hi new user would like advice

Discussion in 'ARCHIVE FORUM: Support discussions' started by TurquoiseAnkh, Nov 2, 2006.

  1. TurquoiseAnkh

    TurquoiseAnkh Registered User

    Nov 2, 2006
    #1 TurquoiseAnkh, Nov 2, 2006
    Last edited: Nov 2, 2006
    Hi everyone
    I am a new member and would like to ask for some help or advice or anything really. I'm 20 and my 74 year old nan has Alzheimer's.

    My nan was diagnosed with Alzheimer's by a memory clinic about 6 months ago and the doctor said she was mild-moderate so i suppose that was stage 3 or 4. I think my dad tried to tell her but she just thought he was getting on at her, as she was experiencing delusions and was hearing voices and the like. She just wouldn't listen, and was adamant she was perfectly fine and what made it worse was that her GP told her there was nothing wrong with her, and memory lapses were just a part of being old!!!! Even though a memory clinic has diagnosed her!

    Since then she has become increasingly aggressive not only towards family members but to people she doesn't know. She wanders a lot and leaves her house unlocked at night. She has forgotten how to use household appliances and one time left the stove on with a teatowel on top and nearly burned the house down, but she was certain it wasn't her and that my dad had sneaked in and done it on purpose. Over the past six weeks or so she seems to have gone downhill rather fast. She is not washing or eating properly, and says she has trouble swallowing. She has lost the capacity to understand a lot of what you say to her and her speech doesn't make a lot of sense. But she still inists she's fine. She now appears to be in late stage 6 or early stage 7 as this week my dad has found out that she is having problems toileting "number 2's" properly and so immediately rang social services for advice.

    We were horrified to find out that unless she gives consent she cannot go into a care home or even have daycare. I would understand this if she was in the early stages as she would understand what was going on, but how can they expect her to give consent when she doesn't really know understand what is going on, and thinks she is fine. She lives alone, and my parents both work full time. They can't afford to give up work to look after her as they are supporting my sister and I through university. My dad visits her 5 or 6 times a week but he cannot stay for long as he works long hours. We feel that she really needs 24hr care. We weren't expecting her to deteriorate so quickly and are quite shocked really.

    We are at a loss at what to do as we know we cannot provide her with the care she needs, and social services refuse to help without her consent which she definitely will not give, and is basically incapable of doing so rationally.

    Any advice would be much appreciated. Thanks.
  2. Helena

    Helena Registered User

    May 24, 2006
    You need to contact the memory clinic and insist on a urgent CPN visit

    Your nan needs sectioning and that she cant refuse

    Her GP s should be reported to the GMC for their lack of diagnosis too
  3. dondon

    dondon Registered User

    Nov 1, 2006
    i really didnt know there were stages my mum hasnt been told about the stages but i really do think it is silly to need consent from a person whom cannot understand we are facing this right now to but the docs have said if my dad doesnt go in voluntarily they will use force to make him go i know its not much help but like helena said there is something wrong there contact the clinic and let them know hope you get help

  4. TurquoiseAnkh

    TurquoiseAnkh Registered User

    Nov 2, 2006

    this is where i found the stages if it helps. they probably aren't perfect but they are a rough guide. I don't know what we're going t do but we've got to do something and soon. I think my nan really needs to go to a care home.
  5. Áine

    Áine Registered User

    It's a difficult one turquoiseankh. Your nan is obviously causing a lot of worry. My dad also deteriorated very rapidly and there was a very anxious period between him not really being able to take care of himself, and it not being deemed appropriate that someone should take over his care against his wishes.

    There's a continuum between taking care of people, enforcing that care if need be ........ and protecting people's rights to chose. At the extremes it's fairly clear cut ........ but there's some very grey areas in the middle. Who has the right to decide whether someone is capable of making a decision about their care? Social services are often stuck in the middle of this dilemma, and are very often dammed if they don't intervene and dammed if they do.

    I suggest you (and/or your parents) get in touch with nan's GP and make sure s/he is aware of how the situation has got worse and what (in detail) your concerns are. I don't know what the story behind the GP telling your nan there was nothing wrong with her is ......... but it could have been a benign attempt to calm her anxieties. I have to admit to having told my dad a fair number of fibs over the months. It can be a kind of compassionate economy of the truth. The GP is often the key to services, and usually a good place to start.

    best wishes (let us know how you get on)
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Sorry, Áine, but when it gets to the point someone has potentially burnt their house down and/or is known to have left it unsafe - not to mention 'wandering' and putting themselves in increasingly vulnerable situations, I don't think it's a grey area. There is 'protecting people's right to chose' - and simply protecting people who, for whatever reason, don't have the ability to do it for themselves and their own personal well-being....

