No one Cares about Learning Disabilities/ early age Dementia

[rosemary]

..Sign of old age!!!!

You're in good company

[rosemary]

Morning Jeanette,

Are you ( and others here ) aware of this hosted chat tonight

see here

Live chat with Katherine Watt of Alzheimers Society on July 26th 2010 at 7-8 pm

[Jeanette]

I am aware of it Rosemary and hope to be there. Thanks for thinking of me/us. I have quite a big viewing figure on their forum site.
(not as big as Carers UK though ,lol.) Still nothing going on here but very recently my daughter and myself have had to fill in a self assessment form. Obviously I filled hers in.
Am just hoping a recently 'closed'residential home might open for our local GOLD.D group. sounds as though the trust that is responsible for it doesnt want it to become a day centre for a special need. I just cant find out any information about it. The powers that be seem to want to keep it very quiet. Its not because I havnt asked the questions.
anyway ..thanks once again Rosemary.

Jeanette.[/b]

[Jeanette]

Thought you might like another update.
Things are certainly getting worse. The GOLD day care in a suitable setting couldnt happen because there was a clause in a contract that said a day care facility on those premises wasnt allowed.It had been a residential/respite home before.
The new L/D complex by us that wanted to do daycare as well as residential and respite couldnt get the city's backing for daycare.
We have been told to look at a centre for The VISUALLY impaired who take totally compatable clients for visually impaired people with L/D. So just how suitable do you think a person with Early age dementia with epilepsy and downs syndrome would fit in there!!!!
Other than that it has been suggested we look at a GOLD room situated in a centre with over 200 clients!!!
AS I said right from the START NO ONE CARES ABOUT PEOPLE WITH L/D AND EARLY AGE DEMENTIA!!!
they have the excuse now of having to reduce the country's debt !!! But there again ..we are only in our seventh year of looking for a suitable place.

[jessie]

No-one cares & there's nothing offered to my 85-yr old mother either. It's not age that's relevant to the authorities, it's that they have a check list & all the boxes have to be neatly ticked - if not, the person is discarded.....at least that's my experience

[Jeanette]

Thought those who are interested might like a catch up. We stiil have no suitable day care service,and though the powers that be have said they are looking for such a place for the GOLDD (growing old with Learning disabilities and dementia) service set up, still havnt found one.
Have any of you thought about the recent news about Elderly people being treated badly in hospitals and the service has to be improved ASAP, and also the dementia services need to be increased dramatically because so many are going to suffer from it? It is my opinion that the appalling services for people with L/D should be included in both, yet they are not.!!!! Are those charities and services frightened that L/D will reduce the amount they get if brought into the equasion? We should be working together not appart.Also think how many years a carer has been caring for a person who has developed dementia as well as having a learning disability. In my case going into forty four years. So shouldnt we be a high priority? Well in my experience the answer is no for the simple reason the POB know we will continue to care, no matter what, other than being very ill ourselves!!
We now have The Dementia strategy,The L/D strategy( valueing people) and the Carers strategy , why am I not seeing an improvement????
Sorry if I sound so pessimistic and hope that others in a similar situation are not experiencing the same.
Might just be me 'looking for the moon'!!!

Jeanette

[Jeanette]

At last ..What I want to hear. The Alzheimers society are making aware big issues on Dementia, and including early age L/D at last.
http://www.thisisjersey.com/2011/03/05/ ... a-warning/
All Health ,social care and other charities should be saying the same!!

Jeanette.

[rosemary]

Good news Jeanette, thanks for sharing. We know this is something you have pushed for a long time now.

x

[charles47]

Thought you might like another update.
My city is doing a project for day care for growing old with learning disabilities (GOLD) the other side to where I live (miles away) and at this moment of time I cant find out if the council will fund a place they have found that would be suitable. If it does happen, and proves successful then we should get a similar place this side. You can guess already it is a long time off.Meanwhile I have been diagnosed with a severe heart condition and having an op in July ,dont know the date yet. Have a review about my daughter next week so have to see if she can go into her respite home for a longer stay. Have been told I wont be well enough to care for her for approx three months. Will let you know the outcome .Wont feel positive until I know she will be safe with people who know and care about her. Will postpone it if she cannot stay there, but would rather it was over and done with ASAP.

Jeanette.

[Lazydaisy]

Jeanette,(((((hugs))))).
I hope that you are able to find somewhere for your daughter that you are happy with,and where she will be safe and cared for.
I hope too, that you are able to get some rest when you need it.Sorry to hear about your heart problems.x

[rosemary]

I will second what Jane has said above.

You know where we are if you need us.

x x

[Jeanette]

YThanks Jane and Rosemary. Your kindness's are appreciated.
Jeanette.

[Myrtle]

Good to hear from you Jeanette.
Hope you get all sorted and I wish you the very best x

[charles47]

Thanks for the update and take care, Jeanette.

[SezzieC]

(((((Jeanette)))))

Take care.

Sezzie x x x