Charities in Crisis

[JPG1]

There's no such word as can't.

Karen,

My Big Brother always said "There's no such word as can't".

Meaning that if he could do whatever he wanted to do, with his own disabilities from birth, then anyone could do more than he was able to do, without complaining, without moaning, without whinging.

There is no such word as can't.

 

[maryw]

Can't or Won't is what I say to the kids!!

 

[jimbo 111]

Wonderful!!!!!!

This thread has developed into a discussion (or debate )
worthy of TP and the members who are contributing with their passionate views---- Debating NOt Fighting-----

It is at at this point though that had we got a chairman he/she would step in and say'ORDER'
The digression is good to let off some of the pressure and the dicussion so far has created plenty of steam My own contributions have been rather lightweight I am not a passionate campaigner
I have had my own share of problems in life,including the one that brought me to TP I can understand the passion felt by
those members whose views have been shaped by their lifes experiences

Although I am not one of lifes campaigners I admire the
discussion /debate so well put by those who do contribute
I realize that I am myself causing a digression,ut it is with the best intentions.

Please continue with your contributions (with some digression too) it will be a great shame to see this thread with members discussing such an important subject , suddenly finding itself
'dumped' somewhere where so very few members either reply or even view
jimbo 111

 

[danny]

I have been awake most of the night thinking about this thread


So.here are my suggestions to how we ,as communities can help develop/save dementia services.

Firstly I want to talk about memory cafes.A memory cafe is a group of carers and people with dementia getting together socially.It also is a place where ideas can be shared and problems discussed.Most memory cafes that I know are volunteer ran supported by the AS,the Rotary Club or are independant.
The memory cafes usually have activites ie quizzez,singing,crafts.The best model for a memory cafe in my opinion is one where the people with dementia and their carers take ownership,either by brnging in tea/coffee/cakes,compiling the quizzez etc etc.The group could do its own fundraising etc etc.A memory cafe can be held anywhere were there are WC facilities and a kettle!!!Support materials can be provided by the AS or the Council One Shops,guest speakers ie CPNs/OTs can be asked to come and share some info.


Another service that is important for people newly diagnosed is Cognitive Stimulation Therapy.This sounds complicated but it really isn`t.You need the same facilities as a memory cafe.Cognitive Stimulation Therapy in a nutshell is brain stimulation.This can be done based on themes using word searches/puzzles/music.Newly diagnosed people usually have a mini mental score and this needs to be reviewed every couple of months so that the group is still suitable for everyone.When a persons cognitive levels drop they can move onto the memory cafe,some people attend memory cafes and CST groups.There are lots of info on the internet and even a manual for delivering CST.You do not have to be a professional to deliver CST groups,just a bit of training would be enough.


Respite breaks/day care.There are several ways that this can be arranged.If there are no formal day centres in your area or you are not impressed with them then you can try this.Get a group of carers together,arrange a carer from an agency ,split the charge between you.One carer should be able to look after 3 - 4 people.

You could take turns using each others house for this type of day care.For anyone on a low income you can use your individual budget to pay for this or your attendance allowance.


These services are suitable for people with mild to moderate dementia,anyone with complex needs would need professional input.

The same type of day support could be arranged for younger people who would rather get out and about with their group.Most carers on an agencys books have business use on their vehicles.

All these services could be provided in a house as well as a community building.

So what do you think,it is simple.Lottery funding and other grants are out there to assist with such schemes.The Big Lotterys Awards for All is a very simple application and would cover alot of these services.

 

[Cate]

Too much fluff!

I have read all of this thread with great interest. I am not in any way a political animal, but I do feel passionate about the AD Society and all it can offer sufferers, and carers of this horrendous disease that took my lovely mum away from me little by little until she died as a result of it.

TP played a huge part in my understanding/education about the disease and therefore helped me care for mum.

I was shocked to see the size of the donation to TP.
Does it really cost that much?

