The Blog of hardtimes

Things have gone quite badly this last weekend, Si is losing his battle against the monster in his head!

He was doing so well, but he started to deteriorate thursdayish, He is still talking and answering, but he went back in the wheelchair Friday. Yesterday he had a grand mal seizure whilst in the shower, luckily he has a purpose built wetroom with everything he needs, and was on his shower chair luckily!

 I realised something was wrong and Rob and I supported him ,I had to give him the buccal Medazalam orally to stop the fit, we managed to get him back to his bed, Once he settled and fell asleep, the hospice nurse called around  and arranged for the injection driver to be put in again. The nurses called around last night and reinstalled it on his tummy.

She has said he may be with us only be a couple of weeks longer, We have let the family know and  now I am letting you our friends know.

I  am dealing with this quite rationally at the moment, There is a lot to do as he has become more dependant on me, Still damned stubborn! and insists he can do things for himself!

I text the witch  and her  mother, still no  answer, and to be honest it is far too late now It would be too unbearable to see the kids now, I feel so much disgust towards the witch I don't think I could be here if she decided to come after all.

Si won't get his wish from the charity either he really  isn't well enough, I am trying to stay positive and to be honest I hope the Hospice nurse and me and everyone else is wrong about the diagnosis,[ in my heart I know the  truth], I just hope when his time comes he will go peacefully.

I'm still in a bit of  a quandry as to if and when I let him  go to the hospice, In one way I feel it would be right if he is no longer aware but on the other hand I don't want to let him go, either way is wrong he shouldn't  be going anywhere!!

I'm sorry this is such a sad blog,  but it is my way of dealing with all the hurt and anger I am feeling at the moment, I have a cry and then I get a headache, I'm sleeping downstairs to be near to him if he needs me, I don't sleep well at the moment anyway[hot flushes], so I am keeping a good eye on him.

We have had a few good times with laughter recently all the  family have at some stage been to see him, his nieces and nephew saw him this weekend, [they  cope really well, even when the adults arn't] His friends have  been to visit and those that can't have kept in touch. My friends have been to visit him and me most have  known him all his life so they are being supportive. The care workers are doing everything they can to give me and the family support, The grandparents are trying to come to terms with outliving thier grandson, it's so hard for them, but I can't have them here yet, it would be too hard to cope with the extra work, I love and need them but I can't deal with them at the moment.

My ex-husband  [Si's sperm donar, or biological]has been told!

do you know he is just like the witch, he asked to come down to visit, I told him to come when he could [a few weeks ago] even though Si really do'sn't want to see him, I said he should come on his own or with his mum and dad  or brother[they have been once and they  are quite old]not to bring his daughter and ex-partner, { Si is not an exhibition show!!!!!!!!!!!]and still he hasn't had the balls to come, he hasn't offered any form of support financial or otherwise, that's not unusual either, he says he is out of work at the moment but as soon as he can he will help!? Yeah Right! just like the maintenance payments!

Rob has been "there" since Si was 3 1/2, and Tim was 5. He IS thier DAD. He is finding it hard  to cope with all the pressure of working and trying to support me and the kids, I know  I bang on about him drinking too much[ he does] But he is here and he does help with Si in practical ways!!!!!!!!!!!!even when he has had a drink, so relly I shouldn't grumble,  but I do and I will.

So that's it for now I'm signing off for the rest of the day, I have got my daughter coming around and she,  bless her is breaking her heart already her partner is supportive and is understanding now so that helps, and having litlle Bub here will help me.