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  1. #1

    Help - Lewy Body Dementia

    I believe my Dad has LBD.

    Minor visual halucinations of a little boy and girl, singing and dancing in front yard, some animals and other kids around the house - outside and non threatening. Biggest problem is the insomnia. He doesn't sleep - day or night.

    At night he is up every 15 minutes to check on me sleeping on the couch. Yes, all lights are on as it gets worse at night - sundowners. GP Doctor had me bring him to hospital. They find no other medical conditions but emergency room takes them so long that his restlessness kicks in. Soooo.... they hit him with drugs. Ativan, Zeprexia, Geodon, Xanax, Haldol, Seroquel, Abilify, etc. Now, he becomes combative so they give him more neuroleptics. They don't listen to me and of course, do what they want. In 24 hours they reduced him from an independent ADL man to unresponsive, restrained and completely disoriented that he doesn't know me or the rest of the family. He is in his early 80's and I believe this is early onset. After 2 weeks in the hospital - I believe he may be terminal dementia. They now want to ship him to a nursing home. No diagnosis / evaluation or medication for dementia given. Please help/ Is this normal???? Am I in denial?
     

  2. #2
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    They can't make him go into a home against his will unless they section him or unless they can show that he is not in a position mentally to object. If they try and you're the nearest relative (which is legally defined), you can object and appeal to a panel. He would be entitled to a mental health advocate and a solicitor but may have to pay for the solicitor. You need to look up "Mental Health Act", and "Deprivation of Liberty Safeguards". A quick look at the Mental Capacity Act may be of help. If you're not comfortable with looking at legislation, the Mind website has some guides. I'm afraid I haven't checked out what's on this website about it (perhaps someone who's been here longer could help?)

    Even showing you know his rights and will help him to fight if need be may be enough to prompt them to go through proper procedures and assessment.

    However, do check to see whether this home is permanent or an assessment unit - assessment may be exactly what they plan to do.

    Incidentally, lack of sleep can cause hallucinations, so that cause would have to be ruled out.

    I think antipsychotics have changed many lives for the better, including those of some older adults, but I think that you're right to challenge this, because you know him in a way that others don't and if they take him off them to assess him for a while, they can always put him back on.

    Perhaps I should say that my technical knowledge of mental health law and antipsychotics (neuroleptics) relates to working age adults not older adults and you don't know me from Adam so please do check for yourself.
     

  3. #3
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  4. #4
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    Lots of things can cause hallucinations (other forms of dementia, urinary infections, delirium), but if it is Lewy Body dementia (or even a suspicion of it) they should not be treating with neuroleptics unless as an absolute last resort as they can be extremely dangerous. http://en.wikipedia.org/wiki/Dementia_with_Lewy_bodies "Due to hypersensitivity to neuroleptics prevention of DLB patients taking this drugs is of great importance. People with DLB are at risk for Neuroleptic Malignant Syndrome, a life-threatening illness, because of their sensitivity to these medications, especially the older Typical antipsychotics such as haloperidol. Other medications, including drugs for urinary incontinence and the antihistamine medication Benadryl can also exacerbate dementia."

    Are you in the UK or elsewhere?
     

  5. #5
    Cheryl - This is very upsetting to hear. Nobody with Lewy Body Dementia should EVER be given drugs such as Haldol. And the other drugs you mention can do the same negative things. Please be sure to have them write on his chart (and be sure to have on a bracelet when admitted anywhere) that he is ALLERGIC to these meds. That is the only way they will listen unfortunately. I am sad to say that some people never come back to where they were after being given these drugs. Others may come back to some degree after a few weeks. You absoslutely do not have to have him go into a nursing home. You have a choice. But I would also speak to a lawyer since you told them about his sensitivities to these drugs and they didn't listen. You are not at all in denial. The people who didn't listen are totally in the dark about LBD. There are brochures and literature that they can be given. Norma
     

  6. #6
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    Hi
    Might be completely different but my mum kept getting severe episodes of delirium - hallucinations, disorientation, paranoia, falls, rubbish cognition. Geriatrician thought it was dementia with lewy bodies but ruled that out 18 months later because in between she wasnt getting any worse and her gait/posture hadnt deteriorated.
    In mums case usually a UTI was the cause, but constipation or some unknown infection also caused it. She was adamant she didnt want to go into a care home or be admitted to hospital, but each time she ended up as an emergency admission and was so scared and confused at being in a different environment that often she would become aggressive ( all 4 foot 10 of her, 7 stone wringing wet) and had to be sedated and given IV antibiotics and Haldol. She would be weeks coming round from this but each time got back to her previous functioning.
    Do what you think is right. Most times the NHS cant deal with peole who fluctuate so wildly. If we had listened to the NHS and social worker she would have been in a care home long ago
    Beth
     

  7. #7
    As well as the good advice about the Mental Health Act, I would be making some preparations for his return home which is what you are now fighting for. You are going to need all the help you can get to both keep him safe, and yourselves from carer breakdown as it is a very difficult illness to cope with. I would suggest that you need to ask social services about what they can help you to put into place for his return home.

