Carers experiences of Nursing Homes

[lesbac1]

" I refer back to your original post"

I refer you back to your original post.

Your initial statement implies that your research is undertaken under the auspices of AS -- that is not strictly accurate, is it?

Secondly, have you any idea what a research project entails? If not, I suggest your google research project guidelines. This site will give you a starting point:

http://www.cardiff.ac.uk/hisar/people/jh/GUIDELINES ON RESEARCH PROJECT DESIGN.doc

In fact, what you are doing is asking for people's stories of nursing homes, in the hope that they will support your own biassed view.

This has already been done, many times. I suggest you run a search on this forum on nursing homes and see how many hundreds of posts come up.

There is already an AS factsheet on what to look for:

http://www.alzheimers.org.uk/factsheet/451

So your 'research project' is certainly not research, which should be intrinsically original work.

And as everybody knows, managers and owners are always " up front" in their description of care offered.

 

[Marianne]

Quote"....is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition."

I understand from this statement that I can discuss my dad's severe dementia on TP as long as I don't mention Abuse. Unfortunately the Dementia and the Abuse ran parallel to each other.

It would appear that someone called Katherine makes the decisions on TP. So may i ask why have Brucie and Hazel decided in her absence to take it upon themselves to insult and I have to say, behave so childishly towards Les who is only guilty of trying to help Dementia Sufferers,

I am confused and embarrassed by this behaviour and expect an apology would not go amiss. So before I enter into a hissing fit I will take my leave of this forum.

 

[Brucie]

It would appear that someone called Katherine makes the decisions on TP

Let me explain this point, simply.

Talking Point is a forum that is resourced by the Alzheimer's Society.

The forum is moderated by a team of volunteer carer moderators in the interests of the membership.

In situations where actions outside moderation are required - for example, contacting a branch to verify something - then the support person at the Society is contacted by me and I ask her to do that. It is not moderation after all.

There have been no insults and no childish behaviour on anyone's part, simply interchanges of posts, albeit spirited.

In my neck of the woods a statement along the lines of having not gained an expected response from carers, therefore terminating all association with the wider Alzheimer's Society and writing to Neil the CEO, well, that falls under the description I gave.

Naturally, as the term clearly means something different elsewhere, and to Les, I'll happily withdraw it.

 

[Tender Face]

Dear Les ....... can I just check I read your original post right?

"I am currently working with ..' - ha - now me, too .... I work 'with' a lot of organistaions for nothing .... campaigning ... lobbying .... serving cups of tea if that's what I can do best at any particular time ... that does not mean I am declaring I work in any offiicial capacity for them - and sorry but unless I missed something (because I am being made to feel like a blithering idiot tonight!) you never did say you were working FOR any organisation in any official capacity .... just 'with' ....

Nor (and please correct me if I am wrong again) did you suggest this was an 'official' research project? Now, I know I need glasses but I am sure what I read was:

I am hoping to undertake a research project

Emphasis on 'hoping'!!!!!

I am sorry your good intentions have been hijacked by others who should have been accused of 'hissy fits' themselves and sparring with posters for their own personal reasons ........ I am much like you ... and will PM you and others on this thread ...

'Pressure Group' sounds exactly the right idea ..... and sadly we have to accede it will not happen here where members (thank God who have such a wonderful experience of care homes that they have not had the horror of witnessing anything different) ... those of us who sadly have, need to make sure we make a stand and stop 'air-brushing' what really happens ........ and ensure all care is to the standards some people here have only ever witnessed and daren't take their blinkers off .......

Well done you for your efforts. I am horrified that any efforts for the greater good could be 'shouted down'.

Love, Karen, x

 

[Marianne]

Les
Could you please tell me exactly how any information you may gather will be used in association with improving care.

When you have collated the information, what are your plans then. And who at Alzheimers Society has asked you to get this information.

