I have read through this thread with growing interest. Not really sure where to start as so many bells have rung in my head. Any way here goes.
1) I think what gets me with the happy pictures of living well with dementia is where is the balance? Where is the coverage of not living well with dementia? The Carers virtually house bound looking after a loved one, getting out mostly to doctors appointments, etc. The sickening moments when the carer realises some other capacity has finally been lost. What do people think carer burn out means?
2) So right regarding the funding. No problem here so please move along. I sit and watch politicians pontificate on the social care crisis, usually around the time they move onto the need to reduce taxes, seek value for money, or wheel out their pet spending project. Initially it grates, then it jars, then it really annoys. Remember Carers have votes matey.
3) To be fair to the wider public I think until you actually come into direct contact with dementia you genuinely have very little idea of what it entails. An aging population means more people are experiencing dementia, numbers which will only grow. Certainly the case for me in terms of direct contact with the condition. Become a carer and you start a journey where you get a great deal of knowledge and experience. For the general public arguably it is a beyond a question of not caring, more just not knowing. They have families, careers, social lives, financial concerns, children to bring up, etc. The things we mostly all did in part before we became Carers. Those still doing them and caring I really feel for most of all. However that excuse wears very thin when close relatives and friends sometimes do a runner or become helicopters, randomly landing making a lot of noise, criticising, making at best poor suggestions, then taking off again. Suddenly reality is crashing through the door,
4) I find now contacts in a local Carers group, this forum, etc, have become my reliable guiding stars. Life has constricted, loneliness becomes a new companion in my life, I experience negative feelings, etc, then try my hardest to be positive. For me the growing feeling of disconnection with the “outside world” is the hardest thing to deal with. Is that part of living badly with caring, a character flaw, or just the inevitable lot of most Carers? You tell me.
4) When out and about with mum I find the people most helpful are those who have experience of caring at some point in their life. Buying something in a shop and repetition starts. Do you get the look “please do something about this, make it go away, I am being made to feel uncomfortable”, or do you get the compassionate look, saying I know what you are going through? A person with experience of the road beyond “living well with dementia”.
Please keep posting threads like this one and others. Relative newbies like me learn so much. I guess to quote a hackneyed politician “we are all in it together”, only some more than others chum. Or the film “think bridge beautiful bridge and it will be there”.