Part II about care givers:
It might have been a drastic change or a slow one, but things will be completely different than before. Maybe you can not do things spontaneously anymore like you used to, and that takes away a freedom that most people take for granted. For us it was quite sudden, I was already chronically ill, but I was much more able than I am now. We used to be able to suddenly decide we wanted to go out, and now I need to weigh up if it will be possible or even if it is worth the aftermath. So my partner goes out alone a lot. It’s good for him and good for me.
Carers can be wary of sharing their problems with the person in their care; this is because they think they do not want to burden them. But sharing problems can actually give the person you care for the ability to give you moral support. We should always let our care givers know how much we appreciate them.
If your carer is your partner and you had times together when you were not ill, try to find a way to preserve some of the relationship you had before you became ill/disabled. You might not be able to do the same things as before, like going for dinner, going to movies etc., but you can still watch movies together at home and discuss them. Or maybe you can play board games (they can be done online as well), read books together, discuss art or just talk about the things you really liked in the past.
There is a reluctance to tell people when someone has become a carer; it is a life changing and stressful event. The consequence is that other people would not even know when a carer needs help and that can lead to burn out or depression. If you are the one being cared for, encourage your care giver to share his or her thoughts with others.
Things might not always be the same; sometimes people recover a bit or maybe they completely recover. This depends on the illness/disability of course, but if there is a chance for improvement, remind your carer of this. I have improved a bit in the last year; we have been able to take 2 mini holidays and those have been great!