    Turquoiseankh, Social Services have Emergency/Duty Teams available 24/7 - if 'nan' is wandering in the middle of the night there's a whole host of things to be concerned about.... (and I personally would be by-passing Social Services for Emergency Services on the next occasion any serious incident happens - sadly that's a sure way to get SSD moving).

    My 'guess' is that the GP is being as 'non-alarmist' as he/she can be - but absolutley agree with Aine's advice that GP is best starting point for general help... if immediate concerns can be managed... or even call his 'out-of-hours' number.......

    Very importantly, it's wonderful that you are so worried about 'nan' and appreciate what your own parents are doing for you ..... you are so young to be taking this on board.... what your nan would want most is for you to do well with your studies... can you show this site to your parents?

    Keep posting - lots of people here to listen and help ... and good luck with those studies.....!!!!

    Love, Karen (TF), x
  7. TurquoiseAnkh

    TurquoiseAnkh Registered User

    Nov 2, 2006
    thanks guys for your help
    there's a nurse coming to see my nan on thursday, so we'll have to wait and see what happens. Hopefully they will see she needs help, even if its only a short visit every day.
    Will keep you posted
    thanks again xx
  8. TurquoiseAnkh

    TurquoiseAnkh Registered User

    Nov 2, 2006
    Hi guys
    A nurse came to assess my nan the other week, after everything she had been doing. But get this, my dad told my nan she'd be having a visitor and then when the nurse turned up my nan had been to the hairdressers and tidied herself up, and was talking almost normally to the nurse. Consequently the nurse decided that there was nothing wrong with her, and that she doesn't have Alzheimer's and that she's just a normal old lady!!! even though she's been diagnosed!!!

    But every time my dad goes to her she is not really lucid. She got lost yesterday and ended up being taken to the police station for the 5th or 6th time, she invites random people she meets in the street into her house, and asks them if they are her son (my dad). I have been reading up and she definitely has virtually every symptom of Alzheimer's type dementia, but now we can't get anyone to realise.

    Does anyone else have this problem with relatives acting more normally in front of social services, or problems getting social services to realise there is a problem. If so any help wpuld be much appreciated.

  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I'm confused myself here!

    If she has been diagnosed, who made the diagnosis?

    Nurses are not qualified to decide whether a person has any form of dementia - neither, in practice are most GPs. Nor, in reality, even with full descriptions of symptoms etc, are you. Only a specialist can make a diagnosis, based on a variety of tests.
    It is fairly normal for the person to summon all their faculties for short periods when they feel they must impress. We all do it anyway, when attending interviews for jobs, etc so why would someone with dementia be any different?

    If I were you, I'd be keeping a daily diary of things that seem strange to you, words, actions, etc. You say
    people may take that as normal exaggeration - but if you were able to say that she had been lost on the 5th, 12th, 15th, 21st and 24th of the month and each time ended up at the police station... well, people take that more seriously.
  10. TurquoiseAnkh

    TurquoiseAnkh Registered User

    Nov 2, 2006
    Thanks for that

    she was diagnosed by a memory clinic and we thought it was a cpn nurse from social services coming to see her, to assess her for the help she needs. And she really does need it.
    She hasnt been back to the memory clinic though because she refuses to go.

    We didnt keep a diary as such but we did make a list of the things she does to show the nurse but she didn't really seem interested. I think she thought because my nan was acting quite normal that we were exaggerating and just trying to palm an elderly lady onto social services, whcih is just not the case.

    Should we contact social services again and insist she has Alzheimers and that they visit her again because we really need help with my nan.

  11. thinkpink

    thinkpink Registered User

    Nov 14, 2006
    I don't really have any advice but just wanted you to know you are not alone. My nannie seems to be very much like yours although she does have my grandad with her. They are both 90. She always acts fine in front of visitors etc - up, dressed and pretty much making sense. A carer is going to see her for the first time today (long story!) and I just know she will be looking fine and acting OK.

    However if we pop by she is never dressed, totally confused and can be quite nasty. :( She knows there is something wrong with her, but has never been officially diagnosed or treated. Grandad basically keeps her locked up in the house and refuses to face up to what is going on. My mum has contact Social Services but without his consent nothing is being done to help her.

    Keeping a diary is a good idea, will mention that to my mum.

    Good luck x
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I think there has either been a diagnosis - and that would be made neither by a nurse, nor by a memory clinic - or there has not been a disgnosis.

    Generally a GP will refer a patient to a specialist, who will use a range of techniques to make a diagnosis, one of which is to make a memory test themselves, or to refer the patient to a memory clinic. The specialist will then come to a conclusion.

