How to raise the money needed for social care.

For once, a blog with actual figures and a graph!

No one denies there is not enough money for social demand, meaning less people getting the care they need.

The above graphs are self explanatory. However, there is the discrepancy between working age getting more care not less compared to the over 65’s. If I remember right, Local Authorities are under a legal duty to provide care for those under 65 with Learning Disabilities such as autism. The gap will include those of with dementia.

The other graph is horrendous. Obviously, the same old excuse will be used; people living longer etc. BUT, that might be part of the reason, but no excuse.

In my failed attempt to get on the local Partnership Board as a service user representative (another blog on that later after freedom of information request granted and looked at), I read all the documents from previous Board meetings and saw the huge financial cuts being made. In no way, do I blame the executive officers as they have to do the orders of councillors. I used to work for an LA, in middle management, and know the pressure there is.

The Board has Councillors on it who just accepted the cuts. What these councillors should be doing is publicising the cuts in a personal way. Such as; we are having to cut this day centre, Johnny is full time carer for his mum, and works because she goes to the centre. Now he will have to give up work and go on Benefits so as to cover for the closure of the centre. Council executives are forbidden, by law, to campaign against cuts.

The public, as taxpayers pay for social care, but they cannot understand the crisis within it until they are in the system, by which time they are firefighting and have no time or energy to campaign.

Society needs to be told the realities, and the only people,that can do that are the Councillors who see the figures. Other organisations, such as Alzheimer’s should be doing the same, maybe even getting permission to use actual stories; the gory truth needs to be said; daylight is the best disinfectant.

I will give my views on how good they are at that in my next blog, but I think the answer is glaringly obvious.

Holiday Time

I know professionals require time off, but unpaid carers and the cared for don’t stop requiring socialising etc during the long Xmas break. It is not beyond the ken of authority to have people stagger their holidays through this season. For instance, those with out young families, those not Christian (we don’t stop the world for other religions holy days).

Obviously, the staff should get time off in lieu. If you think about it the NHS lose about 4% of their yearly routine ops time due to Xmas closures. As for bed blocking over this time, the mind boggles.

PS; told I wasn’t writing enough blogs, so expect a lot more, mainly about local issues…

(Party) politics and dementia

After such a bitter and divisive election campaign, I think it is time to reflect on whether people who try to influence policy makers, inter/nationally, or locally, regarding such things as dementia should show their political colours. Sorry, I have not capitalised the p in political party throughout.

We all have our own political views, but I truly believe that, in order to get anything done in this country, regarding dementia or otherwise one needs to keep ones views to oneself.

In this blog, I am talking about general dementia policy, not the paying of it, although that too should be cross party.

I will explain why; there are two main reasons. The first is that any policy for dementia will be a long ongoing one which will cross over into governments of another hue from the one that creates it. For dementia policy to become a party political football is a fail, for that reason, in my view. It requires cross party support from the beginning; this can be done. As seen in Scotland with Franks Law which gathered cross party support and was passed.

The second reason is that if any one individual who talks/campaigns about dementia is known to be the supporter of a particular party, they can be stereotyped rightly or wrongly. I am not a great fan of political parties anyway as they are too broad churched, hardly anyone can agree with everything one party says. People can never understand my politics as they don’t fit into any one party’s or ideology.

This association goes doubly so for getting endorsements from one party. IF there has been genuine cross party support, fine, acknowledge that. I am trying to get change locally, and I want to be known as pragmatic as to how things are done and who makes the change. To me what is important is that the outcome is right.

Yes, I am known for saying Scotland has a better outlook on dementia, this is not an endorsement of any party. I truly believe that the Scots, in general, have a different world view than the rest of the UK. Why is this? We had the Scottish Enlightenment, not the UK Enlightenment, my brother is a specialist in this, so some of what he says must have fed into me! The Calvinist views of John Knox are in the mix too. Also, as a relatively small country, we accept that cooperation with others, both as countries and individuals is more necessary.

As said, I have deliberately “ignored” the costings of policies as that is ideological. Some will say that is a cop out, I have my own views but if expressed would be agreed with by some and disputed by others, when what I would like to see is consensus so policies are owned by all parties and all of society, whatever political hue, so that they can be continued long term.

IT etc

This is a follow up to my last blog about social media.