 

[connie]

Karen, rather a sweeping statement:

Karen:and sadly we have to accede it will not happen here where members (thank God who have such a wonderful experience of care homes that they have not had the horror of witnessing anything different) ... those of us who sadly have, need to make sure we make a stand and stop 'air-brushing' what really happens .......

Lionel first experience of 'permanent' care was not good in any way. I spoke on Radio 4 along with Neil Hunt, and had articles published in national and regional newspapers. Sat on the opening panel with Proffessor Ballard, Linda Bellingham, Neil Hunt etc at the launch of the Dementia Care Straregy.
All very well documented.

We had afterwards a couple of threads running about good and bad care homes and the pressures it puts carers under.

Lesbac: much vaunted Dementia Care Strategy which is due to be debated soon and should recieve cross party support although, as usual, no mention of funding all the idealistic proposals has been mentioned. But, at least it is causing politicians to sit up and take notice.I believe that the AS had a lot of input during the consultation period.

 

[Tender Face]

Karen, rather a sweeping statement:

Connie, I'm sorry - I'll accept that and apologise. Some of you know within a few short months I believe I saw about the best and worst of 'care' homes ....... and I thank God my mum's last days were lived out in what I believe was one of the best and my aim is to work individually, locally and beyond to get every 'home' up to that standard for those who need them .....

But in terms of 'sweeping' - there's a lot of poeple would rather these issues went under the carpet so to speak .....

Love, Karen, x

 

[lesbac1]

Hoping to introduce a new service for AS members in our area.

Dear Marianne,

I have already mentioned on previous threads that I would like to hear from carers about their experience of Nursing Homes. I am an advocate of person centred dementia care and would like to see it more widely adopted. Any information I gather ( good experiences and bad experiences)will form the basis of a paper I hope to write in support of carers taking an objective person preferably from the AS with them when they go to look at potential Homes in which to place their loved ones. As I have also mentioned many homes purport to practice person centred care without actually doing so. I am coming at this problem by assuming that many, although by no means all, people do not understand what person centred care entails and can be blinded by science and misinformation when first viewing a home. Hazel, for instance, is quite happy with the care her husband receives in a person centred way as is Connie. Unfortunately, for a variety of reasons, they have not given details of what aspects of their loved ones care they particularly appreciate. The same is true of people who have have had negative experiences. In answer to who, from the AS has asked me to conduct this research I, again, have to point you in the direction of previous threads. But the short answer is that our particular branch has few members and yet covers a vast area and we have not had a branch manager for some time.The few volunteers we do have need to work off their own initiative. So nobody has asked me to do this research although I have mentioned my proposal to our administrator and the area manager. With hindsight, and judging from the negative response this " project" seeems to have caused I wish I had either never sought the views of users of this forum or else turned a blind eye to what I believe to be a useful aid to members and jsut toed the Society line which appears to be that if you are passionate enough to really care about trying to make a difference you are best to keep your thoughts to yourself. This is at odds with the welcoming remarks of the CEO who positively urges all concerned with the Society to voice any new and innovative ideas. I would be really interested what members think my motives for seeking their experiences are?. Please let me know someone.

 

[lesbac1]

You sound like a wonderful lady

Karen, rather a sweeping statement:

Lionel first experience of 'permanent' care was not good in any way. I spoke on Radio 4 along with Neil Hunt, and had articles published in national and regional newspapers. Sat on the opening panel with Proffessor Ballard, Linda Bellingham, Neil Hunt etc at the launch of the Dementia Care Straregy.
All very well documented.

We had afterwards a couple of threads running about good and bad care homes and the pressures it puts carers under.

Dear Connie,

You seem to be a very nice, intelligent and well balanced lady. It is because of these qualities that I feel I must ask you " What is so wrong with what I am proposing?". I would really value both your opinion and advice. Thanks in anticipation. Les

 

[JPG1]

Les,

Perhaps not questioning your 'motives', as such, although that may be your own perception of it all, just seeking further info as to exactly how you feel our responses can be 'targetted', if you like, so as to be more specific to your plan. You say your branch has few members, covers a vast area, with no branch manager and few volunteers. And that you are hoping to be able to make available an objective person from AS to accompany people visiting homes for the first time.