Does the number of threads/posts have any bearing on the costs, even if this is quantified in man hours for checking threads/posts for being inappropriate?

Whilst I wholeheartedly agree there has to be some light hearted posts, I enjoy them too, there does seem in recent times to be a massive increase in this sort of thread/post. Some appear to have literally posted hundreds of times in a very short space of time, numerous a day. In contrast what seems to be very little in the ‘support sections’, which for me is what its all about. I would just like some reassurance there is no added cost to this.

I don’t in any way wish to come across as ‘bah humbug’or offend anyone, but with cash so tight for all charities every penny must be made to count.

 

[Soobee]

I used to be secretary of one local charity and later Chair of another. Someone on this TV programme said: "you need to take the time to think of new ways to get funding"

Whilst I can see what she means, when it comes down to it, most local charities have a group of trustees but really only 3 or 4 of that group do the bulk of the work for the organisation. Both of the charities that I was involved in have now closed, as their core services were being provided by other organisations. But whilst they were active, we spent our time 'firefighting' and sending off funding applications. There was never any time to sit back and think about how to do it properly and think up new and interesting ways to get funded! That is a pipe-dream thought up by someone who has NEVER been part of a voluntary organisation in their life!

The charities that are folding now are not the ones that are no longer needed, but necessary services which should be supported by central funding i.e. from the public BUT if it is left to the general public to choose how they allocate their money to charities they will of course choose the RSPCA and GOSH over a cause like Age UK.

 

[Soobee]

and in response to people saying "do we really need the fluffy stuff on TP?"

YES. We do. Because it's how you get to know the people on here who provide you with support when you need it. I think most of us are looking for people in a similar situation, with perhaps a similar outlook on life, and you get a feel for what a person is like by the range of their posts, not just about dementia itself.

Any extra cost to having the Tea Room would be miniscule because it is just an addition to the core TP service which is the support provided to carers and sufferers.

 

[Tender Face]

Right – gonna get my own ‘fluff’ out of the way first – because I am tired of the ‘Save the Tea Room’ debate coming up (or that’s how it feels). Soobee, I couldn’t agree more that the Tea Room is a very essential part of TP – always was in my opinion - and I leaned on it heavily when I was a hands on carer with little other social outlet and desperately needed a ‘laughter the best medicine’ fix.

Still drop in now occasionally when I feel particularly stressed with matters dementia and try to offer some light relief as well as taking some for myself sometimes ...... BUT I also agree with Cate .....

My understanding (Brucie – where are you to put me right?) is that graphics, pictures and animations take up a lot of ‘server space’ and therefore cost to run infrastructures compared to supporting ‘straight text’. If a forum which is meant to support ‘people with dementia and their carers’ is being dominated by such posts with no relevance to dementia then questions need to be asked.

I also have to question the ‘getting to know people’ idea. KatherineW has mentioned recently how many registered members and active users there are ..... talking thousands ..... so we get back to the question ‘is this a social networking site – or meant for support and the sharing of advice?’

I have had the privilege of meeting lots of like-minded people through TP – but our friendships have gone ‘off-site’ 99% of the time. I personally don’t feel the need to ‘parade’ them on TP. And a lot of people posting prolifically in the Tea Room now are NOT socially isolated/housebound/24/7 caring/too shattered to do anything else at night than flop at a PC. THAT was my understanding of its use and purpose (and indeed was once told so in no uncertain terms!!!!)

The point is: If charities are in crisis – how much money is being spent supporting a core of members on an online forum who choose to chat amongst themselves?

Right ... back to the point of this thread ..... what was it? Been diverted again ...

I had something serious to say – but will leave it there. Wasting my time.

Karen

PS: Danny, thanks for your input - taking a lot on board from this thread. Much appreciated.

 

[Cate]

Sorry its taken so long to respond, been busy with hospital appointments with hubby.

and in response to people saying "do we really need the fluffy stuff on TP?"

