1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

No help from Social Services

Discussion in 'ARCHIVE FORUM: Support discussions' started by Amanda1954, Mar 5, 2008.

  1. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    #1 Amanda1954, Mar 5, 2008
    Last edited: Mar 5, 2008
    I'm cheesed off today because I've just got back from my mum's where I found she'd received a 'Needs Profile' following a visit from Social Services last week.

    The reason I'd rung and asked them to come was because my mum isn't eating properly. She's always been small and slim and her usual weight is 7 1/2 stone. She's now under 7 stone and I'm worried about her. I know she's not shopping/preparing/cooking/eating properly and I wanted to see if they had any suggestions. The man who came was really nice and we got on well. The thing is my mum comes across as very capable and, like many AD patients I guess, gives an impression that she's coping really well thank you and doesn't need any help. Whereas the reality is that she's skipping meals, or preparing something and can't face it, or eating just a piece of fish and some peas and no potatoes. And whilst the portion size would delight my Weight Watchers leader, they are not enough for someone trying to put on weight. The SS man suggested Mobile Meals and both my mum and I thought that they would be a good idea a couple of times a week as she'd be more likely to eat it all when she hasn't prepared it, and I'd know she's getting a better balanced meal. I'm quite prepared to fill in any gaps myself, taking food round (although I've been doing that for a while and I know they are not always eaten!)or taking her out to eat.

    So, with all that in mind, I was really upset to find that SS are not going to provide the meals because "Mrs P does not meet the eligibility criteria as she does not have a difficulty in preparing hot meals". It's as if they've only taken in account what she said herself (I'm capable etc etc) and ignored my input altogether.

    I'm assuming that I can appeal against this decision but don't know if it will get me anywhere.

    Sorry to go on about it but I've had a right morning with all this. On the same visit I found she'd taken out travel insurance but didn't tell them about the AD (she said "they don't really need to know do they?"!); in addition she'd arranged an appointment with a company to supply her with a hearing aid (she already has one on order from the NHS and it's being fitted next week); plus various other things that reared their heads when I openend the post. It's all very well having an EPA and dealing with mum's affairs but she keeps undoing all the work I've done setting up direct debits etc, and keeps making all these other arrangments. I seem to spend half my life cancelling appointments/contracts etc. When I tell her that I am taking care of everything now she says the same thing every time "Amanda, you have to understand that I'm used to doing everything myself". I sometimes think I'll scream if she says it again and I have to bite my tongue because I know it's not her fault. I want to put up posters round the house "Don't do anything without asking Amanda first". I know it's important for her to feel independent and in control for as long as she can, and I make sure that I let her make as many decisions for herself as possible so it's really frustrating when she 'takes over' and it ends up with me having to bail her out.

    Thanks for listening (if anybody did!) and sorry for the rant.
     
  2. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    (((((hugs))))))))

    This is the place to rant as we all understand.

    I despair at times of getting outside agencies to understand that early AZ is very debilitating and whilst a patient presents well for 1/2 hour over the course of a weekend stay you would see something far different.

    We had great difficulty getting Mum's GP to believe us as Mum presented so well for her 10 minute appointments in the early days. My MIL after a quick visit told me there was nothing wrong with MUm.

    Like you we had to fight to get her better support as she deterirated and stopped cooking and eating and unfortunately we only managed to convince everyone the day before she ended up in hospital. If we had been taken more seriously 4 months earlier Mum might have had nurses in supervising medication, regular checks and Meals on wheels, all of which would have gone a long way to keeping her fitter, making sure that she was well and preventing emergency suregery due to a burst ulcer!

    I quite understand your rant. Complain and fight it!

    Love

    Mameeskye
     
  3. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Amanda

    Mum was similar to yours. She told any Doctor, social worker, or nurse that I was worrying unnecessarily as she always got her meat from the butcher and cooked herself, and then spent the rest of the day knitting, sewing and entertaining friends. All untrue but seemingly believed by the professionals...at least so they did not have to provide uncharged for help.

    I regret I was weak and arranged my own care package for mum, as SS had told me mum would have to pay for anything they arranged anyway. A lady came in at lunch time and microwaved a readymeal. (Not easy. The lady had to eat something at the same time otherwise mum would not eat).

    I also told everybody to send all correspondence to my address, and I made sure that there was no cheque book or bank statement at mum’s house to stop anyone writing cheques or setting up direct debits. Sometimes I posted information on to mum in brown envelopes after removing any reference that could be dangerous or upsetting. For example I removed bank account numbers. Also I produced my own Memory Clinic appointment cards so that mum did not see the words “Mental Health Clinic” as part of the address on the NHS appointment card. Thank goodness for computers.

    Keep trying but don’t blame yourself if things take longer than you expect.

    Best wishes

    Clive
     
  4. 117katie

    117katie Guest

    Dear Amanda

    I tried to reply to your post, but it all went AWOL before being accepted by the AlzSoc website, even though no rude words used, so I have sent you a PM, which hopefully will still be there when you get to see it. All being moderately well, it should still be there.

    Huge sympathy with your posts of today; and know exactly how you feel.

    So, having spent a fair while trying to write to you, I will do the same again tomorrow.

    Meanwhile, chin up!

    Appeal against the decision. Shall send another message tomorrow which hopefully will reach you. Sorry, can't repeat my message today for reasons beyond my control, but I will do so tomorrow.

    Take care,
    Love
    Katie
     
  5. 117katie

    117katie Guest

    Dear Amanda

    Sounds so familiar! As does the experience of BOTH Mameeskye and Clive. And the performance of a good actor will often hoodwink the so-called professionals.