    If she has been diagnosed by a specialist, then resources such as the nurse should then become available. A nurse cannot reverse a diagnosis, only report on what they observe.

    If you have problems, then contact the original specialist and/or her GP.
  13. May

    May Registered User

    Oct 15, 2005
    I would go with what Bruce said , contact her GP and ask them to contact the original clinic that made the 'diagnosis', or if you have the details of the clinic contact them direct and explain the problem. I'm afraid it's not always clear cut even after a diagnosis, patients do 'fall thro the net', in our case my Mum was supposedly diagnosed back in 1999 at a memory clinic, but until late last year we'd had no contact with any services, CPN etc. I then started to rattle the medical cages as things had become unbearable, and it was admitted by the consultant that there should have been follow up on the case but it did not happen.
    Welcome to TP it's a great source of support,:) but sorry you have to be here.:( it's great that you care so much for Nan and your Mum & Dad, but don't forget your own life will you;)
  14. Helena

    Helena Registered User

    May 24, 2006
    IMHE if a patient has Vascular Dementia their condition varies wildly from minute to minute , hour to hour and day to day

    They are also quite capable of appearing totally normal for short periods if they want to impress
    My Mother who is 90 is all bright and breezy if one friend goes to see her but totally uncomunitive with another

    She can chat interminably to my sister although often it makes little sense

    yet she will be very difficult with me or other family members
    She sends nurses off with fleas in their ear if they try to do Blood pressure readings and refuses to take meds some days but not others

    She is very confused and has long blank periods and will sleep like the dead for 24 hours where nothing even a bomb will wake her then she will be wandering and agitated
    symptoms she had last week will be different this week and so it goes on

    You simply never know where you are with and you go home feeling confused yourself barely believing what you have seen
  15. TinaT

    TinaT Registered User

    Sep 27, 2006

    Hi there. So sorry you are having such a confusing and upsetting time. I can only give you my own experience here (although my husband Ken was willing to participate and I know that your mum isn't). Hope it helps anyway.

    Step 1 - Went to GP who referred him to a geriatric specialist.

    Step 2 - GP had referred to the 'wrong clinic' so 3 weeks later had to phone a new number to get an appointment at the 'elderly mental health' clinic.

    Step 3. - The specialist came out to the house to visit us. She did a quick memory test there and then. No mention of a diagnosis!

    Step 4 - Got a letter from her asking me to phone another hospital. This was a university hospital with more specialist diagnostic procedures.

    Step 5 - Went to hospital. Was seen by a professor who took case history from me with Ken present. Then Ken went off for a battery of tests without me.

    step 6 - Got letter to go back to teaching hospital. Was told Ken had Lewy Body disease.

    From this diagnosis, everything then swung into place fairly well. Had visit from Admiral nurse who had been informed by local specialist. She gave lots of advice, help and information about other agencies. Also got a good social worker who has helped me a lot.

    Now get help 3 mornings each week and morning care at a centre 2 days a week. My life is soo much better!!!! Hasn't made a great deal of difference to Ken as he is the one who is suffering from this horrible, gut wrenching disease but has certainly helped me to care for him.

    Don't know how this will help you, or how you are going to get specialist help with your mum not co-operating. Is the GP concerned one who is working in his/her own practice or part of a group practice? If it is a group practice perhaps you could ask to see one of the other doctors. Ask to speak personally on the phone to the doctor and arrange to bring mum in for a 'check up' stressing to the doctor that she would not come if you told her it was because of her symptoms.
  16. TurquoiseAnkh

    TurquoiseAnkh Registered User

    Nov 2, 2006
    thanks guys for all your help

    It is very frustrating not to be taken seriously by SS even though she was diagnosed with Alzheimer's by the memory clinic.

    However, i discovered when i got home yesterday that my dad had had a phone call from social services and they told him that when she goes on her daily wanderings a man who is a carer and lives nearby (she doesnt know him) has seen her and talked to her on a number of occasions, and yesterday he rang SS to say that he was very worried about her. SS are now taking us seriously as someone other than a member of the family has voiced concern. They are now saying that they believe something is seriously wrong and are actually sending a CPN, not just a normal nurse (as they did before) and they have said that they may suggest for her to be sanctioned after her recent behaviour (attacking a man in the WRVS, trying to break into cars, stopping cars and screaming at the drivers and nearly getting run over etc). But obviously we will only have her sanctioned as a last resort, we are just happy to be taken seriously and to be getting some help at last.

    Good luck to everyone
    will keep u posted xx
  17. MJK

    MJK Registered User

    Oct 22, 2004
    Glad to hear you're getting help at last - but how frustrating that it takes the word of an outsider to finally get things moving!

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.