A sad night.

It's 5.50 am and have been up since 4.30. Dad has just gone back to bed but I can't sleep, thank goodness for computers. The last few days I have felt better, the dr told me I would have good days and bad days and what a difference it makes to how I am able to manage Dad. When I was feeling awful, so lethargic, my thoughts were 'I can't do this anymore'. Now that I feel ok, I feel like 'yep I can do this'. I wish I felt like it all the time, like I used to...single Mum of 2 young girls who worked full time and did a law degree full time...sphew and I managed it all really well...c'est la vie. And I really wish that I had stayed well till after Dad's Lewy journey.

Last night Dad was screaming out for help and I mean SCREAMING...'I need to pull my eyes out'...'take the paper away'...usually I go straight up to his room but this time I went to the loo first because the other morning helped Dad to the loo and he was on there for ages...'you finished yet'...'no'...eventually...I was busting but just made it. So I went to the loo and go up to his room find him kneeling on the bed, naked waist down...mooning me. Bed clothes on the floor, wee on the carpet, wee in the bed, goobies on the sheets and Dad kinda stuck in the kneeling position. I'm so pleased we are no longer in the depths of winter. THIS IS MY DAD...my heart breaks.


Over the past couple of weeks I was getting used to going up to his room and finding that he had slipped off his pj's and nappy and wee'd a few times in the bed but this kinda threw me.
I could tell he was sort of scared and not aware of what was happening around him. I didn't want to frighten him so I asked him,
'Dad what do you want to do?' ...no answer. He wasn't there. MY DAD WASN'T THERE. I waited a few seconds.
'Dad what do you want to do?'...no answer. I rubbed his back. 'Dad what do you want to do?'
'Leave here'.
'ok we can do that'. I wasn't sure how I was going to get him moving. Rubbed his hands. His body was kinda of stuck in the kneeling position. Got him edging his way back towards the edge of the bed but he couldn't manoeuvre his way off the edge. I had to roll him on to his side and then I couldn't get him sitting up. Wasn't his weight it was his body not doing what he wanted. Eventually he grabbed hold of the bed head and he pulled himself up to a sitting position. Ok now what? Mum and Dad always had a cuppa, a cup of tea when things were haywire. If you had news to tell them, Mum would say I'll put the kettle on. If you were feeling under the weather, Mum would say I'll make you a nice strong cup of tea. Ok, so I tell Dad I'll help him to the loo and make him a cup of tea. Dad manages to walk and go to the loo. I help him sit at the table and he has his cuppa. During this he is telling me he doesn't want to go back to bed. Dad sounds like a scared child, his voice wavering.
'if you don't want to go back to bed that's fine, drink your cuppa and we'll watch tv'.
Half an hour later he tells me he wants to go back to bed.
'are you sure?' I asked, worried because I was still reeling because of his fear.
'yep'. All his fear gone. Help him back to bed and since all I have heard is a few mumbles and him snoring.


Lewy has begun to cripple his spirit.

A couple of days ago Dad said to me he doesn't think he'll make Christmas. We'll get there Dad, Lewy hasn't got us yet.