairs and we do not take him upstairs unless we are having a family gathering but even this is a mission, as large gatherings are just too much for him now. His mobility has worsened and the walking has come to a minimum, although we do try to take him a couple times a week up the road, but that is all he can manage. We now take his meals to him and I cut the food up into small pieces and feed him. He still enjoys his food and I try to cook all the things that he loves. Once a week I take him out for pizza, but we go very early so that the restaurant is still quiet. No more grocery shopping with him, as the stimulation is far too much. We have also started to bath him in a lower bath, as the bath in my bathroom is now too high for him to lift his legs over. We now also use a jug for him to urinate into as it was very difficult for him to aim with his spatial issues.........one has to see some humour at times!! My special needs son plays a huge part in his care and it has also given him a purpose, although, us carers tend to take a thrashing from time to time. He still sits in the sunroom and listens to music and the tv, although I don't think he actually focuses on the tv, it is more background noise. He has become obsessed with his clothes and thinks that people have taken them. I try to take him to his cupboard and let him touch his clothes and this seems to help for a short while until it starts all over again.
It is hard to take him away for a night or weekend as it has proved to be very disrupting for him and we are in the process of getting extra help for him, in order to be able to take a break and get away for a night or weekend if need be.
But despite this all, he seems content for most of the time, although can have angry outbursts, but I think I would too if I was restricted in this way.
