Son of sufferer, son of carer.

[Frustrated of Yorkshire]

Having dealt with this horrible condition for over 2 years, and approaching the 'need help' stage, we are astounded by the lack of joined up planning from the authorities and charities. The whole system is a talking shop with ' on the system,' ' have you over £23k' tick boxing.
An amalgamation of these services, to free up funds to actually get help into homes is needed.
Does anyone else feel the same?

 

[Kevinl]

It must vary by where you live, I've nothing but praise for most of the help available if you want it where I live.
My now late wife got early onset AZ, mum was diagnosed with a mild cognitive impaiment so I had them both here with me.
Mum technically was covered by a different local authority at her home so they were responsible, it got complicated.
I turned down offers of help, just because I'm a man doesn't mean I can't cook and clean, but I did have to prove it.
Do men caring for women get an easier ride, where women are expected to be able to cope in a way domestically that men are assumed to need help until they prove otherwise.
Move over our side of the Pennines, as I say my experience with 2 people and 2 LA's. K

 

[northumbrian_k]

Hi @Frustrated of Yorkshire and welcome to Dementia Support Forum our friendly and helpful community. I can understand why you feel the system is frustrating and inadequate. That's because in large part it is. But in the short term that is not going to change so one must work within it. The experience of members on this site is an invaluable resource that you can draw on. You can ask questions, share with people who truly understand and let off steam when you need to.

 

[Frustrated of Yorkshire]

Hi @Frustrated of Yorkshire and welcome to Dementia Support Forum our friendly and helpful community. I can understand why you feel the system is frustrating and inadequate. That's because in large part it is. But in the short term that is not going to change so one must work within it. The experience of members on this site is an invaluable resource that you can draw on. You can ask questions, share with people who truly understand and let off steam when you need to.

Sorry, not my way, you have to work to change. First step, merge the dementia charities to form one body to present a plan to government. By changing your approach you have more influence to pressure government to change. Working within the current inadequate system is letting all the sufferers and carers down.

 

[Kevinl]

Dream on, because it's never going to happen, charities give their money to the same cause, how would that work?
Personally I see the sense in that what I joined as the Alzheimer's Society talking point is now. Dementia talking point, more inclusive maybe. But so many people on here still post on here about specific forms of dementia, fore it's become more exclusive than inclusive. K

 

[maggie6445]

Sorry, not my way, you have to work to change. First step, merge the dementia charities to form one body to present a plan to government. By changing your approach you have more influence to pressure government to change. Working within the current inadequate system is letting all the sufferers and carers down.

@Frustrated of Yorkshire ,I totally agree with you! Every organisation seems to signpost you to another and you end up going round in circles. I think it's a waste of resources

I too think these charities need to merge and work in unison to pressure government!

I too am a frustrated of Yorkshire!!

 

[maggie6445]

Having dealt with this horrible condition for over 2 years, and approaching the 'need help' stage, we are astounded by the lack of joined up planning from the authorities and charities. The whole system is a talking shop with ' on the system,' ' have you over £23k' tick boxing.
An amalgamation of these services, to free up funds to actually get help into homes is needed.
Does anyone else feel the same?

Definitely agree with you

 

[northumbrian_k]

That is why I said in the short term. I needed to work within the current system to get my wife the care and support she deserves. Not to have done so would have been to let her down. There was an immediate and urgent need that couldn't wait for changes to the system.

Strategic change is required but that takes a lot of time and effort as well as a clear strategy. It is possible to deal with the immediate whilst also seeking change that will be effective and last for the longer term. Merging charities and presenting a 'plan' may be one way of making progress (although to me sounds simplistic) but there are likely to be other options.

 

[northumbrian_k]

Something like this coalition of 5 dementia charities working together:

A coalition calling on the next Government to take action on dementia

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org