BBC Today programme , Reminyl stop - & constant closed eyes

Discussion in 'ARCHIVE FORUM: Support discussions' started by germain, Dec 12, 2007.

  1. germain

    germain Registered User

    Jul 7, 2007
    Hello all,
    And firstly apologies that I can't seem to manage the technology properly yet to link my posts into previous threads . I know I've posted to someone about constant sleepiness and eye closing but have no idea how to trace it.

    Anyway - firstly - I've had an email from Jon Manel re the Today Programme coming up next year about caring for the elderly - he wants to talk to me - should I do it ? I've got to say that after the last BBC shocker I'm very "iffy" about this.

    Our news re our Mum is that she was visited in the CH by the memory consultant today who is taking her off Reminyl because of her developing physical health probs (atrial fibrillation and TIAs) She will reduce the dose gradually over the next couple of months. On top of this Mum has yet another UTI and oral thrush - which could explain why she took her teeth out and hid them yesterday at breakfast - we've just got the very large Xmas tree left to search now !

    And finally and hope this will help with a previous question - and this is the thread I can't trace - I responded re constant eye closing and "false" sleep - saying that our Mum uses it as avoidance in a stressful or new situation - her consultant has now said " and she will also possibly use it when in pain from her arthritis or UTIs etc" God - we've been so wound up with the psycological (sp?) aspect - we'd never thought of constant nagging pain - she never really complains ! - So its a trial of mild painkillers for a few days to see if this has any positive effect.
    Going away now with yet another attack of the guilts - how could we not think of this ?

  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    How would you know Germain? Our reaction to pain would be to wince, or put our hands to the painful area. Closing eyes has never signified pain in my experience. But thanks for highlighting it for us.

    Love xx
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Germain, it would be good if you could do it. All publicity is good.

    First of all, ask what the programme is about. Then ask what the angle is going to be. Ask them to send you a list of questions. Write out your answers, and send them a copy.

    They won't stick to the script, they'll jump about so thst it doesn't sound scripted, but they should stay within the agreed framework.

    If at any time you're not happy, say so, and pull out. Don't forget you're doing them the favour, so they have to abide by your rules.

    Having said that, I've always found the reporters pleasant and friendly. The only problem I've had was with a newspaper. The reporter did a reasonable job, but some sensation-seeking sub-editor twisted something I'd said and splashed it as a banner headline!

    Radio 4 should be reliable. Just avoid red-top newspapers.

    Good luck,
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    My mother always wincing her eyes closed for a while , never thought to ask if she in pain , just like you .

    must ask her next time she does it if she in a pain .

    Why not ask what kind of question he going to ask you first . talk to him . then if you don't like what his asking or not putting your concern in a manner you like it to be expressed just say No
  5. CraigC

    CraigC Registered User

    Mar 21, 2003
    #5 CraigC, Dec 12, 2007
    Last edited: Dec 12, 2007
    Hi Germain,

    I find this extreemly interesting and disturbing at the same time. This is why I've been pushing for more clarity on the side effects of these drugs and how we as carers can spot the difference between the drugs and the effects of dementia.

    Just to clarify, my dad has been on quetiapine for about 2 years now - a low does 25mg twice a day.

    I've seen this with dad, particulary over the last two months.


    I've also seen this with dad, but over a much longer period, nearly a year.

    Had all sort of theories thrown at me. Pain tolerance with dementia being lower and the wincing of pain as he apparently is more sensitive to pain.

    I'm as confused as anyone and really do not know where to turn regarding the use of these drugs and how on earth to spot the difference between side effects, dementia and real pain.

    Sorry not much help, but just want to say I really know where you are coming from.

    I wouldn't hessitate. But it is your call and down to your circumstances. Anything that highlights our plight is positive. I realise that the panorama programme caused a lot of upset (me included), but at least it highlighted the issues and confusion that many of us are having. And it got us all discussing the guilt side of things. How can we feel guilty if we aren't being giving clarity and guidance.

    Germain, I understand the guilt attacks, but we must keep fighting for awareness and clarity on these issues. Hopefully in all this mess we may get some questions answered.

    Kindest Regards
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    would like to add emotional Pain , just that something my mother said to me that was distressing her and keep saying ''why does my leg hurt me when I talk about that'' .

    That just got me thinking if mum can't tell what emotional pain is says she feel it in her leg , how she going to tell me where she feel real pain . she was not wincing her eyes at the time .

    I have ask her why she does it , she does not answer just smile back at me stop doing it then few min later does it again . if your father does that also it can't be the side effects of the medication as my mother not on that type of medication your father on
  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Craig, John was put on quetiapine when he was in hospital. He started sleeping all the time, and wincing and jerking, when he got the second infection.

    I asked if he could be tried without the quetiapine, and he's now been off it for a couple of weeks. The symptoms have not gone away, and he still sleeps most of the time, so in his case I reckon it's the progression of the disease.
  8. connie

    connie Registered User

    Mar 7, 2004
    Germain, If you feel up to it "go for it".

    Anything that furthers the cause. I would say I was treated very fairly in my recent media interviews.

    Just be prepared for what you want to say - not necessarily what they want to hear.

    Thank you for even thinking about it.
  9. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    Hazel makes some good points. As someone who's worked with the media, in my days working for big companies, I would never allow someone to be put in front of the media without an advisor with them, or their being media trained. Does the Alz Society have a media relations team? Could they provide some advice/assistance?
    It's not good for these things to be staged, but the individuals need to be protected, and the important messages got across....
    It IS Radio 4, so hopefully they will be sensitive and savvy....
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Germain

    I was live on the Today programme in November and I found the journalists and support people extremely concerned to get the right points across, and to ensure that the views of real people are used to balance the research they highlight there.

    Would you be live, at the studio?

    or live on the phone?

    or recorded?

    I'd say, do it! The programme is about the most respected one in any medium and I know the Alzheimer's Society is always eager to get subjects on there... :)
  11. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi again Germain,

    I've just had an email from Alzheimer Scotland asking if I'll take part in a radio 4 programme next year. I wonder if it's the same one?

    The one they've asked me to do is comparing social care in England and Scotland, and the financial implecations for the family.

    It would be interesting if we were both on the same programme!

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