• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Distressed today.


Registered User
Mar 7, 2004
I am posting below a copy of a letter I HAVE SENT TODAY TO sOCIAL sERVICES.

Alison Ansell, Mental Health Team, Clacton.

I am a carer, but today I have been made to feel a second class citizen. My crime, I am a carer for someone with Alzheimer’s Disease .- We appreciate that Lionel has sufficient funding for his own needs, so I was assessed in my own right as a carer.

First mistake, carers have no rights. We have now been assessed as needing extra help for Lionels personal needs, but for Connie, A MANICURE ONCE A MONTH.
Sorry, but the day I need Social Services to provide me with a manicure I BOW OUT OF THE SYSTEM.

Lovely girl arrived tonight to help me put Lionel to bed, BUT WE HAVE TO PAY FOR THIS. Prearranged time, no flexibility..

I am utterly disgusted that this is how Social Services treat carers, I had hoped I was worth more.

I am posting this letter on the Alzheimer’s website, there I shall , at least, receive recognition of my own self-worth.

Yours sincerly


Registered User
Mar 13, 2006
a manicure once a month!!!
im speechless what an insult,

im so sorry your distressed:( id like to say i think you and all carers out there are worth theyre wait in gold.
big {{{hug}}}


Registered User
Jan 4, 2006
Hiya Connie,
Were you really surprised? Doesn't this just confirm what you knew? I am sorry it has made you feel bad, you have enough on your plate as it is.
I had hoped I was worth more
You know that you are worth more, to Lionel, your family and not least to us on here. The thing is if SS started making awards to carers, the coffers would be empty. Ths system cannot afford to acknowledge your worth, just as it cannot afford to acknowledge that AD sufferers should have funded care.
Connie, let it go, don't let it eat you up.
Sending a Hug.
Love from


Registered User
May 2, 2006
social services

I am so sorry for the distress you are going through. You have enough to contend with. Social services in my opinion are only geared up to help drug addicts and alcoholics they dont have time for anyone else let alone some-one who is saving them money by doing the careing themselves. Dont let them get to you.

Nutty Nan

Registered User
Nov 2, 2003
Well done for putting pen to paper, Connie - I hope it has made you feel just a little bit better.
I am sure you don't really need SS or anyone else to confirm what a priceless job you are doing in caring for Lionel. Sadly, you may have to wait until you get your reward in Heaven .......
Please let us know if/when you get a reply!

Chin up, tomorrow just may be a little better.


Registered User
Apr 10, 2006
Hi Connie

Just to let you know that i would not expect anything better from SS.
You do what you do for love and because your a very caring person, in my book that makes you very special.

Don't beat yourself up over a system that knows no better.

Take care


Registered User
Oct 15, 2005

Typical SS..! :mad: So sorry they've 'got to you' Connie, it's something you don't need right now.:( You do an amazing job with love and affection for your darling Lionel.
Well done though for sending the letter, I sometimes think we are too slow to complain but it's all such an effort when we have many more important tasks to hand (like saving SS money....:mad: )
Take care and I hope tomorrow's a better day for you.


Registered User
Jan 30, 2006
hi connie,

keep that chin up gal......
we all, (TP family) know what a "fantastic worth" you really are, you`ve got great spirit....

"don`t let em grind ya down" ;)



Registered User
Jun 3, 2005
You wouldn't believe it if you read it in the papers ...

Connie, if the manicurist did a really good job, you could scratch someone's eyes out! :D

Things like this are so exasperating; talk about misguided priorities.


Tender Face

Account Closed
Mar 14, 2006
NW England
connie said:
I am posting this letter on the Alzheimer’s website, there I shall , at least, receive recognition of my own self-worth.
Connie, it's not just own self-worth but your SELFLESS-worth which is priceless...

Just sending a hug, Love Karen, x


Registered User
Sep 26, 2005
Dear Connie,
The sad thing is that help from statutory bodies comes in little boxes. If you tick the right box you will get that little cube of help. Unfortunately its a mass produced solution - one size that fits very few. I guess you don't need (physical) help on a regular basis with the shopping or laundry or making beds or the other 1001 household tasks. But there is no provision for the occasions when you are so dog tired you want to howl, no one on the end of the phone when you are awake in the early hours of the morning. There is very little responsive help - its got to be planned so far in advance to organise the staffing it fails to meet the need.

