support through facebook

[debill]

hi everyone i hope i am not in any way offending by posting this but as i was sat on my facebook today having my usually rant to my friends i suddenly realized that even though they are my friend they dont really understand what i am going through as they dont live the carers role so yes they are supportive but perhaps sometimes think stop moaning lol and its not really a moan its just support and someone to talk to as we all know x so i have decided to set up a support group on facebook this is not maent in no way to take anything off this amazing group , i just know myself though at 3am when your sat there wishing you could sleep i always log onto facebook and who ever is online i have instant chats too , and who knows there may be someone in the same area in the same boat , so once again not sure if i should be posting this on here but feel every bit of support is needed well it is to me so if you are on facebook please feel free to add me share your pictures your storys and your up and downs of our loved ones x thank you Debbie xxx
https://www.facebook.com/groups/520794481304420/

 

[Canadian Joanne]

Hello Debbie,
Although some people may be interested in using Facebook for support, I would like to point out that the security is not there the way it is here. Facebook is wide open and people on it use their real names.

Talking Point has the following to say about the choice of a username:

Because Talking Point is a fully public web forum, a username should never be selected that can identify the person using it. The username shouldn't be a variation of your real first and family name, for example. Neither should the name give any indication of the e-mail address of the person, or the telephone number, or the postal address.

Because TP encourages members to pick a unidentifiable username, there are members who are able to discuss matters they would otherwise feel uncomfortable or nervous about discussing. The 'members' only section of the Tea Room is a place where many members have chosen to discuss matters and ask for advice on very contentious matters. In the Tea Room there is a thread called "The wide awake club" where members who have trouble sleeping can find someone else to talk with. It's not a chat room but can be just as good.

The very openness of Facebook has pros and cons but I don't think it can offer the support and, more importantly, the understanding and identification that Talking Point can.

 

[louas1961]

You can open a facebook account with your username from here (or any username) if you dont want others to know who you are. Many people have more than one facebook account for this reason.

 

[dognecks]

hi everyone i hope i am not in any way offending by posting this but as i was sat on my facebook today having my usually rant to my friends i suddenly realized that even though they are my friend they dont really understand what i am going through as they dont live the carers role so yes they are supportive but perhaps sometimes think stop moaning lol and its not really a moan its just support and someone to talk to as we all know x so i have decided to set up a support group on facebook this is not maent in no way to take anything off this amazing group , i just know myself though at 3am when your sat there wishing you could sleep i always log onto facebook and who ever is online i have instant chats too , and who knows there may be someone in the same area in the same boat , so once again not sure if i should be posting this on here but feel every bit of support is needed well it is to me so if you are on facebook please feel free to add me share your pictures your storys and your up and downs of our loved ones x thank you Debbie xxx
https://www.facebook.com/groups/520794481304420/

its a good idea from paul a carer

 

[kingmidas1962]

Just be careful you don't invite unwanted attention - I work for a drug treatment agency. One of our service users set up a support page on Facebook which got hacked and ended up being used by dealers to try and sell drugs to vulnerable recovering addicts!

Facebook is not as manageable as a forum - just be a little wary. It took us an age to get the page closed down

 

[dognecks]

Just be careful you don't invite unwanted attention - I work for a drug treatment agency. One of our service users set up a support page on Facebook which got hacked and ended up being used by dealers to try and sell drugs to vulnerable recovering addicts!

Facebook is not as manageable as a forum - just be a little wary. It took us an age to get the page closed down

this isnt good at all especially losing a son to drugs
paul carer

 

[Saffie]

I have a Facebook account but never use it. I certainly wouldn't use it to discuss my husband in any way whatsoever. Anyone can read it and why would I want people who have no understanding to comment on what I write.

Here, if you want extra security you can post in the Tea room, where only members can view which is why the thread particular to my husband is there and not on the more accessible Support forum.

I can come here when I am sad, worried, downright miserable or just needing information. I can come in tears, in smiles or when I am just lonely.

If you can find that measure of support on Facebook, great, but I think I have all I need here on TP. love to you all - and thank you. XXX

 

[jeany123]

I have a facebook account but I would never put anything on that was personal about my husband even though I only have family and friends who can read it, but everyone is different I see things that I wouldn't dream of putting on there ,

 

[FifiMo]

Saffie, I hear what you say about the tea room, but you are still open to 27,837 'strangers' reading everything you say about your husband on here. As members all they have to do is log in then log out again.

As to Facebook, it is no different to any other facility on the Internet in terms of being able to be hacked. It is also able to be set up so you are in control of the information that others are able to see, something which you are not able to do on TP.

At the end of the day, everyone is responsible for the information that you put out there and, in my opinion, people often become relaxed and start posting more and more information without giving it much thought. It is like everything else in life. You make your choices and you live with the consequences of those choices and Facebook isn't much different in that regard.

I don't think the argument holds much water with regards to people using their own names on Facebook. You can use any names that you wish just as you can on here. I for example had some concern about the recent thread about people's names on here and,noticed that folks were willingly telling people whether they were their own names etc. this to me was an example of a 'fun' thread where people didn't perhaps realise the potential information that you were all giving out.

Please be careful out there!

Fiona

 

[Saffie]

Saffie, I hear what you say about the tea room, but you are still open to 27,837 'strangers' reading everything you say about your husband on here. As members all they have to do is log in then log out again.

Yes, I realise that Fiona but I would, in general, assume that if somebody takes the trouble to register with TP then they will at the very least have some interest and understanding in dementia - otherwise why would they want to come on here.

We also have very good moderators and administrators to keep an eye on things, Facebook doesn't. You're very much on your own there. My grand-daughter has had her account taken over and it caused a lot of distress, not just to her but to the friends who thought the messages on it were from her.

