Well, the inevitable happened! I crashed last week.
Was doing so well, trying to get things in place to get help. It was all coming together, but obviously not quick enough. I broke down and couldn't get out of it, so in end admitted defeat and called my daughter!
Thankfully my angel is very resourceful young woman, ex trained nurse, in management for a caring Charty, so could easily take control. I was packed off to my sister's for two nights. She looked after S, with the help of S's son and wife.
I know we all preach, take care of yourself, but NOT one of us actually does. We all think of our loved one first, their needs, their feelings and ignore our own. This is not right, it is not helpful. I knew I was tired, I knew I was struggling to cope. Lots of you told me to get a rest, but I didn't feel I could leave S. It wasn't fair, how could I run away, while he had to stay and put up with his illness.
WRONG, WRONG! WRONG!
It is their illness, not ours! We are the ones doing the looking after, so of course, it's US, that NEEDS the rest! I was only away for two nights. But it was enough to make me want to come home. Yes, I still feel tired, yes, I still feel overwhelmed by the whole situation and yes, I do feel very guilty for crashing. But it has made me realise that, these breaks are essential for S's well being. He was in a terrible state the evening of the crash. He couldn't do anything, say anything or even just hold me. It was very wrong of me to put him in this position. One thing I have come to realise, the thing PSP loves more than anything, is stress! The symptoms become 10 times worse, thus making everything more unbearable!
Somehow, I am going to have to accept that I have to go away every so often. People are going to have help me do this. I CANT look after S by myself, nobody can, not for the years we have to do this job. Thinking about it, S was diagnosed in 2013 had a stroke 2 years before that. I now know I was caring for him at least 2/3 years even before his stroke. That makes at least 6/7 years that I am now aware of, before that? Who knows! You will have similar stories. Your caring role, especially for whose spouses have PSP, will be a lot longer than you realise!
I implore you all, take a good look at yourself in the mirror, be honest, " do I need a break?" I bet most of the answers will be YES, then find a way to get one. Even if it's just for a night. To be out in the grown up world, for a few short hours is fabulous.
Please don't let yourselves get into my situation, where there is no choice but to take a time out. It causes far too many problems. Organise a break, get prepared, have something to look forward to, these things alone are good for you! Your loved one will survive. I think S has had a good time, everyone tripping over themselves to make him feel wanted, loved and cared for. Not some neurotic, screaming, crying wreck! Some choice!!!
I know from the posts, some of you are getting quite close to the place I found myself in. You know who you are. Please do something NOW! The world doesn't stop, just because you admit to having to get off the merry-go-round for a few nights!!!
Sending everyone lots of love and thanks for helping me through the last few weeks, I did try and take the advice you all gave me, but obviously not quick or soon enough. Lesson learnt!!!!!!!! (The hard way, as per normal!)
Lots of love