Your thoughts required!!!!

Discussion in 'Researchers, students and professionals' started by skiddy, Nov 22, 2005.

  1. skiddy

    skiddy Registered User

    Nov 22, 2005
    Hi all, I am a new user. What originally brought me to this site was doing some research for a job I have applied for with the Alzheimer's Society HOWEVER what made me apply for the job is that my Mother, 65, suffers with Dementia and I have therefore had a growing interest in the subject for 2 years. Strangely enough I have known very little about the fantastic online support that is available and that i could have been accessing all this time!!!!!

    I am very excited that I have now got a job interview and want to be as well briefed as I can be...

    So, if anyone has a few minutes it would be great to get your ideas about what you think the Alzheimer's Society should prioritize in the terms of its development over the next few years, particularly in its services. What do people think the current strengths and weaknesses of the organisation (even the website!) are???

    Huge thanks for anytime you have to spare... there is nothing like the views of people that know to inform your research!!!!
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Skiddy,

    I don't know if you've seen it, but if you scroll down the list of forums below this one, you'll see "Researchers, students and professionals". There may be some threads there which give you some guidance.

    Sorry, I intend to post a more considered answer, but haven't time at the mo'

  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #3 Mjaqmac, Nov 24, 2005
    Last edited: Nov 24, 2005
    Hi Skiddy, welcome to TP, glad you found us.

    The only thing I can really underline that I think is very important is a support network for the carer. This really hasn't existed, but I think it's starting to come through now just how important it is. Just looking at how many people find this forum a God send tells that. If the carer is happy and feels supported then that is reflected in the patient too.
  4. Finnian

    Finnian Registered User

    Sep 26, 2005

    I'd echo that. I've just been writing a review on the carers group we have at work and its really made me think how much I value other people who are in the same position as myself. My "normal" friends don't realise how caring for someone whilst holding together the rest of your life is soooo stressful. The beauty of a support group like this is that I don't have to explain all the background to the problems because carers already know and understand. In my workplace group our loved ones all have different problems but many of the stresses are the same for us.

    I'm so glad I found this site. The advice is great - tried and tested solutions - although I have had some laughs as trying some of the solutions offered would be like dousing US in petrol and playing with matches. But that is ok because there isn't only one way - lots of creative thinking.
    I personally like this web group as its accessible at any time and I don't have to worry about waking anyone up.
    Its bitesize. If I only have 10 minutes I can still make it here and back.
    I'm still at home so I don't worry what is happening whilst I'm not there.
    The professional help (info sheets) is so organised and comprehensive.
    The postings are all so warm and friendly.
    I even get to practice my limited computer skills.

    I didn't intend to waffle on so much. Going back to your original request. I think its time for a focus on early onset problems. For older people the stone is rolling and gathering momentum; services are developing (although I appreciate that's not obvious across the country) There is still little recognition of early onset within most GP surgeries and things have to reach crisis before they are recognised. There is no facilities for long term care for 50 / 60 year olds only places in elderly care if you are "lucky".

    Also I'd like to see some family support. My teenagers struggle with what is happening to us but there is no support they feel comfortable with. I'm one of the youngest (mid 40s) at all the places I've looked at. My kids have different problems with our situation than I have. Bless them, they don't always share things with me as they don't want to load me up when things are bad at home.
    We could do with the equivalent of Al anon / Al ateen.

    Hope that gives you some ideas for your interview. Let us know how you get on.

  5. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Skiddy,

    I'd also like to see the Alzheimer's Society helping to ensure there is a support network for the carer for all the reasons stated by Majic and Finnian - and that it should ideally be provided right from the diagnosis of dementia (and even before in some cases) when people (usually with their carers) visit their GP for the first time with concerns about unusual behaviour/memory loss etc.

    Perhaps this also means more advertising? Your comment "Strangely enough I have known very little about the fantastic online support that is available" illustrates the fact that TP is just one area of support that is invisible to many who would greatly benefit even just knowing it's there.

    Good luck in your interview.
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Am in Australia so can't really comment on the Alzheimer's Society where you are at, but like Finnian I would like greater publicity and support of Early Onset Dementias.

    I would also like to see society's like A.S's publicise more about how hard it is for the family's to cope, and perhaps publicise more loudly the shocking realities of the disease, although I know this is quite difficult to do, because we don't want to go around distressing folk, but the world needs to know that this is not just a disease of 'forgetting' and that its not just a whimsical fading away but that it is brutal and painful and not at all nice (well at least that is how it has been with Dad). The world needs to know this to get more empathy and compassion and perhaps even funding happening for research and support. People with family members need to know this so they can make the most of the first few years and so that they can truly prepare for what will happen.

    As I read it when Dad first got dementia, he was supposed to forget names and words, have some trouble dressing himself and eventually (but a lot quicker than I now realise is the case) die in a soft dreamy hazy way. There is not enough information on the realities of the disease.

