Help us share the difference Dementia Talking Point makes

[SophieD]

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

 

[nae sporran]

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 Several of the old regulars are no longer active on here, but we keep in touch on social media.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.

 

[Jaded'n'faded]

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.

 

[SophieD]

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!

 

[Loisand]

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.

 

[Sam Luvit]

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.

 

[SophieD]

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.

 

[Vic10]

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!

 

[Ann Teak]

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

 

[Easy does it]

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

 

[Cat27]

Welcome to DTP @Easy does it.

 

[Whisperer]

Dear Sophie

I have just seen and read this thread. To explain I dip in and out of this forum. People have given me advice when sought, which has been very helpful. Just knowing you are not alone is reassuring. Believe me loneliness has become an unwelcome friend I have learnt to live with. Perversely when I am having a bad time, emotionally down period coming here still helps to recharge the batteries. Seeing how bad things are for others let’s me get a better perspective on my situation and a kick to do better. Suddenly repeated questioning, zero short term memory, comments my mum thinks being stated publicly when better kept private, being infrequently mistaken for my dad or grandad (both long dead), become trivial. Time to get out of my self pity circle and get moving again. Plenty of folks got it harder than me, a strange kind of pick me up and I can learn from them. I have had a lot of advice getting LPAs, getting through her two cataract operations, how to best deal with my mum with the compassionate caring guidance. I am not a saint yet (!!!!) but that has really helped me. My mum has never been on this forum but has benefited from it.

As mum has slowly got worse I have developed in experience and knowledge. The forum increasingly feels like home, I more fully “belong to it”, I do not feel like an intruder on the problems of others. A few years ago my mum’s condition was not so developed. I felt a bit of a fraud coming here. Not sure I have got that down correctly, but as matters developed I realised this forum was now part of my life, it will continue to grow in importance. I guess what I am trying to say for me it was like starting to ride a bike. Stabilisers, then a parent holding you, then you have arrived peddling hard. It kind of grows on you as the journey goes on.

I see Canary posting and always have a look. Never met the lady but very helpful to read her posts. There are others. A club where you do not meet people physically, but share information, ideas and emotions in a very open and supportive way. Hope my comments make sense, I am after all is said and done just a bloke.

 

[lis66]

Talking point has been my lifeline I feel I am among friends who truly feel and experience every emotion there is ,living with this horrundeous illness the only support I get is from DTP as I am an only child caring for my mother with AD ,no one understands what we are going through unless they have lived it ,thank you DTP for being there for me x

 

[DesperateofDevon]

Yes yes yes!
I had read this forum for years & recently joined when I realised that OH & children had reached saturation point & didn’t really get it...
oh my .... my sanity is now on an even keel thanks to having an outlet for all these mixed emotions you get on this horror of a rollercoaster ride that is dementia.
The support & information available cuts through the fug that accompanies trying to care/ get care etc for a PWD

Mostly being able to empathise & try & help others in the dementia whirlpool of life makes life seem better, along with the amazing knowledge base & wealth of experience other forum users have.

Bonus - the great sense of we are all in this together

 

[Ohso]

The knowledge base on the forum is invaluble, for me it was the early stages, pre diagnosis and even pre me realising what was happening to my relationship with my mum, I felt like my world was falling around my ears and I didnt know why or what I could do, and found out from the wonderful people here in the nicest possible way that if it could be dealt with badly I was certainly doing it, what a learning curve.

Without outwards signs to see and no experience of dementia mums behaviour was so far removed from anything I understood dementia to be that it took me ages to even consider it, first thinking it was diabeties related or some mad manipulation but mums friends and feeling totally isolated and excluded from her life as it all spiralled out of control I contacted her GP, the police and a Dementia Crisis helpline, yet it wasnt for another 6 months that eventually mum was admitted to hospital that she eventually got the help she ( and I ) needed.

Since I found this forum while trolling the internet in desperation after every visit to my mum ended in anger and frustration and often tears ( mine) and dominating every waking moment, I couldnt concentrate at work) it has been a constant source of support, information and understanding, having read literally hundreds of posts and watched endless videos I now feel that I am keeping step with the changes as they happen instead of the three steps behind that I felt a year or so ago, such were the daily challenges.

I have gone from a weepy, angry, resentful ball of guilt & self doubt both loathing and loving my mum in equal measure to feeling confident enough to have her come to live with me ( with amazing carers)

I can not thank everyone enough for sharing all thier experiences and knowledge, I have cried, ranted, laughed and not once been judged. xx Priceless.

So, ask away, I would shout about this forum from the rooftops and make it compulsory reading for every health/social professional remotely linked to anyone over the age of 50