1. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    I just tried to post, but it didn't seem to work!
    I just wanted to say hello and introduce myself. I'm 24 my grandma has dementia, suspected Alzheimer's. We are having real trouble, as every so often she has episodes where she gets paraniod and deluded. At these times she claims not to live where she does, and leaves. This usually means she's walking the streets alone, sometimes at night. We've been lucky so far, but it's only a matter of time before she is mugged, hit by a car or has a bad fall.
    Her GP and social services say that they can't do anythign (e.g. full medical examination, check her current medication etc) until she asks for help, but, as she is paranoid and deluded, she will never do that! Is anyone else in this situation? What can be done?
     
  2. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Katy can't one of your parents make an appt with her GP and take her down and go into see the doctor with her? This is what I did with my mother. If she has dementia/Alzheimers they will refer her to a consultant in geriatric phsychiatry and she will begin to get the help she needs. You will probably get a visit from a CPN (community phsyciatric nurse) whom will do a test. It involves questions like, who's the current prime minister? etc (bit daft really but this is how it works). That's what happened to my mum. After the CPN tots up the score then my mother was put into an assessement unit where your gran would stay for a while and be observed. They will assess her future needs and also maybe try her on drugs. I can only tell you from my own experience, but this was the path we took. I then took mum home and look after her full time. It is very difficult and your family may want to make different arrangements but if you can get the social services etc involved you will then get this help but you must get your gran to her GP for referrals etc. Hope this helps. There are lots of others on this site whom will be able to give you better more detailed advice. I'm sure you'll hear from them soon.
    Good luck Katy.
     
  3. Jude

    Jude Registered User

    Dear Katy,

    Welcome to Talking Point. I'm very sorry to hear about your Grandma. From what you say, it does rather sound as if she needs some help right now, before she has an accident.

    There comes a time when elderly people just have to be helped because they refuse to believe there is actually anything wrong with them. This is when another member of the family, such as yourself, has to step in and insist that the Doctor and Social Services take notice!

    Do speak to her Doctor again as soon as you can and impress upon him the urgency of the situation and your worries about her.

    Have a look at the Fact Sheets at the top left hand side of this page, which will give you all sorts of advice about where to seek help. Also, it might be helpful to speak to somebody on the Altzheimer's Helpline, who will be able to advise you further.

    Kind regards,

    Jude
     
  4. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    Thank you both for your replies and advice.
    Mjaqmac, we have tried this approach, and the GP refers her on for further assessment but she refuses to go! And there's no way they can make her. The CPN is a reguar visitor, and does seem to be keeping an eye on her abilities (she said she noticed a sharp decline between her last two visits, about 6 weeks apart)
    However, my Grandma has taken a great dislike to this "meddling nosey-parker" and refuses to see her.
    All of the agencies involved seem to start things off (refering her to a clinic, or for further assessment) but then it is up to HER to make an appointment, and she refuses to when we remind her. She claims "there's nothing wrong with me", and any time she has been reminded of previous events (large things: wandering, claiming not to be married to her husband of 50+ years, small things: having no idea about her own age or the age of her grandchildren, forgetting which city she is in) she either denies them or plays them down, and claims she was joking.
    Jude, I will print off and read the fact sheets, thank you. I have talked to an Alzheimer's Association helpline person, they were extremely helpful, and told me about a lot of practiucal things, but they admitted the situation was nearly impossible to resolve. She will have to be sectioned before long.
    Thank you very much for your help, I am sorry if I ever come across as rude or bad tempered, but the situation makes me so frustrated!
     
  5. Jude

    Jude Registered User

    Dear Katy,

    You must be frustrated beyond belief...! Don't ever feel that you can't post some complaints and moans here though. That's what TP is for.

    Keep on pushing everyone to help you, before Grandma gets into serious trouble. Oldies can be so stubborn!

    Best wishes,

    Jude
     
  6. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    Thank you! I will keep trying and keep you informed.
     
  7. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    hi katy, one thing we did with my dad which worked sometimes was to get people to write to him directly with an "invitation" or confidential letter to come and visit them. Dad then thought he was doing something secret (he would try to hide it from us!) and important and would go to the appointments.
     
  8. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    Mmm some variation of that may be useful. In actual fact we would love for her to feel in control - yes she has an illness, but she is handling it (with our help). Unfortunately she refuses to admit that there is anything wrong with her. However, her doctor does ocassionally contact her to discuss her 'blood tests' (we are hoping he is actaully monitoring her ability to carry out a normal conversation) and so maybe something along those lines would work, if we could set it up.

    I have been reading about Ebixa in the fact sheets. What is the most reent general feeling about it? I have read glowing reports, reports that it made no difference what so ever, and reports of side effects. I would love for something to be able to just moderate her symptoms. On the other hand, when she is delusional, in my opinion, a sedative would be effective in calming her and diverting the crisis, and an anti depressant would help in general. What are your thoughts on this?
     
  9. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    my dad was on Aricept which worked really well for him, stopping the degredation of his short term memory. Doesn't work with everyone, and then the consultant stopped it (after asking dad if it made him feel better, and dad saying he didnt know!) He's just started Ebixa now, which is supposed to make him less unsettled. two weeks and no change yet. Be careful about the anti-depressants, they can make a sufferer more anxious and mask the true position, not always good for older people, there's some good stuff on the web. . . and then there is the temptation to take them yourself.
     
