Help us share the difference Dementia Talking Point makes

Discussion in 'Alzheimer's Society notices' started by SophieD, Jul 17, 2019.

  1. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,042
    London
    Have you built a circle of friends through being part of Dementia Talking Point? Did you find our community a huge source of information and support when you or a loved one was diagnosed? Maybe you found Dementia Talking Point to be a lifeline at a particular time since being diagnosed? Perhaps you turned to others on the community when things got too much and received vital support?

    If you’ve found Dementia Talking Point, or any of our services, to be helpful during your experience with dementia, we’d love to hear your story. Our Media team is planning a campaign later in the year focusing on the services we provide and how valuable they are to people with dementia and their families and carers.

    If you’d like to share your story with the press to encourage others to access Talking Point or to raise awareness of Alzheimer’s Society services, please let us know a bit about you and your story by adding a comment below!

    If we’d like to know more about your story, a member of the Dementia Talking Point team will contact you privately. We’ll give you the opportunity to ask questions and agree what you’re comfortable with. We’ll also be able to provide more information about how you could get involved with the campaign, how you could share your story and help to put you in touch with the Media team at Alzheimer’s Society.

    Thanks,

    Dementia Talking Point Team
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,714
    Male
    Bristol
    I found Dementia Talking Point about two and a half years after my partner was diagnosed woth Vascular Dementia, and about a year after that took a serious downturn, through chatting to a woman I met on a Carers support Centre course. At first I did stay in the shadows and then slowly found a more light hearted thread to chat on which boosted my confidence. Several of the old regulars are no longer active on here, but we keep in touch on social media.
    The amount of useful advice, including simple things like refocusing on the possibility of a UTI when I was panicking about a change in OH's condition, has been valuable. Over the winter months my OH's health was poor and things got on top of me emotionally. It was a CBT therapist working for the Dementia Wellbeing Service who reminded me that DTP was as valuable as the Samaritans as somewhere to go for support in a crisis. I started two main threads at different points and the opportunity to offload feelings in itself helped to calm me down. So many wonderful people offering good advice and often just empathy helped to make me feel less isolated. I probably didn't take all of the best advice on board fully, but appreciated it was there and it all helped to find a way through those emotional and mentally draining times.
     
  3. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    It is an incredible resource and unique in content. When I started to suspect my mother had dementia I read everything I could on the subject. (And I mean everything!) But the 'medical' descriptions of the disease didn't give me enough detail somehow, though I did learn a lot. One day I came across TP and it was a complete revelation - real people describing real experiences. I remember reading all @Ann Mac 's How Bizarre thread and was just stunned. Ann's MIL could have been my mum's twin! The behaviour, the changes in personality, the bizarre conversation loops, even the content of some of the conversations! Reading that thread (thanks Ann!) helped me so much. It confirmed I was right about my mum and that I wasn't just imagining things. It made me confident enough to press ahead with things. (Didn't happen - mum had a fall, ended up in hospital then CH - the rest is history...)

    For me, it was reading and finding out about all the subtle changes in a PWD that made the difference, not the major ones that the 'Seven Stages' tell you. All those tiny everyday things, easily dismissed individually, that add up to a whole lot more - that's what this site tells you about. And the support here for carers is second to none.

    TP should be required reading for any dementia professionals.
     
  4. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,042
    London
    Thank you so much for sharing your stories about how Dementia Talking Point has helped you during your experience with dementia @nae sporran and @Jaded'n'faded.

    If anyone else would like to share your story with the press to encourage others to access Talking Point or to raise awareness of Alzheimer’s Society services, please let us know a bit about you and your story by adding a comment below!
     
  5. Loisand

    Loisand Registered User

    Dec 25, 2017
    121
    I found TP just under 2years ago, when by the death of my dad we as a family knew that mom needed 24 hour care, but we didn't want to go the care home route straight away, firstly we needed a diagnosis, reading on TP showed us the way forward on that, at first I mainly was in the background just reading all the threads, gleaming g alot of useful information from people who had and was going through what we were, every now and then I would ask a question and always got a valuable answer. Then mom had a fall broke her hip and everything turned upside down, TP is so valuable to me for getting answers, picking the brains of others, using there advice to better moms quality of life, I feel like there is someone out there listening and advising, yes I can have a rant as well if I'm having a bad day with mom and again there are people out there that put a calmness on a crisis, so thank you TP for being here, thank you to all the contributors of this forum, and thank you TP for your advise sheets that are in plain English.
     