It is of course, everyone's choice and all I was saying was that TP provides all the support and help that I, personally, need.

 

[jenniferpa]

Just an FYI about facebook and names

https://www.facebook.com/help/292517374180078/

 

[rjm]

Just an FYI about facebook and names

https://www.facebook.com/help/292517374180078/

Yes, facebook is very strict My granddaughters pet rabbits and my niece's pet lizard each have their own accounts.

I really don't think there is much security anywhere you post, be it a forum or a social network site. But that being said, I am also much less concerned about on-line security than many people. I simply accept that I have no control over who reads anything I post on-line, but there is not really anything about me that I worry about others knowing.

 

[kingmidas1962]

this isnt good at all especially losing a son to drugs
paul carer

I'm so sorry to hear that, Paul. I hope I didn't upset you. It was very tricky to get rid of the Facebook page once it had been misused

Yes, facebook is very strict My granddaughters pet rabbits and my niece's pet lizard each have their own accounts.

I really don't think there is much security anywhere you post, be it a forum or a social network site. But that being said, I am also much less concerned about on-line security than many people. I simply accept that I have no control over who reads anything I post on-line, but there is not really anything about me that I worry about others knowing.

...I always say that I wouldn't post anything in a place that can be seen publicly that I wouldn't be happy to be read out on the news! Luckily nothing has - yet

 

[louas1961]

Any account can be hacked ... facebook, here, email accounts !

 

[Miss Merlot]

Fraudsters would not bother with "small fry" sites like this one - what would they get if they did....? It's not like there is any access to sensitive financial details or information to be gained - just a load of people talking about dementia.

I think we can all rest easy in our beds that our TP accounts are not going to be hacked...

Any account can be hacked ... facebook, here, email accounts !

 

[louas1961]

I think you should still take care here the same as any other website.
Also many people put a lot of identifying info on here and if someone manages to work out their password here ............. well you never know and its best to be careful everywhere
You would be suprised at the places hackers like to get into

 

[Miss Merlot]

Well obviously you should be careful, as with anything.

But at the same time, there are different levels of risk associated with different types of site. Caution across the board is always advisable, but kneejerk paranoia towards the whole medium is not necessary either.

Fraudsters will target sites where financial or significant PII (things like social security numbers, banking details etc) is stored - TP is not one of them.

If a fraudster, for the sake of argument, tried to hack my password on this site, from my profile they could see the date I joined, and (if I chose to enter it) a vague location, and after that a plethora of moans, cries for help, and other dementia related conversations - and that's pretty much it. Even if a fraudster then decided to read through every single one of a member's posts to try and piece their identity together from PII (date of birth, address information) inadvertently revealed in passing, it would still be highly unlikely they would ever come close to figuring out from stories about double incontinence and social services who you really are. And even then, there is very little they could do with "just" that information, which after all is virtually "public information" you could find in a phone book or on Facebook anyway!

That is just not how fraudsters work - like everyone else, they are not going to spend hours and days fruitlessly trying to harvest PII on a site like this, when they could go to Myspace and get that kind of information immediately. They go for the path of least resistance to acheive their aims i.e. targetting large sites which contain reams of PII upfront (e.g. Facebook), or financial information (an example would be Amazon).

And no I wouldn't be surprised at all, given that I work in that industry. I've posted a bit on tea room before about keeping your online personal safe and secure.

I think you should still take care here the same as any other website.
Also many people put a lot of identifying info on here and if someone manages to work out their password here ............. well you never know and its best to be careful everywhere
You would be suprised at the places hackers like to get into

 

[Lizjg]

Hi I use facebook, and I agree with Debill that at times it would be nice to be able to chat with somebody who is going through the same thing as you, rather than just having people reply to a post. You can make the Facebook group private so people have to ask to join and unless you are a member you can't see what people have written on the wall. I also think it may help people to feel less isolated as I have read a number of times that people would love to meet other people who live locally and you can very easily ask on facebook if anybody lives in x area. I know that there are memory cafes where you can meet other people, but I never go to them as my dad takes my mum, therefore I never get to meet anybody else in the same situation as me. Personally unless you are affected by dementia I can't really seeing somebody wanting to going a dementia Facebook group.

 

[louas1961]

Well obviously you should be careful, as with anything.

But at the same time, there are different levels of risk associated with different types of site. Caution across the board is always advisable, but kneejerk paranoia towards the whole medium is not necessary either.

Fraudsters will target sites where financial or significant PII (things like social security numbers, banking details etc) is stored - TP is not one of them.

If a fraudster, for the sake of argument, tried to hack my password on this site, from my profile they could see the date I joined, and (if I chose to enter it) a vague location, and after that a plethora of moans, cries for help, and other dementia related conversations - and that's pretty much it. Even if a fraudster then decided to read through every single one of a member's posts to try and piece their identity together from PII (date of birth, address information) inadvertently revealed in passing, it would still be highly unlikely they would ever come close to figuring out from stories about double incontinence and social services who you really are. And even then, there is very little they could do with "just" that information, which after all is virtually "public information" you could find in a phone book or on Facebook anyway!

That is just not how fraudsters work - like everyone else, they are not going to spend hours and days fruitlessly trying to harvest PII on a site like this, when they could go to Myspace and get that kind of information immediately. They go for the path of least resistance to acheive their aims i.e. targetting large sites which contain reams of PII upfront (e.g. Facebook), or financial information (an example would be Amazon).

And no I wouldn't be surprised at all, given that I work in that industry. I've posted a bit on tea room before about keeping your online personal safe and secure.

Obviously i know nothing lol
However i also have knowledge of this industry so i wasnt talking without some knowledge