YES. We do. Because it's how you get to know the people on here who provide you with support when you need it. I think most of us are looking for people in a similar situation, with perhaps a similar outlook on life, and you get a feel for what a person is like by the range of their posts, not just about dementia itself.

We will have to agree to differ on this one. I would have thought any member who wanted to check out if I had first hand experience, thoughts and or advice on AD were similar to their own, they can easily read my threads/posts.

Whether I take a good photo of my garden is another matter, but I dont think it gives any insight at all into my experience as a carer for a loved one with AD, its nice, but has nothing to do with the issue.

I have no problem at all with the fun on Tea Room, I enjoy a bit of fun like the next person, my point was, is there a cost,

Any extra cost to having the Tea Room would be miniscule because it is just an addition to the core TP service which is the support provided to carers and sufferers.

............and I see my question has been answered, that the cost is miniscule. Really pleased to know that.

I still have concerns that TP is being used as a social network site, these sites are already out there and are fit for purpose, I dont understand why folk should think its OK to use TP in the same way, just my opinion.

 

[jenniferpa]

I think some of us would disagree that all social networking sites are "fit for purpose". Sadly, I see many of those as less than nurturing and distinctly "wild west".

Just an opinion of course.

Hope your husband is doing OK Cate.

 

[Cate]

Hi Jennifer

Love your 'wild west' quote.



Sadly hubby has had another Stroke just about a year after the first one, hes not doing so great, bigger problems with mobility and this time eye sight too, still we muddle along. Thanks for asking.

 

[jenniferpa]

I am so very sorry. My mother lost half her visual field (Hemianopsia) after her strokes. Exceptionally hard to deal with and very bizarre. I found a website that showed what it was like and it was very disturbing. Of course, that may not be your husband's problem, but many of the visual problems related to strokes are counter-intutitive.

 

[Tender Face]

Humph – promised myself I wasn’t posting again for a while – but the point is, Jennifer, social networking sites are not generally funded by charities ...

And if anyone wants to know why I have come back to TP and this thread it is because I am STILL trying to find someone to get mobile phones to I have been collecting for AS ..... in spite of repeated emails to two different links both you, Jennifer, and Katherine, have supplied over the last how long? (thank you) – I am STILL getting nowhere .... and just had a latest ‘undeliverable’ from the link given on the AS website .... and if charities are in flipping crisis why are they not making it easy for those of us trying to GIVE in whatever way we can????

And yes, I am wondering how much crisis AS is in if they can’t rise to these queries and accept hard-earned (begged for) donations promoted on their own website?

Glad you are reassured, Cate but not sure that Soobee is a representative of AS and can confirm the accounts for certain? (no offence Soobee, you know what I mean) Perhaps someone could answer my previous question about the cost of the infrastructure and how it supports ‘what’? Or how much is involved in support costs in supporting the infrastructure?

Mumble, mumble – wondering if I can get these mobiles and accessories (so freely donated because people knew ‘the cause’) to the local ‘Cash generator’ shop and get at least something for them and make up the difference I promised my pals I would be sending off to AS? It surely shouldn’t be this hard?

Sorry, just tearing my hair out ... as per .....

Karen, x

 

[Soobee]

no - fair point Karen! My observation was based on how I think the site was originally set up - there could be additional costs to the extra rooms that I don't know anything about and I should have made it clear that I don't know.

The reason I believe that's unlikely is because the infastructure is already there - most of the cost of setting up a site is ensuring that it functions as intended. Once you've got the main room going, my limited old programming knowledge would suggest you can add to it easily by adapting what already works. Hence - tea room is probably just the main room with slightly different code. It will have cost some time, money and patience to ensure that the tea room is private though.

 

[Cate]

Ah OK, Soobee I thought you represented the AS in some official capacity.

I am sure you have point when it comes to the set up costs, my concern is that since I joined back in 2006 there has been a vast increase in the number of thread/posts, which is fantastic it means that TP is reaching more people who have AD or who care for those with AD, as I have said before, when I was caring for my mum it was a life line and an amazing way to learn how to cope with the practical and emotional.

