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.

  1. Jayne001

    Jayne001 Registered User

    Jul 4, 2007
    6
    Wirral
    Hello everyone,

    I have just joined today as I'm feeling lost and am not sure where to turn. My mum has Alzheimers and over the past 6 months it has accelerated and now I feel we really need help but don't know what to do or who to ask or where to turn. I have been with Mum today to the "memory clinic" (first time for me). Normally Dad takes her but he is finding it very hard. I was very shocked and upset how the process went. After her memory test we were taken to see the doctor who asked her a series of questions like do you do the housework, cooking, cleaning, washing and shopping to which her answer was yes to all. The reality is of course no, she can't even make a cup of tea unassisted. I sat with my mouth wide open while the doctor asked her if she was happy with her medication and did she have any questions! After mum put her mind at ease the doctor said the next appointment is 6 months and bye! I took mum to the waiting room and returned to speak to the doctor alone and explain the reality of it all. So here I am, she told me she will send a letter to recommed 'respite care' and a letter to Social Services. Can anyone please give me any advice as to what we can expect now?

    I am so shocked how a "memory clinic" obviously named so for a reason would be that way? Surely my mum is not the first person with Alzheimers to not know she isn't the one who does all around the house, she thinks she does because she can only remember a time when it was her that did it.

    I'm so scared and sad for us all and what the future has in store. All I know is it's going to get worse and I don't know how my Dad or us will cope.

    Thank you,

    Jayne
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Jayne

    Welcome to TP. I'm not surprised you're scared, it's a terrifying illness at the best of times, but when you are given no information it must be ten times worse.

    There are lots of things for you to do to get started. The first is to se if there is a local branch of Alzheimer's Society. You will find them a great support, and source of local information. They can contact SS and arrange for assessments for your mum and dad.

    Secondly, Princess Royal Trust for Carers. Again, they will provide local support, and can also help with assessments.

    If you can't find local branches for these, get on to SS yourself and demand assessments. Don't wait for the doctor. I have to say, though, that you'll get faster results if either AS or PRTC contact them on your behalf.

    That should be enough to be going on with! There is help out there, you just have to know who to ask!

    The best support of all, you have already found. TP is a huge source of advice and support, so carry on posting, whenever you like.

    And good luck!

    Love,
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Welcome to TP

    Sounds like it was a bit of shock , for you Jayne


    that sounds around right , your just left to get on with it .

    We did have a dementia nurse , come around for about 3 weeks that put me in touch with a social worker , then social worker put me in touch with my local AZ group

    This is a good link http://www.alzheimers.org.uk/After_diagnosis/index.htm


    Can't really answer that , because every one different , hopefully the medication works for your mother , slowing down the of the disease .
     
  4. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales
    Hello Jayne, have just read your note and my heart goes out to you.

    I went through exactly the same early last year with my wife D and was devastated. Went into the toilet at home and cried for the first time for a very long time and I am an old man.

    But over the coming months had the most marvellous help from neighbours, we have no children, and as people got to know the situation help came. Then was linked to the Alzheimers Society's local branch and they have been so understanding and helpful.

    Jayne, the pain is there but with the help others are able to give, we can go on and care for our loved ones.

    Can only wish you well, we all know how you feel - Cliff
     
  5. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Community Mental Health Nurse

    Hi Jayne

    What an awful experience for you both - sadly seems to be a case of a professional ticking all their boxes & believing that by doing so that they have therefore "done their bit" (makes me furious!!!!)

    Have you been allocated a Community Mental Health Nurse (previously referred to as CPN's - Community Psychiatric Nurse.) Since Dad was first diagnosed 14 years ago - our CPN has been of tremendous support to both Mum & Dad (she recognises that that they are a "package" and helps the carer as well as the sufferer. She has also been a mine of information. She visits Mum & Dad at home usually on a monthly basis - but more frequently when we are experiencing difficult times (as we have done recently) and is always available on the phone if we need to contact her.

    I think I'm right in saying that she was introduced via Mum & Dad's GP - but it's so long ago now and in those early stages I was not as involved with Dad's care package as I am now.

    I'm sure some-one on here will be able to provide the details of getting a CPN allocated to your Mum - I would say it's definitely worth doing asap.

    Take care

    Kind Regards

    Gill
     
  6. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    To Jayne

    Hello love,

    I am no expert, I have known for 18 months that my mum was "not right", I even penned a letter to her GP that long ago and never sent it cos I thought I was over-reacting to a forgetful old lady. Wish I had done so at the time.