  6. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,471
    East Sussex
    Mum was diagnosed six weeks after becoming a widow. All I knew about Alzheimers was that it was the one thing that she feared. She was a dementia nurse.

    I read every leaflet, I even asked her doctor where I could find support groups, there had to be some, but he waved me off telling me to look on line. Helpful he was not

    A random google search led me to DTP eighteen months later, I started reading. By the time I’d finished, I felt equipped to carry on. The confidence gained by knowing other people, equally “unqualified”, were caring and probably doing a better job than the professionals, that was invaluable

    I learnt how to spot UTI’s and how to force the receptionist to get the test done. I learnt to walk away from arguments and I definitely learnt to always buy cake. DTP is full of tiny bits of information, little nuggets that I stored away and used as time went on

    My first post, a million years ago, started my acceptance of Alzheimers. DTP helped me step into mums world, comments and suggestions guided me through the maze of non existent support. The people who care enough to share their stories and those same people took time to offer me support, without which I wouId never have come out the other side

    DTP is more than just a site where you can find answers if you search enough. It’s a place you can visit. It’s like bumping into a friend and sitting down for coffee and offloading to a good friend. No judgement. It’s a place where you are listened to.
     
  7. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,042
    London
    Thank you @Loisand and @Sam Luvit. Although your experiences with dementia differ from each other, it sounds like Dementia Talking Point has been able to provide you both with information, valuable answers to any questions you had, and much-needed support.

    Thank you so much for sharing your stories.
     
  8. Vic10

    Vic10 Registered User

    Feb 18, 2017
    51
    Don’t know where I would be without TP. It answers all my questions, supports my wobbles and is a friend whatever the need!
    I have no idea who everyone is but I wish everyone dealing with this well and everyone who plays a part in putting this together huge thanks!
     
  9. Ann Teak

    Ann Teak Registered User

    Mar 3, 2019
    18
    I have just received your email asking me for my views on Talking Point.
    Although I have not used this site much yet, when I have I was so grateful to the very quick responses I got from members.
    I try to thank them on the thread and I hope that I have done that correctly.
    My husband had his first stroke nearly 12 years ago. This left him with aphasia. So from early days he has been confused. Now it is Alzheimers/vascular dementia and life is much more difficult.
    I can see on line that I am not the only one who is trying their best to make life as comfortable as we can for our partners and parents.
    It helps me to not feel so alone and that others understand.
    The one thing this has taught me with my husband is patience. Something I did not think I particularly had, but staying calm calms him down and that is what is needed.
    This blog is amazing and thank you again for being here for me. I have a feeling I might need it even more now.
    Ann Teak
     
  10. Easy does it

    Easy does it New member

    Jul 19, 2019
    1
    Good day, I'm a 58 yrs., old male, greatful to the 'Higher Power' --- of my understanding, for my dear wife (of over 36 yrs.,), two wonderful grown & married chieldren & two adorable grandsons 9 & 11, on 11/2008 I was Dx with the early stages of AD, since then I been on Namenda XR 28, Aricept 5 MG & recently I participated in a "Drawing / Relaxation music / Breating excersises & more ..." at my neurologist's office [it was a wonderful experience]. Yes folks, it has not been easy, I experience fear, at times irritability, anxiety & depression. But through it all I know the 'Higher Power' of my understanding is by my side 24/7, I " tool" that has help me a lot since at age [33], I first attended a fellowship meeting where 'ex drinkers' drank café, talk about them self & expressed empathy, sensitivity Friendship & were not judgment toward others, in these fellowship meetings I learn the effectiveness of the "Serenity Prayer", the things that has help me a lot -- having, the support of my dear family & the fiends were I go regularly to drink café, play cards & dominos & try every day to be "pro active", for many yrs., I have sought "professional help", " it's one moment at a time / baby steps / easy does it ", the're is a saying in spanish "Lo que no te mata Re hace mas... fuerte" -- what dies'nt kill you makes you more ... STRONGER, always buckle up, be safe, it's only one moment at a time. have a great day together with family & friends
     
  11. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,035
    Merseyside

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