Black hole

[Loulou]

Hi all - I haven't been on here for nearly a year now. I felt that I knew what I needed to know and could do it on my own - How stupid was I !! Things have escalated so much since my last posting - mum definately deteriorated and is now in hospital after weeks of not sleeping / falls / not eating etc. Just been told that whereas before we were told it was multi dementia / alzheimers etc they now think it is Lewy Body. So here I am again trying to find out as much as possible to try to cope with the next onslaught. Family situation has got worse - 3 sisters now not helping out at all but at the hospital like dutiful daughters as usual - too little too late I'm afraid.
Sorry to sound so negative BUT just feel like this is the only place I can sound off without upsetting those who are close (!!) to me.
Any information / advice on Lewy Body Dementia would be greatly appreciated.

 

[mw52]

Hi

Hi
My mum has LBD - I can offer is an ear to listen and a virtual shoulder to cry on (which I seem to be doing a lot of these days). There is a site for LBD but it's based in america nad I haven't found it easy to access (don't know if that's due to my lack of computing skills or the slowness of the internet connection).
When my mum was assessed for full-time nursing the care my sister and I asked the psychiatrist how we could expect the "disease" to progress and he said he couldn't give us any indication! So unfortunately just case of grinning and bearing it - and regular visits to TP! I find the forums and posts a great source of comfort. Sorry to hear your sisters aren't supportive - you will find a host of "adoptive sisters" here on TP I am sure!
M

 

[Lucille]

Hi Loulou

As mw52 said, you'll find plenty of 'adoptive sisters' on here! I'll be yours and you can be mine. Similar situation trying to bear the responsibility whilst others sit around and do rock all! Except for hospital visits of course. It's an odd phenomena!

Can't help you with LBD but others will be able to. Keep your chin up. You're amongst friends here.

 

[Loulou]

Thanks for the replies - really appreciate it !!
It's just nice to come on here and let off some steam, and nice to know you're not the only person with sibling problems.
Good luck to you all,