A Welcome Care Pack for New Members

Discussion in 'ARCHIVE FORUM: Support discussions' started by Jude, Sep 14, 2004.

  1. Jude

    Jude Registered User

    Dear New Members,

    A very WARM WELCOME to Talking Point.

    This forum is to enable eveyone to ask questions and receive help, solace and advice. No question is ever too insignifcant to answer - so please don't be afraid to post, or just browse. As carers, we all need support!

    At the very top left hand side of this TP Forum Page, you will notice a small box marked 'Fact Sheets'. These Fact Sheets are full of extremely useful information from the Society and cover a multitude of subjects.

    Here are a few that you may wish to look at initially -

    400 - What is Dementia?
    401 - What is Altzheimer's Disease?
    471 - Next Steps
    454 - How Health and Care Professionals can Help
    467 - Financial and Legal Tips
    472 - Enduring Power of Attorney and Receivership

    Don't forget the other Forums. There is a 'Tea Room' where you can share jokes and poems. A Resources section full of good advice about questions that often crop up - and a Book Swap Library too - as well as other forums about fundraising events.

    If you need any help, then please just ask....!

    Warmest Regards,

  2. Chris

    Chris Registered User

    May 20, 2003
    Spreading the word about TP

    Hello Jude

    I was thinking about writing an article for out Branch Newsletter about this Forum. Now you have posted this excellent 'Welcome Pack' - what do you think about reproducign it - complete with side margin and your photo ? I think seeing it as it appears on screen will be helpful & might encourage more to try it.

    I'm also thinking that , with the authors permission , copying some of the threads & showing to relevant professionals would be an excellent way of educating them. I'd prefer they had a scout round the Forum for themselves but have not had any success getting them to do that - they all seem to busy to breathe. In desperation really I thought of printing off some messages - it is a public Forum - though it doesnt always feel like that.

    Appreciate your thoughts on this - I want more professionals to 'feel it' - I know that makes it harder for them but ......... Also I think the more they know the better they can prioritise the funding - its not a bottomless pot. I'll stop rambling !!!!

  3. Jude

    Jude Registered User

    Dear Chris,

    Of course you may use the pack and my photo. The more promotion we can get will be all too the good, in my opinion.

    Any other posts you'd like to use, would have to be as you say, with the individual author's permission.

    Kind regards,

  4. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    Near Bristol

    Hello there.
    I would love to get copies into my local surgery but would need more than one copy of each. I would also like to post a message re this forum also.
    Any suggestions as to the best way to this?
  5. Jude

    Jude Registered User

    Dear Snuffy,

    Once you access the Fact Sheets, you should be able to print a page of each directly on your computer. Also Craig's Talking Point Flyer is available now.

    Best wishes,

  6. Ari

    Ari Registered User

    Apr 12, 2005
    Thank YOu

    I have only joined this site today and thank you for your information I hope to be in a poisiton to view all details in the next few days.

    Ari :confused:

  7. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    blood tests

    My husband has been diagnosed with VAD, when i asked our G P could it be AD as well he said this had been ruled out by a blood test . Does AD show up in a blood test? :confused: CYNRON
  8. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    blood tests

    Thanks Norman.
    I think i need to talk to our G P as i thought he was saying a blood test had ruled out AD. A mri scan was read as VAD.
    Cynron. :confused:
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I think you'll find that, as the leaflet says, there is no blood test for AD, but it can show other factors that may be producing dementia-like symptoms.
  10. st.clair

    st.clair Registered User

    Nov 6, 2005
    advanced dementia

    My husband, 73, has advanced Alzheimer's. He is immobile - moved from bed to chair by carers, is doubly incontinent, hardly speaks, but still recognises his friends and enjoys a joke. He has to be fed with pureed food and has his drinks thickened. I am 10 years younger and still able to cope. I am sure there must be others out there in a similar position and I would love to hear from them.
  11. connie

    connie Registered User

    Mar 7, 2004
    Warm welcome

    Hi St.clair, thank you for joining us. You sound very positive in your outlook. I am sure you will find many people on this forum willing to swop experiences.
    Regards, Connie
  12. st.clair

    st.clair Registered User

    Nov 6, 2005
    advanced dementia

    Thank you, Connie. Yes, I think I am positive , but am feeling a bit down as David seems to have slipped a notch since he was in hospital with a chest infection. I don't know how much longer I can keep him at home, but until he doesn't recognise me I will cope. Look forward to hearing from people in the same

  13. Eclair

    Eclair Registered User

    Nov 29, 2005
    Thank you

    I am so glad I found this site. For the last four years I have been dealing with all the things your members discuss and am now at the stage where I don,t know where to turn.My Mum,first went into an Aged care Facilty which was a terrible blow to her as she had always been an independent woman.The worst thing that happened there was that they lost her dentures. After enduring two years there, she had a fall and we were told she'd have to move into a Nursing Home. Easier said than done,but in the end we found a place. At this stage Mum was still able to walk with the aid of a walking frame.This was discouraged as she would head for the front gate, so after we returned from a short break,we found she could not walk any more! then her glasses were lost.