However, as we all know members of staff of the AS monitor most, if not all threads/post for 'wrong doings' be it 'advertising' etc etc. so there has to be a cost to this in 'man hours', my point is, is the 'fluff on Tea Room' adding to this cost, which is 'nice', but not vital to the majority of users.

I would not in any way advocate getting rid of Tea Room, it does serve a purpose, it provides light hearted relief, but I do wonder if it could be curtailed in some way.

It just breaks my heart to see hard won donations maybe not going to where it should be, and in my view, that would be towards research so that some time in the future loved ones do not have to go through what we have lived through.

 

[Helen33]

However, as we all know members of staff of the AS monitor most, if not all threads/post for 'wrong doings' be it 'advertising' etc etc. so there has to be a cost to this in 'man hours',

You say "as we all know". It is my belief that this is done by people volunteering their time free of charge - namely Moderators.

Dear Kassy,

It has been (and still is at times) a lifeline to me and therefore it enabled me to give better care to my lovely Alan.

Love

 

[KatherineW]

It may be helpful to clarify that the cost of the Tea Room is negligible, both in terms of set-up/running costs and ‘man hours’.

The volunteer moderating team do the vast majority of ‘post monitoring’ on Talking Point, across all sub-forums, and as Helen pointed out, they very kindly do this for free.

Paid staff generally spend most of their time monitoring posts in the main forum – mainly because that’s where most of the discussions which might need input from the Society tend to be.

Kassy’s post alone indicates why the Tea Room is so important to many members of TP who may be isolated, and for whom socialising in the ‘real world’ might not always be possible.

I think that one of the really positive things about having a space for lighter-hearted discussions on TP (rather than going to a different social networking site), is being able to share humour and more joyful moments with the very people with whom you also share a connection to dementia.

It may also be worth mentioning that websites such as Facebook require the use of a real name and have a very limited function for discussion groups. TP on the other hand was specifically created to provide a place where members can register and protect their identity, and can then seek support from the other members who have similar experiences of dementia. This is what makes TP so unique and so helpful.

On another note entirely, we’re looking into Karen’s problems with the mobile phone recycling link.

Thanks,

Katherine

 

[danny]

There are several people who use the tea room who have dementia.

Are they just fluff.

I wish everyone would leave the tea room alone.There are many sections to TP, if you don`t like a bit of social chat and banter then it is easy,don`t go there!!!

By the way,this is a sweeping statement in general,I don`t want an argument etc,I am merely expressing my opinion.

 

[jimbo 111]

I used to have a problem with Tea Room posts
My problem was related to the frustration of seeing posts that seemed to be irrelevant pushing the post of for example a new member desperate for advise further down the list before it had a chance of beeing seen on New Posts
I did make my point in a thread, and several explanations were given

At that time I was of the opinion that the 'tea room' posts
should not be shown under the New posts heading and priorty given to the more important issues

BUT since then I have come to the conclusion , reading so many posts for and against , and taking my own experiences into account ( my problem was never associated with the financial implications, in fact until I read some of the posts on this thread I didn't know they existed)
it would be very difficult and not be helpful to change the existing set up

I enjoy reading items in Tea Room, I like to read posts of the members who give very serious thought to the problems of progress , or non progress, of AD research etc, and I can be selective on which posts I read.
To come to my point on this post( about time)
I note on Todays Posts at this time there have been 67 posts and a very small number of Tea Room ( if you wonder why I cannot quote the number of tea room's it's because I forgot to write it down when I counted them )
I think I can live with this , and would hate a change that would rob me of a quick look at the "selection"
Having said all of that, I realize that this is a distraction from the purpose of this thread. I apologise but would like members who have differing opinions to know that there are many of us who appreciate their contributions to a discussion and give us food for thought
jimbo 111

 

[Izzy]

Well said Jimbo. X