    One thing I will say though Skiddy is judge your interviewers well. A lot of what the 'real' people here are saying may not be the agendas your interviewers want to address (if you are lucky they will be the right type of people). If your interviewers are old fashioned and conservative just go with all the 'publicised; messages that are already out there, and then when you get the job, thats when you can start making a real difference! ;)
  7. daughter

    daughter Registered User

    Mar 16, 2005
    P.S. Coincidentally I read an article in my local paper at lunchtime today:

    "A leaflet campaign to reach carers unaware of the help available to them has been so successful it will now be rolled out in other areas across Essex.

    Castle Point and Rochford Primary Care trust displayed a simple A6-size leaflet, highlighting the support and services available to carers, on counters or in prescription bags in GP surgeries, pharmacies and clinics.

    As a result, 60 carers made contact with a further 13 making use of the therapies or counselling offered to them free of charge.

    The Essex County Council-funded scheme, which was originally piloted in Maldon, will now be launched in other parts of the county."

    I telephoned the people who organised the scheme and found that the leaflet had just their number on as the first port of call. Then I shouted the praises of the Alzheimer's Society web site and (of course) TP. I've now sent them the links and hope they'll be passing it on whenever the opportunity arises.

    Let's hope the scheme takes off country-wide - it may take a while to reach Australia though I'm afraid Nat. ;)
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Hazel

    if you can send their address to me by PM we can send them some TP leaflets for people to take away......
  9. skiddy

    skiddy Registered User

    Nov 22, 2005
    A Massive Thank You

    Just a huge, huge thank you to everyone for these thoughts and observations. i am getting the message from lots of quarters about 3 key themes:

    -Early onset - a priority all round (As this is my own Mum's diagnosis I am already completely sold on the problems here)

    -Strengthen carers support - including more 'unsual' carers such as young people or disabled carers (heard a great case of a lot of written info for a carer that is partially sighted!!).

    -More access to info. Signposting to other agencies that can help, particularly voluntary sector agencies, promotion of things like talking point and more reality about the social consequences of Dementia for the family.

    Nat - your advice was absolutely fab - I will try my absolute best to get the job and I promise you if I do, my agenda will never differ from what you all want and need. Whether I get the job or not I am so greatful that it has given the opportunity to meet you all.

    Thank you again so much everyone. I have till Tuesday - so please keep posting for me.

  10. jc141265

    jc141265 Registered User

    Sep 16, 2005
    On what I said earlier:
    This may be through no fault of their own, the information out there makes people believe certain things about this disease, and unless you have lived it, it is really hard to imagine what it is truly like. I think most of the time, because people only hear the 'real story' from one or two people they tend to think that these people must be hysterical, or have just had a 'different' experience to the majority, as TV shows, news stories and miscelleaneous publicity seems to say otherwise. A big reason for all this I think is also that by the time people who are caring for dementia sufferers begin to realise that their inabilities to cope are not just because they are individually weak but because this disease is hell on earth (!) they are too busy trying to just survive to really put across the reality of what is happening to them and their loved one. Also many don't want the rest of the world to see their loved one looking like this and some are even a little embarassed or ashamed (though I think this attitude is changing and it is definitely not on here). Finally when their loved one is at last released and so too thus are they, they've spent years just trying to survive so really have no energy left nor want to think about it anymore, to be much use in again spreading the 'real' word about the disease.
    Okay I've blathered on enough this morning, I really must get back to my study! :D
  11. skiddy

    skiddy Registered User

    Nov 22, 2005
    That is so true Nat..

    One of the things I have found about my Mum (I am not her primary carer my dad is) was trying to explain to people why she isn't like people think she will be when they meet her.

    Since I have been a working Mum I have really begun to appreciate how hard it was for her raising 3 of us and holding down a really responsible full-time job. I went my entire teenage years angry she wasn't about, always at work and gave her a tough time. Now I want to talk to her about that, I want her support for the challenges I face at work and with my 2 year old, I want her to know how proud I am of her. I tell her all this of course but I feel cheated that she just isn't that person anymore. She doesn't want to be reminded of those times or talk about them, it makes her feel more hopeless now (and i have tried to do it is so many ways but we all know how hard it is to have a meaningful conversation most of the time).

    I tell my friends a lot about how proud I am of her, but then i feel I am making excuses for the person they meet. In the end I stopped inviting people over on the weeks she stops with me. I absolutely HATED that and so did she because she loves to talk and talk, (mostly saying the same thing).

    It has taken me a long time to come to terms with it, to say to people I know "This is still my amazing, fulltime working, fantastic mother but now she has dementia". But it is hard, I feel embarrassed still when they are embarrassed at the things she does and my Dad gets mortified.

    On a positive note it has really tested and proved some of my friendships and made them very, very strong. I have one friend now who I didn't use to be so close to who is just amazing with her and we have become very close.

    Strange how is all works, but you are so right, everything you read and see can not prepare you for the depth of emotion you face daily from guilt to anger to embarrassment to disgust with yourself for not handling it better. It is exhausting and there is no break from it.

    Think I must be feeling sorry for myself today - talk about going for an interview, I will probably get all passionate and cry on them!!! I think I need their services, not to work for them!!!

  12. Kate (Skiddy) - apologies for the late reply to your P.M., but check out your Private Messages - I have put some info. in there along with one or two links which might be useful to you.

    The very best of luck with the interview!



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