So are you planning only to accompany those "few members" or planning further afield, to attract new members somehow or other?

How are you planning to reach and identify those "potential first-time care home visiting persons"?

Or are you only interested in 'nursing homes'? There is a difference, when dealing with dementia sufferers, for obvious reasons.

So the questions are intended to allow further clarification of precisely how any TP member can be of assistance.

Otherwise, we will all be able to talk until the proverbial cows come home about our positive or negative experiences of the world of dementia care, but may be wasting your time, and our own in the meanwhile.

PS. Just read your latest post to Connie: many a woman prefers to be called a woman, rather than a lady, so ... tread carefully. (I speak from personal experience of the frequent inadvisability of using the term 'lady' or 'ladies'.)

 

[lesbac1]

Conservatives v Modernisers

Hi,

Erm, my last message to you was a PM and yet you answered on the forum?????. We have just recruited a new outreach worker for the local area I live in, supposedly have funding for a 3 day week branch manager, and have just managed to recruit some new volunteers. We intend to gain more members by promoting the aims and philosophies of the Society just as any other branch does and ( you will forgive me hear if I just have a quiet snigger to myself) by introducing innovative programmes such as providing objective advisors to accompany first time viewers to Care and Nursing Homes. First we need to lnow what people find good and bad about the nursing and/or care homes they visit but, as that seems to be causing a lot of consternation, perhaps we should forget new and innovative and stick to the current system of not helping carers to find the right home. Is everybody now aware of what I am trying to do now?.

 

[JPG1]

Erm, my last message to you was a PM and yet you answered on the forum?????.

I’m afraid you’re wrong there, Les!

I posted my last message at 9.05 pm; your PM to me was timed a good few minutes later than that, so not guilty. I had posted before you had sent your PM to me. Everything in my post was taken from your previous posts. Nothing mentioned from your PM, because I had not even read it then.

Thank you for your clarification. I for one am not sure how I can target my own responses any further, without trawling through our own history in great detail, and I think that is something I mentioned much earlier in this thread.

Good luck with your project. And this is most definitely coming from a moderniser.

 

[lesbac1]

Thank you to all who showed an interest

Hi to everyone,

Thank you to everybody who contributed to this post. I was a little surprised at some of the responses but, after all, we are all individuals and all have had different experiences. I always value others opinions and the right to free speech and believe that one can learn from every experience.
After a lot of thought and soul searching over the last 24 hours or so I have come to the conclusion that this was not the correct way to go about things and offer my sincere apologies to anyone I may have upset. I have also come to the conclusion that Brucie was correct in his observation that I shouldn't let this affect my view of the wider Society. I think I was probably getting over tired when I spoke of leaving the Society. I definitely intend to stay as a volunteer and help build our branch from its current embryonic form into a strong, supportive, and succesful arm of the Society in order that we might influence the improvement of dementia care within our area.
Together we stand, divided we fall. I wish you all the best of luck with everything in the future. Again, thanks for the threads and the personal messages.
Les. ps. Bruce, having read back through the threads, I do think I was a little over emotional but, hey, thats what passion does to you sometimes.

 

[Brucie]

Hi Les

if this journey through the world of dementia was easy, everything would have been sorted out long ago!

It is only through the carers caring, the resourcers providing, and those helping who really don't have to travel any way through this nightmare - but who, through good hearts do try to make a difference - that the best can be made of a difficult job.

Hope the hissy fit comment didn't alarm you too much - on my part it was also frustration that someone who might help would be put off by comments from members who were only really trying to work out the scope and provenance of your research.

While there is a bunch of people who have had bad experiences of care homes, there is also a bunch who have had more heartening experiences. I know in the latter case that those concerned have gone to some lengths to be involved in the process of keeping homes on their toes, and perhaps have been fortunate in the homes that were/are available to them.