    I nearly screamed when I head the word Haloperidal. I've written on this site so many times about the dangers of this drug, most especially to Lewy Body Suffers. My husband was precribed this by the GP for some 6 months. When I went back to the neurological unit where my husband was finally diagnosed, I was horrified to be told that he should never have been prescribed this. There are many, more modern and safer drugs which will help 'dampen down' the hallucinations and obsessive behaviour of LBD suffers.

    xxTinaT
    If you don't stand for something, you'll fall for everything....
     

  8. #8
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    I'd like to see a Moderator comment on this thread. Someone with a bit more knowledge and training.

    Stick in there Cheryllh, you are doing a great job.

    Margaret
     

  9. #9
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    As far as I am aware, Margaret, none of the current moderators have specific direct personal experience of Lewy Body Dementia. Happy to be corrected if I am wrong.

    Reminder of CraigC’s signature might be appropriate here?: This forum is not a substitute for professional medical or legal advice. You should consult your doctor, or other relevant professional before making any decisions that could affect you or others. Help on this forum is only provided through shared experience and peer support.

    Cheryl, you don’t sound in denial at all – rather in a panic, which is perfectly understandable. The diagnosis of (or best guess) at different types of dementia is generally a long slow process .... are you in the UK – the situation you describe and some of the phrases you use do not ring 'familiar'?

    Let’s hope we can help,

    Love, Karen, x
     

  10. #10
    I've had more than 10 years experience coping with my husband's LBD and will stick by every word of my post. All we can do here on TP is to support, understand and pass on any knowledge that this difficult, hard journey has knocked into us. No we are not medical professionals but do know some things from personal experience and all we do, we do in good faith.

    xxTinaT
    If you don't stand for something, you'll fall for everything....
     

  11. #11

    Lewy Body Dementia

    Thank you all so very much. I am glad there are some people listening. My Dads situation is worse then what I descirbed above. During the first night at the hospital they left him alone, unrestrained and unsupervised sitting in a chair. He had received over 15 mg's of haldol, over 4 mg's of Ativan and 2 mg's of Zeprexia in 8 hours. This on top of his regular neuroleptics started only a few days earlier (Seroqual 62.5 MG daily and Depakote of 750 mg daily(. ut his GP. Oh yes, he went for the door. Accordingly, it is reported that patient was observed unconscious and unresponsive laying on the floor. How long - good question. Well, 3" gauge in the back of head but no concussion. If anyone has medical background they know as well that is just BS. Since then he is not right. Maybe brain damage. Hospital had him committed involuntarily but then discovered they had my POA since admission. Backpedaling now to have Judge revoke with new order. It is unbelievable to go through this. I do not want legal advise as I already have plenty of sharks around, was just needing support on the Lewy Body Dementia. My Dad is really bad, I don't think he'll come back from this. From cooking his own breakfast and sociallizes with neighbors to completely sedated and like comatose in 24 hours hurts. It hurts bad. Thought I was prepared but..... Does progression go this fast. I was described a progression of stairs. Levels at a time. However, Dad's status is as if he jumped off a steep incline, no stairs at all.
     

  12. #12
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    A sledgehammer to crack a nut?

    Hello Cheryllh,

    It sounds from the list of medications (which sound quite American to me? - is that where you are?) that he has been given a lot of sedatives etc to tackle the extremes of behaviour.

    Are you able to speak with the doctors treating him to find out what their treatment plan is? It might be that he has been sedated to make him manageable in the hospital situation whilst they work out what the problems are.

    My mum had LBD. She had small issues with hallucinations, but greater issues with executive function which is a particular feature of LBD.

    Even with a common diagnosis each person's problems are particular to the individual. So I can't say whether your father does have LBD - or whether his treatment is appropriate/correct - and it doesn't read as though you have an official diagnosis as yet. Whatever his particular problem, you are unhappy with the way he is being treated. As you have a POA (does that cover health & welfare issues as well as financial?) it should be possible to speak with the Medics as it doesn't sound as though your father "has capacity" right now.

    Good luck & keep us updated - it can be an uphill struggle trying to get information from "the powers that be". I hope your father makes some recovery.
    Last edited by nicoise; 06-09-2012 at 06:36 PM.
     

 

 

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