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[SherbetLemon]

Hi. I registered here a while back but this is my first post. I care for my Mum who has dementia/Alzheimer's diagnosis. There is a huge history of lack of care by our GP ignoring my pleas for help for over three years and Mum was only diagnosed in September. I am not happy with the lack of care she is getting and I feel we are being swept under the carpet. Social Services are not helpful and making my life more miserable. Everything in the system is working against, not for me or Mum. There's a whole shed load of social issues going on here too and I don't want to bore anyone with it but it does feel good to be getting it off my chest.
I'm not one to readily accept help, but when it is offered it is a one size fits all kind of package and isn't suitable for our needs but no one will hear what I'm saying. I think I've been in touch with every organisation going now, and its the same story: a shortage of volunteers or no money or any one of a number of excuses not to help that I've got to the point it is easier to deal with things myself, no matter how ineptly, than to get constantly disappointed by misinformation and even lies. The worst thing I ever did was accept Direct Payments from our local council.
I wonder if anyone else is up against the system and feels helpless too?
I feel as if I'm vegetating too. I've gained weight and lost my fitness and this is very worrying for me. I am as housebound as Mum is now and struggle to get simple things done like go to the bank and post office. Thank the gods Tesco delivers!
Sorry, don't want to sound like I'm moaning, things could be a lot worse, but I just wonder sometimes where I'm going with all this.
Thanks for listening.

 

[Sue J]

Hi Sherbert Lemon - they're lovely

I feel like you do most of them time, and am not normally a 'moaner' but am a doer but my own symptoms seem to have turned me into a 'moaner' I care for a friend and try to get help for me too and all one seems to get is excuses. I am sorry that things have not been good for you re. Direct Payments but you confirm my decision that it was not the route for me. The other route, increase in DLA is still proving very challenging too, an appeal likely

I know what you feel like re. exercising yet stuck indoors, perhaps we should start an exercise thread I try an exercise daily when I remember.

Can you arrange a sitter from anywhere so that you can have some 'me time' and get out?

Best wishes
Sue

 

[AlsoConfused]

Just a quick welcome to TP from me ...

 

[fizzie]

Welcome, don't worry about letting off steam, we all do it.
There is a lot of help out there - it is just finding your way through the system. You say you have exhausted all possibilities but I'm really surprised that you can't get some good advice and signposting from either Age UK or Alzheimers Society

Age UK have a helpline open 8am - 7pm, 365 days a year . why don't you give them another try 0800 169 2081 - this is a freephone number

Alzheimer's also have a helpline and will signpost you but I know they have some closures in the next couple of days and are not open all weekend - it is a local call rate
0300 222 1122

Do come back and ask some more questions, there are always people here to help
xxx

 

[Izzy]

Here's a link to the festive period opening hours for the National Dementia Helpline -

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=3138

That page also gives you arrangements for other helplines over the festive period.

 

[Essie]

Everything you've said sounds all too familiar Sherbet... Just a quick note on one point, you can opt back out of Direct Payments apparently so don't feel that you have signed once and that's it forever.

And welcome to TP of course!