What I am always concerned about is the notion that 'because I have had a bad/good experience then my experience is the norm'. Each home is an entity unto itself - even in the case of group homes.

I don't subscribe to the notion - in my experience - that care homes make a fortune for their owners. Standards are not bad because money is skimmed off for personal profit - as far as I have seen. I have explored care home costs at Jan's home and there are many areas of cost I had not appreciated were there.

You said

to make the public aware of poor standards and things which allegedly go on " behind closed doors".

Hang on to the 'allegedly' tag. Each case needs to be considered separately and only a period observation from inside can reveal care levels at any home, at a particular time - for with changing staff and residents, what is true today may not be so tomorrow.

We're all going to be watching for the results of anything you can accomplish! Good luck.

 

[lesbac1]

care v profit

Hi brucie,
Thanks for message. I am sure there are some excellent homes out there where the owners (usually but not exclusively private)provide excellent facilities , meals, and care. Unfortunately, many of these same type of homes could not afford to comply with the new building regulations and were snapped up by national chains. I can only speak of my personal experiences both as an ex professional and the home my mother is in but there is a culture of cost effectiveness often at the expense of quality care provision which pervades these homes. They do ake large profits from the misfortune of others to satisfy their greedy shareholders and yet treat the people who work for them with little respect, often paying them the minimum wage and operating on the bare minimum legal staffing levels. I can also assure you that there are some privately run homes where this is so ie. cook doubling up as a carer, care staff cleaning and doing laundry as well as supposedly caring for residents etc.
So, as you mentioned, everybodys' experience is different.
Regards
Les.

 

[Brucie]

I remember getting a stunned silence at the Crawley AS branch when I was doing a Talking Point presentation and, when asked, I said how excellent my wife's home is and it belongs to ..... group of homes.

Crawley has a home from the same group locally and its name is not good.

I raised it with the manager at Jan's home and she said it was a known problem that was being addressed.

 

[lesbac1]

As you said

Hi Brucie,

As you said, everybody has different experiences. Unfortunately for me, and the residents ,concerned mine were predominantly bad despite my very best efforts to improve standards whilst having to keep my job. I think I mentioned, I resigned from five homes after disputes with either private or corporate owners. But good to hear that there are some good homes. Little comfort to my old mum though.
Les.

 

[jc141265]

Hi Lesbac,

I cannot provide you with any information with regards to your research project unfortunately as I have only had experience of Australian care homes (that being where I live).

However, as a regular poster and member of TP for 3yrs I felt I needed to post to apologise to you for the tone this thread took. I cannot understand why, but time and time again when similar threads have been started on here, the result has been the same, a whole lot of angst and tension and surprisingly it has generally been those who have not had negative experiences of homes or who are also moderators who seem most peturbed by the threads???

Each time this has happened I have felt rather nervous posting because, all too often the reply has been an angry one, but nonetheless I am a stubborn mule and will continue to reply as it really concerns me that these threads always end up being a war of words that detract from their original purpose.

So it was thought that you might somehow be sneakily trying to get negative info on homes that don't provide good care...what does it matter...if there is nothing to substantiate such a viewpoint then there no harm done? If people post to you that care homes are wonderful, well then great, that gives you another viewpoint that you never expected, again no harm done, possibly good done. I know there is sometimes the suggestion on here that we don't want to have heaps of posts complaining about care homes as it makes the decision to put one's loved one in a home more guilt ridden, we also don't want to cause needless worry..BUT...sheesh if people have bad stories to tell, I don't understand why they have to deal with the angry posts that ensue afterwards, when if anyone needs support it is people who have experienced such terrible things. If there are some sad confused people who pretend they are researchers just because they want to get people to post confirming their suspicions that care homes can be less than caring, again what does it matter, if the people replying are still getting the opportunity to post about their honest experiences, good or bad??