Some of the things I've learnt whilst looking after my hubby is to appreciate the smallest offer from friends and neighbours and take them up on it. The timing is likely to be far more flexible.

I hope your letter makes THEM reconsider what help and support they need to be offering. Hope you receive some more suitable support from another source.

Is it any wonder that NICE can deem the AD drugs as being not cost effective when home care costs the Government nothing in your case and all the other scenarios of family providing care.

Sorry don't mean to go rambling on - I'm so angry on your behalf - but sadly not surprised. Just keep going the best you can.

love Finnian


Registered User
Apr 26, 2006
worth more


LOVE Bel x


Registered User
Mar 7, 2004
To add to my woes today has not been a good one.

Carer came 8.00am and we got Lionel ready for the day centre, but had to abandon it at 9.30 and try to put him back to bed. This took us to just after 10.00, so have to pay carer for extra time.

Lionel slept until 1.30 and I managed to get him up myself, and sat with him all afternoon (it was supposed to be my day off).

He was quite happy and awake, watching Frost on T.V (he likes that) when the evening carer arrived to put him to bed. Well that was not going to work, so I had to send her away. (Evening carers were organised by SS, although we pay the full cost.

Spoke to SS earlier today, and asked them to cancel their carers, I must have flexibility.

Thank you all for your kind words of encouragement, and I shall carry on caring in my own way.


Registered User
Feb 24, 2006
I'm sorry to hear that you are having such a hard time Connie and that you didn't get your much needed break today. Will you try to put something in place to replace the SS carers? I know when my mum was still at home with my dad it was very difficult. The carers would only come at certain times which weren't always convenient and unless we were there at the time we couldn't be sure of what they had done. Obviously if we were there then it defeated the object of paying for someone to come :eek:

I hope things get easier for you and Lionel. You deserve a break.


Registered User
Apr 20, 2006
Can you face writing another letter?

Hi Connie. I am sorry that your experience of Social Services has been so poor. I feel a bit embarrassed to have a social work background. I got out of mainstream work before it got like this. I work for a charity, and whilst money is very tight there too, we treat people well. Can you face writing a letter to the Director of Adult Services, and the councillor who chairs the Adult Service? Copy the same one. I think it worth telling them why the service was inappropriate and asking if they plan to have specialist teams to meet the people in the community who have dementia and their carers. Your very bad experience highlights why flexibility is needed for Lionel and for you as a carer. The manicure fiasco is dreadful. They are not meeting your needs at all are they? And they need telling this and why. Yes money is always an issue, but you contribute to the system in all sorts of ways and have already saved them tons of money with your unpaid caring role, and paying your dues for years. So have your say about the social worker and make sure it gets heard. If you make it an official complaint they have to investigate all you say and reply in certain timescales, and you will get feedback of some sort. It won't just go in the bin at least. Can your local AD group advocate for you too and take up the issues for you do you think? Big hugs to you, you must have felt so alone in the role of carer whilst this happened. xxx


Registered User
Oct 9, 2003
Birmingham Hades
good advice from Sophia.
You know that I have been through all the official complaint procedure,and won!!
Please do something about it,you know I am here for you if you need help.


Registered User
Mar 7, 2004

Well I had a phone call today from the recipient of the letter, asking what else they can do to help.

Several things were suggested, and rejected, but I have to acknowledge their understanding of how I am feeling. O.K. so we shall start again through the system, and maybe their hands are tied, but they are allowing me to "tell it like it is"

Will let you know if things improve. One good thing, Lionel is having a good day, a 100% improvement on Friday and Monday. Fingers crossed.


Registered User
Mar 7, 2004
Oh boy, did I speak too soon.

Lionel did not manage the chair in the bedroom at 9.00pm, ended up sitting on the floor.
Asked a neighbour to help me get him up, that was alright. Unfortunately he could not then comprehend what I was asking of him, so I have struggled for the last 45mins to get him into bed. Ah well, another day tomorrow. Goodnight.


Registered User
Jan 4, 2006
Well Connie,
Earlier on I tried to send a post saying sometimes just knowing that we are being heard is sufficient, even if there is nothing that can be done. Then I was going to say 'Pleased that your behaving and Lionel can have a good day'. Then something went strange with my connection and I couldn't connect to a server. And now you've had a difficult end to the day, but remember the '100%improvement' that the rest of it had been!!
Love Amy