    First she thought my dad had come back from the dead, then her mam and dad, but none of that was a major problem. The first turning point was when she called the doctor out to my dad, and the doc turned up to find - no dad! The next turning point was 3 months on when a passer-by saw an old lady standing at the bus stop at 12.45 a.m. and reported her to the police. The police never found her, but I know it was her because the same night she telephoned friends at 1 a.m. and 1.30 a.m., and they telephoned me to complain! The police got the wheels moving cos they dared not ignore it, so it was largely taken out of my hands. But I had suspected for a while that she was going out at night but had no proof.

    I don't know how you get things moving unless you have a near-disaster as we did, but all I can say is keep pressing. Don't give up. Pester the Community Health Team (ours is called "Psychiatry for Older People") and anyone else who will listen to you.

    Now she is in a secure hospital unit and I have gone to cancel the papers, the milk, pay the window cleaner etc. everyone has told me they have been worried about her for months! So ask your mum's neighbours and her friends what they think, and keep pressing!

    Good luck, don't leave it till she is standing at a bus stop at 12.45 a.m. and I am thankful that whoever saw her was not a crank but a responsible citizen.

    Margaret
     
  7. LisaE

    LisaE Registered User

    Jul 2, 2007
    5
    post-code lottery?

    Hi Jayne

    I have just read your thread and like you I wrote for the first time yesterday and I am as deperate, fearful and emotional about it all. I am trying to find information and coping strategies. The last thread from Gill, who is from Southampton Hampshire, which is where Mum came from had a lovely lady (Elderly Mental Health team) who really helped and came to see Mum twice a month. She was a life line.

    I have now moved Mum to Surrey Heath and when I contacted CPN I was told that if Mum was diagnosed up here then they would assess her needs, however, this CPN was... 'not a chatting service'! I was flabbergasted. I tought mum would get the same level of care no matter where she lived.. but perhaps it is a post-code lottery??

    I do not know what help is out there, however, Mum has her memory clinic appointment in August, so now I know what to expect. Thank you. Better get the right questions together.

    L x :(
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I think you're right, Lisa. The support available varies from area to area.

    We have never had a CPN, and when I asked about it, I was told they were only assigned in cases of challenging behaviour.

    I can see the sense of this, we don't really need regular visits, although it would be nice to have someone to call on in emergency.

    I'll be interested to read of the experience of people in other areas.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,722
    Kent
    Dear Jayne,

    I`d just like to welcome you to TP.

    I can`t add to the excellent siggestions you have been given so far, but hope you get the help and support you need from this forum.

    I`m so sorry you had to go through such a distressing experience with such an insensitive doctor, but glad you have found TP. We all understand what you`re going through and how devastating a diagnosis of Alzheimers is.

    Take care

    Love xx
     
  11. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales
    Replying to Hazel but still very much thinking of Jayne:

    after my first shattering experience with the locum doctor when Dee (my wife) was first diagnosed at the Memory clinic, I was linked to a Mental Health Nurse.

    Have called her several times. She has always been there and answered my calls with sensible advice and she carries out the 3 monthly examination.

    She is also present at the day-centre at the clinic and keeps an eye on Dee the whole time each week and has rung me with comments. Also our GP, a young lady doctor is a tower of strength and support.

    Can only speak for this part of North Wales - we eventually saw the real consultant and all was well - it's good and it works.

    Jayne, hope you feel better today - Cliff
     
  12. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Jayne, I would also like to welcome you to TP. I am sure you'll find this forum very supportive and a wealth of information, I don't live in the UK,so, I know nothing of the system there.I however did learn alot about different packages available through the local Dementia support group. Maybe you also could find out, if a support group was available to you. I am sorry that you to have to go through this miserable journey. I wish you all the very best. Taffy.
     
  13. Hi Jane,

    I went to the Memory Clinic with my Mum when she was 46 she's now 52 and the doctor seemed the same he was showing her pictures and she couldnt even name them and asking her questions like her date of birth which she couldnt reply. Then after the session he says yes its quite clear she's confused and i can put it down to depression. And i still get really angry about it now as i could of slapped him and said wake up and smell the coffee. i think more needs doing in these clinics, As ive included in my post on here i would like to know how much funding goes into this illness.


    Hope you're ok

    Mark
     

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