I know it will probably be said that it isn't so, BUT it is. Constantly I feel that there is an extremely negative and unsupportive response from some very strong members on here when a post such as yours is put on TP. I know these people as much as I can from their other posts and I know that they are caring good souls in all other areas but I am at a loss with regards to what it is about posts that question the quality of care currently being provided that causes such a vehement response.

I know this has happened in the past when it has been suspected that the person posting is only trying to cause another member pain....If the person posting is suspected to be a dodgy fake trying to stir up trouble however, I would have to say that attacking them on a public forum is only going to make their words have more power not less as readers will wonder why the person who they only know as an innocent member is being attacked.

The best tactic if this was the case would be to not reply at all. If others reply innocently, no harm is coming to them, they still get to post on a topic that is important to them, what power does the dodgy fake get? I would like to think that all members on here, know that they could be at any time be talking to a fake (though rarely will someone bother to post too long on here unless they too have genuinely been affected by the experience of dementia - and if that is the case then who are we to say they shouldn't post - if they don't break the rules?)that is the nature of the internet.

However if misguided attempts to protect members from a troublemaker are not the reasons behind such threads...I am not imagining this, and I am not stupid, if I were anyone but the stubborn mule that I am, I would never dare say anything on TP that suggested that I thought care homes needed a lot of improvement for fear that I would no longer have support from other members.

The way this happens again and again with these kinds of threads, seems to be sending out a very clear message to members DO NOT SUPPORT ANYONE ON HERE THAT WANTS TO COMPLAIN ABOUT CARE HOMES. Now I am hoping to god that that message is coming across accidentally. And for anyone who wants to honestly tell me that that is not the intention then I will have you know that that is most definitely how these posts are coming across whether you like it or not, whether you want to believe me or not.

It has become an appalling trend with the same people posting their tut tuts, and the same people coming to the defence of the original poster, and the poor unfortunates in the middle who are just trying to post as per the original theme of the thread. Its time to stop the trend, if a person asks about care home experiences, either post your good or bad experience, or don't post at all, there is no need to delve into the motivations of the posters. You might protest and say yes there is, to ensure members are protected, but any poster on here could be fake, I don't see these protective posts on any other thread type that seems a little odd??

 

[Brucie]

All just my views as a member, below:

seems to be sending out a very clear message to members DO NOT SUPPORT ANYONE ON HERE THAT WANTS TO COMPLAIN ABOUT CARE HOMES.

not so, Nat, but then everyone reads what they will from any thread, yourself and myself included.

I think the key thing here was a concern from some members, me too.

To encapsulate my concern, it was about Les' words that his was a possible research project, linked to AS.

The reason why full time academics, or professional research bodies, are usually the ones to do research is that they have no axe to grind. In theory, the research will be supervised, peer reviewed even.

By Les' admission he has "resigned from five homes after disputes with either private or corporate owners". That was for a reason, clearly a most commendable one, but it does not pre-dispose me to think that his 'research' would be objective for homes generally.

I'm quite likely to be wrong.

That is not to impugn his motives, it is simply that his 'research' might 'not be research as we know it, Jim'.

Had he said he wanted to do something more journalistic, getting stories of good and bad care to judge how to improve things, then I think nobody would have blinked.

Genuine stories of bad - and good - care are always welcome, and reporting of bad care is of course necessary. For my part I feel that often a tabloid hearsay form of talking about bad care - when there has been no wide experience gained - does nobody any good. There are lots of people happy to leap on bandwagons because they seem to be good causes.

I'm talking of the population generally here.

 

[connie]

Perhaps you would like to clarify that Nat:

surprisingly it has generally been those who have not had negative experiences of homes or who are also moderators who seem most peturbed by the threads???

As I was one of the two positive posts, and whilst posting as an ordinary member I am also a moderator, I fail to see just what you are implying?

The exeption I took on the thread was in direct response to a post of Tenderface (Karen), for which she apologised..