    I always found that for me the one thing to remember was that : the professionals don't always hear or listen to whatever you may say to them. I tried to make sure any "serious issues" were always in writing from me to them - and kept a copy, all fully dated. Made an enormous difference.

    Appeal against that decision ... and ask to see a full copy of their so-called 'care needs assessment', which they should - in theory - provide to your Mum anyway! Huh! They often decide not to do that, of course. Push push push. And ask why they chose not to provide copy to your Mum. Probably because they thought she has AD and may not understand it or may be worried by it or ...... EXACTLY. SHE HAS PROBLEMS THAT NEED TO BE ADDRESSED.

    Can you talk to your Mum's GP - even though the GP will tell you that "patient confidentiality" prevents her/him from telling you anything. But it does not prevent them from LISTENING to you!! So worth the ten minutes they may allow you. And put it in writing to GP too. Very useful in our case. And we had a good GP who soon realised that if she didn't LISTEN AND DO THE NECESSARY, then she would at some point in the future be required to explain why she DIDN'T LISTEN. But she did listen, and she heard what we were saying and acted accordingly. Thank goodness. Hurdle One over!

    Especially using the words: SHE IS DIABETIC, SHE HAS ANGINA, SHE HAS DEMENTIA, SHE LIVES ALONE, SHE IS 83 YEARS OF AGE, SO IF SHE IS NOT FED PROPERLY, AND IF MEDICATIONS ARE NOT GIVEN APPROPRIATELY, THEN YOU WILL HAVE TO BE ABLE TO EXPLAIN THE CONSEQUENCES.

    Meals on wheels were cancelled by the social worker in our case because "well, she says she will lose the skill if she doesn't cook any more", even though she had gone from nearly 9 stone to just over 7 stone in less than two months, only for SW to have to re-instate them a week later because as SW said "I really don't think she's actually remembering to cook or to eat". SURPRISE! SURPRISE! But then the SW ordered "soft meals" which meant pureed mush - for someone who had all her own teeth! But we got that one sorted eventually.

    I think Clive's idea of arranging your own care package and/or someone coming in "for lunch" is a great idea. Wouldn't have worked in our case, because of the inability to 'supervise' it.

    The cost of the Meals on wheels was an issue for my Aunt, because "well, why should I pay for it when I can cook it myself". If only! If only! So I told her it was all "free for old girls like you" which she accepted happily. Bills all sent to me - apart from once, which caused massive disruption to the system we had so carefully set in place. But after that little hiccup, no problems - suddenly it became "well, if it's free for old girls like me, then why should I bother cooking"!!! I suppose you could call it "gentle persuasion". Worked for us, but can't guarantee it will work for you.

    Like Clive, I also arranged for all bills to be sent to me. I spoke to each and every utility company and asked what they would require, and all they asked was a letter of explanation, but signed by the person-in-question. And, I admit, I did once or twice just say: SIGN HERE.
    "Why?" asked she.
    "Because I am going to take a lot of the hassle out of your life", said I.
    "But I don't have any hassle", said she.
    "You will if you don't sign here", said I.
    But we always had that kind of cheeky relationship, so it was not a problem. It always always happened with a smile and a laugh.

    And most important of all: it took an enormous amount of stress away from her life. And from my life, which I consider important too.

    I think the "information posters" are a great idea. We made them funny, with lots of bunches of flowers and bunny rabbits and cats and family images .... and so on; bought a cheap encapsulating machine, so they looked nice and professional. Again, accepted with no problem! Worked with lists of "people you might like to telephone every now and then" - - - which she did, with great skill!! "If anything arrives in the post which Amanda might like to do for me ... then phone Amanda". And she enjoyed it much along the line, of course. Up to you to work out your own, but worked very very well in our situation.

    Suggest also that you might consider becoming a Third-Party to your Mum's bank current account, and also, if you can, her Appointee for Pension Affairs. Very useful, as it allows you then to claim on her behalf and to manage on her behalf, any benefits to which she may be entitled.

    Well, you said you were apologising for a rant. Perhaps I ought to apologise for my rant too!!!!

    Take it gently; have a nice long soak in a nice lavender-scented bath; sleep gently too. Wake refreshed ... HOPEFULLY.

    My very best wishes to you,

    Love
    Katie

    PS. Strangely enough, it works suddenly!!!
     
  6. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    When SS say she is not entitled.. they mean.. they won't fund!

    Couldn't she pay for meals to be delivered?

    Or.. if she can use the microwave, can't you prepare her a balanced meal and let her microwave it?

    My Dad can't use the microwave, but I do leave him a cold packed lunch.

    Beverley x
     
  7. kazlou

    kazlou Registered User

    Feb 3, 2006
    75
    Surrey
    Hi Amanda,

    We had the same problem with Social services, I did ask if they had any training in dementia care to which they replied some of us have. We now have in place carers to come in 3 times a day to ensure Mum has breakfast & medication Lunch and then again for tea and medication, this seems to work quite well although it took a while before Mum gave up boiling fish cakes and putting bacon in the toaster. They stay and watch Mum eat (or it would end up wrapped in tissue and put in the bin or hidden away somewhere, They come in 5 days a week and we pick up at the weekends. This seems to be working o.k.
     
  8. forgetmenot

    forgetmenot Registered User

    Jul 6, 2007
    25
    London
    My mother went down to 6 stone before they did anything and now she is not much more than 5 stone. Keep at them - provide her with something she likes - it doesn't matter what she eats at the end of the day as long as she does eat
     
  9. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    Thank you everyone for your very supportive and informative replies. I shall be planning my appeal now and will let you know how I get on.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.