    Finally I couldn't cope with the way they treated Mum as if she were a child or a baby any more so I moved her to a much better facility,hoping she would be treated with the respect and dignity a 92 year old woman with dementia, deserves. She now has her own room,T.V. better meals and there is a better ,more professional approach to her care,but because she is so tiny, and so helpless,Some of the staff seem to thinkshe is an infant.I know she is stillthe person she always was inside there somewhere,and has feeings,and she would be so angry at the way people are treating her.

    I don't want to start complaining and get people off side ,but I just don't know what to do any more!
  14. cobweb

    cobweb Registered User

    Nov 24, 2005
    n .e. uk
    Care pack

    Only joined today.Will hopefully catch up soon.
  15. connie

    connie Registered User

    Mar 7, 2004
    Dear Brenda, welcome to T.P. You will find lots of advice and support on the forum. Hope to hear from you soon, Connie
  16. chrissie52

    chrissie52 Registered User

    Nov 29, 2006
    Severe Anxiety

    Hi Jude

    Thanks for setting up the welcome pack for new members like myself. I am an IT professional so have been able to use the web to find out a lot about my mother's condition, but am still finding it difficult to cope with. I see my mum every day, and my dad spends hours a day with her, but we are really struggling.

    Initially diagnosed about 6 years ago with severe anxiety, when she was physically mobile, but terrified of almost everything a lot of the time, she was treated for a short period (following a very good anxiety course in a North Wales hospital), with Respadol and this led to (According to her notes) Respadol induced Parkinson's Disease. Over the course of the last six years the diagnosis has constantly changed and continued to be very difficult, and last year her mobility ceased and she was diagnosed with "Lewy Body Dementia", a form of dementia assoicated with Parkinsons. Her consultant continues to question this, and has stated her condition is very unusual.

    She is in a care home, and has to be fed and looked after at all times. However she has different phases of behaviour each day. This can be as follows: 1. Sleeping, 2. Awake, alert, talking rationally, recognising family, able to discuss her condition and outside events quietly. 3. Confused, needing reassurance about what is happening, who is in the room, where she is but able to understand 4. Agitated, arms trying to pick up things not there, delusions, asking people to go away (eg the people who want money from her) but verbally responsive when asked questions 5. Severe agitation, wailing and screaming, totally unresponsive.

    There appears to be a "pattern" for these behaviours, but it has not been possible to prevent the last 2 conditions and family, staff and doctors have tried with a variety of treatments, including pain treatment (paracetamol and voltarol), demtia treatment (rivastigmine, quietapine) and reducing madopar (for Parkinsons) to a low dose (but too low and she becomes very stiff).

    These symptoms of dementia are getting worse, but physically she eats well, and appears to be pain free at some times (she says she is comfortable), so we are at a loss.

    The psychiatric nurse suggested she mix with patients more (to relieve boredom) but going out of her room to join them terrifies her, and she shakes and becomes hysterical. As it is she has family with her usually around 6 hours a day, so she is not alone all day.

    Any advice? I'd like to find out if anyone else has seen this sort of "pattern" of behaviour, and how they have dealt with it.
  17. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Chrissie,
    Can't help but just wanted to welcome you to TP!
  18. carolyn

    carolyn Registered User

    Dec 1, 2006
    should I tell my partner he has dementia?

    My other half was diagnosed with multi infarct dementia this year. It took me two years of battling with hospitals and gps to finally have an mri scan done and see a consultant neurologist. This cosxt £600 for the scan and £400 to see the neurologist.

    The first time we visited the gp was september 2004. He referred my partner to the psycho geriatrician. He didnt get to see him at all. In the end Maidstone hospital brought in a lcoum doctor from sussex. This person ordered batteries of tests. But the test results never got back to the Gp so I had to chase each one up separately. A year went by and the stiuation at home deteriorated. My partner was lying down all day feeling absolutely rough..hardly speaking at all. His words are jumbled and he cannot write.

    When finally we paid to see the neurologist my other half was so ill he could hardly take in anything that was said, and nor does he ever ask.

    His son suggests I tell him but he is already very low in spirits and only just managing. Of course he knows he is ill and calls this 'lost memory'. So far I have been loathe to say any more to him because I do not want him to become even more depressed.

    This must be a common problem. What do you think???

  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Carolyn

    I never told Jan, nor permitted anyone else to do so. It was always just "memory problems", and I don't think that was a bad decision, in our case.

    Everyone has to make their own call, though..... and it ain't easy!

    Good luck, and sorry you have had such a rocky road. I was fortunate to have private medical care from my work, and that applied to Jan. Once she was diagnosed they dropped us like hot cakes.

    The private medical care got us early appointments, but I was not impressed by any of the 'consultants' or the gravy train they put us on. The best we had was NHS, St George's Hospital London. That was really good, fast, and conclusive... that her heart was fine.

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