  10. Jude

    Jude Registered User

    Dear All,

    Ebixa takes several weeks to kick in. I expect the dosage is prescribed in increasing amounts. It either works wonderfully or not at all.

    Jude
     
  11. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    And if it doesn't seem to have had any effect in a month or two, is the best thing to assume it's not working and gradually reduce the dosage back to zero?
     
  12. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    The "System"!

    Oh the frustration of this situation of having to ask or accept help!!!! It makes my blood boil.

    Its about time the powers that be realised they are often putting others at risk by not interfering - its about time someone got sued for negligence (even though I hate that part of our culture).

    It is only by grace of God or luck - whichever you prefer - that my Aunt was eventually stopped from driving having got lost and gone through red lights. Family and friends had all tried to convince her that the time had come to take buses and taxis etc.

    This was followed by an initial stay in hospital (overnight only as she discharged herself) that made a few of the professionals at least listen and log her into the system. However nothing could be done if she didn't want it. The following months were an absolute nightmare as we live over an hour away - trying to trick her into accepting help, and panic calls from neighbours as her health rapidly deteriorated as it was clear she could not look after herself properly.

    Eventually an agency carer (a home help who she had employed for a few years) found her unwell and called an ambulance. Her behaviour in hospital was so clearly affected by the dementia that they had no alternative but to suggest she ought to be cared for. I say "suggest" as it was no more than that - unbelievable really considering the state she was in. Then it was up to us to find a suitable home and to basically decieve her into thinking it was a temporary measure.

    What if she had been in a collision and someone else had been killed? What if she had left the gas on? What if she had set fire to the numerous circulars she used as ashtrays? It wasn't just her own safety - it could have involved bystanders and emergency services.

    My Aunt was a wonderful woman who would never have put anyone at risk but this blasted AD is like a parasite that gradually takes over from its host. Its nothing short of evil in what it does to the sufferer and to all who have contact in whatever form.

    Keep hassling social services, the doctors etc, log every conversation or confirm details of discussions in a letter to them afterwards - they don't like that! Write down your concerns and if you feel their responses fall short of keeping her safe then include that in the letter - keep copies...

    Oh dear - I've obviously had a very bad day at work - I think you found my tender spot!

    Keep posting - it will help you I am sure.

    Good luck
    Kriss
     
  13. Jude

    Jude Registered User

    #13 Jude, Sep 14, 2004
    Last edited: Sep 18, 2004
    Dear Kriss,

    WHY is is SO difficult to get people to understand about AD?? Especially people who are the ones who have the authority to take instant action....????

    DRIVING....... Crikey, my father was Hell on Wheels! I had a couple of horrendously memorable trips to Sainsbury's with him and, let me tell you, I am NOT a good passenger at the best of times. The first involved him grinding to a dead halt on a round about, since he had forgotten where he was going. He then decided to REVERSE!! Fortunately there were no other cars around at the time, which is very unusal. [Thank you God...!!!] Next time he took a corner too closely and blew a front tyre and we hit a wall at 15mph. That was the END of it for me. He still would not admit that he was wrong though.

    I phoned the Consultant Psychiatrist and took Dad in for a meeting. They convinced him to stop driving, since he wouldn't listen to me. To this day, he still thinks he was taken to Court. I had to phone the DVLA to have his license revoked and only then would he accept the situation.

    Now, when I see all these elderly people driving around, I wonder how many of them have AD and just how many of them are going to kill themselves and others just because nobody has thought to intervene in time.

    So - if anyone has the slighest worry about their loved one's ability to drive safely - DO SOMETHING NOW.

    Jude
     
  14. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    Thanks Jude, I know it shouldnt but that really made me laugh!
    come on arsenal
     
  15. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Katey
    at this stage it is not much use discussing drugs as they are not available except through the consultant.
    Visits can be arranged at home and that is down to the GP.
    Following a discussion with our GP my wife received a visit at home from the CPN
    A visit from the consultant followed and it all went from there.
    You must push the GP by any means that you can
    good luck
    Norman
     
  16. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Thanks Jude

    In the end we had to resort to deception in order to put a stop to the driving. A kindly policeman suggested we remove the rotor arm or some such thingy just in case Aunt "forgot" that her licence had had to go off to DVLA as she had been "in hospital" (more deception!).

    I was gobsmacked to see she got a letter from DVLA a couple of months ago apologising that they were taking so long to review her case - it was actually suggesting that she might get the licence back - despite me having sent it with a covering letter detailing all of the horror stories.

    What do they think they are doing? What if she hadn't progressed that far down the line - it might have re-seeded the idea of getting behind the wheel again!

    Oops - I'm off again...

    Kriss
     
  17. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    and Frazer...

    only 1 - 0 ???

    Kriss
     
  18. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    kriss, a win is a win!
     
  19. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    Thanks everyone for all your advice. I will definitely make sure we document everything that happens and everything that is said or done by a professional.
    Luckily my Grandma has never driven, I can't even begin to imagine how we would handle that particular problem!
     
  20. Jude

    Jude Registered User

    Dear Kriss,

    We also received a letter from the DVLA reviewing my father's case, which naturally brought the whole thing back up in to his memory again. It took him over a year to come to terms with the fact that he wasn't going to be able to drive again.

    I think it represented a final loss of freedom for him. He also kept on about his 'Court case' and saying how awful he felt that he had caused an accident after a life time with a pefect driving record. It was so sad at the time and I felt very guilty for instigating the deception as well, however necessary.

    Jude
     

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