IT can be very useful for connecting people, but we have to find ways of getting the unconnected on line. Otherwise we are talking in a self perpetuating bubble, this is also an offline problem. These are who need it the most; isolated, poor and probably rural. Living rurally and not able to travel far, if it was not Twitter, I would find it impossible to speak to others like myself, although as I have said before I cannot voice strong views, like one can one to one, as people take them the wrong way. I do miss having a good blether about the state of the world with other people, as I can and do argue most sides, if only to make me think! Websites are as bad, most posters are personally rude if you disagree with them. Maybe, there should be a private group/page for those of us with dementia so we could discuss such matters politely…

We use Echo a lot in our house, and if not for one problem, people with dementia should be introduced to it at the right time. The one problem is that occasionally it starts speaking, even though “Alexa”, or any like sounding word has been used. This confuses me now, and it will get worse. However, I would much prefer an Alexa in my room within a care home than the TV.

VR is another technology that can be used well, it can bring back memories and allow people to try art etc. I know there is a discussion about taking people to real places to recreate the memories but cost will always come first; I know this firsthand as such outings were stopped for that reason where I worked.

I have mixed feelings about robots doing care; serving food etc sounds alright. Intimate personal care would be difficult for a robot to do properly; the human relationship is not always there when being done by a person (although it should always be!).

Social media; what is it good for?

I use both Facebook and Twitter, but have serious reservations about them both. And I don’t mean the data gathering and targeted ads either, I want to talk about them and dementia. None of the comments regarding the negative side are aimed at any particular person, because as I try to make clear we are all needed to get things done!

Yes, they can be very positive, in that one can hear stories from around the world and know that you are not alone and also give/get advice.

On the minus side; there are two main problems that I see. Firstly, and this is well known, Twitter especially is an instant medium so one can say something without really thinking things through, and as people can’t read your body language they don’t always take it the way you thought you had written it.

The other problem is a more personal one. Being “stuck” locally, I get jealous of folk with dementia that can, and do, get around promoting living well with dementia. In my darkest times, I get angry because I feel that they are hogging the limelight for personal reasons; “old green eyes”. However, I know that any campaign, in this case dementia, requires folk to work at all levels. Franks Law is a prime example; it is fantastic that Amanda Kopppel and others worked strenuously to get it passed, with all the publicity, at a national level. However, local people all over the country need to prod their LA’s to actually use it properly. We are all vital to get things done, however social media, by its very method, prioritises the loud national people and not the local people work in the background. I have done research that has fed into national work so the importance of national work is well known to me; I even used to be a volunteer member of the board of Friends of the Earth EWNI, so understand the priorities.

I am having to learn not to jump in with a quick, maybe snide, comment on Twitter because being negative, and especially being personal, does not get anyone anywhere. That is why, with one terrible exception, I do not mention party politics.

I repeat there is not meant to be any personal complaints, except against myself! So, please anyone who reads this do not take offence.

Should we bring people back to reality?

This follows on from my post on why I help others.

People with dementia (pwd), often live in their own reality; waiting for their long dead mother/father etc. Also, care homes often use props such as faux old fashioned streets with their residents. I know there is a big debate about the morality of allowing pwd’s to stay in their alternative reality.

Many say we are morally wrong, as we are lying, to encourage it but, imagine; a pwd is anxiously waiting for their long lost mother to arrive. If you bring them back to reality they could get upset, angry etc, but if you misdirect by saying that so and so will be along shortly that should calm them down and they will settle down and return to “reality”.

In my last blog I said that I hate lying, but my endorphins kick in more when I see someone happy, and I really hate myself if they are upset when I could calm them down.

By taking the moral stand, I believe, you are putting your own self above the pwd as you are wanting to feel good taking the moral stand. “The end justifies the means” obviously does not always apply, but no rule can be set in stone; the Mental Capacity Act explicitly states that a persons capacity should be thought of for each separate choice not in the round.

Rightly, or wrongly, my chemical need to help others overrules my personal morals as it is too upsetting. Yes, good care and support can mitigate the need to lie, but all the care and articles in the world cannot stop a pwd entering their own reality. If the faux street allows them to live happily in a different reality, who are we to change that? What is wrong with it? If the props give them contentment, good. I know that I would rather be allowed to live in the past when in the latter stages. I don’t see it as a cosh, just good care and support.

Maybe, it should be asked as part of the Care Plan?

Yes, I am very selfish.

People keep telling me I am doing wonderful things for people with dementia and am an inspiration. TOSH!

I do these things because I am selfish. I am not naive enough to believe that change will come in time to help me. I do these things because I get a chemical high from them, an endorphin rush. If I do something morally “wrong”, I feel bad and hate myself. I have no choice over these feelings.

I don’t believe upbringing influences this, as I turned my back on my upbringing (private school, material worth=good). Neither is it religious, I am an atheist. It is “natural”, I can’t change it. Other people are hardwired to be adrenaline junkies, for example, but I am hardwired to be an endorphin junkie.