The problem is that any organisation dealing with dementia is so strapped for cash that any relative who shows any sign of caring is viewed as a resource. We are not seen as people who need supporting ourselves.
That happens alot when your self fundingMy mother had reasonable support as her GP was quite proactive, and her (self funded) care agency was excellent and knew what additional help she was entitled to. So she had memory clinic visits, home visits from OT and the CPN, and Linkline/a keysafe provided free of charge. But if she hadn't had the starting point of the self funded care agency, I suspect less support would have been forthcoming as I wouldn't have known my way round the system. The two social workers I dealt with were pleasant but not useful - once they knew she was self funding I didn't see them for dust.
Could someone please explain the social service system to me. When mum was diagnosed our details were passed to various professional bodies who can support us. At the time they came in turn, and gave us their speech, and reassured us we were not alone. Great emphasis was put on looking after the carer. Skip a year and I'm needing some help, we were advised to future proof by gp and look for appropriate accommodation. This was great advice and I set to work, However the extra care housing has to go through social services for a home assessment, this has a huge waiting list, so I ask for carers assessment, this to has a waiting list. So I ask the question, and don't get a satisfactory answer. I thought you were big on looking after the carer, so no one ends up in crisis? Apparently their short staffed and growing caseloads.
Unless my mum is wandering inappropriately clothed, ringing the emergency services or burning housedown , we have to just to on waiting . So much for looking after the carers, I'm wondering who'll go first, I've got a good mind to go out tonight inappropriately dressed . Not sure anyone would notice.
But at least if you're self funding you can get on and do it, if the LA are (supposed) to be funding you can wait weeks just for a social worker to return a phone call let alone do anything.That happens alot when your self funding
Ah, what can we actually do. Well, the culture these days is that there is often short term outrage expressed, such as a mass demo and then life passes on to the next issue. Harnassing that to action is the difficulty. I think that the biggest change would come about if we stopped referring to the whole thing as memory problems - this may be true for the first stage but it is incredibly misleading therafter. Gives no picture of what we are dealing with. Thank you, I do hope your mums care works well. My OH is well placed in his nursing home. warmest, Kindred.None of it is anywhere near good enough and I suspect it never will be. Will this Green Paper help any of us in time? I very much doubt it but we can live in hope!
Mum has care starting in 2 weeks - she is self-funding and I hope that the standard she receives is good enough.
What can we actually do @kindred ? Someone well known needs to speak out publicly and we need to have some mass demo somewhere to shout our disgust