Piece on talking point for the newsletter

[Rachael D]

Dear All,

Sorry it's taken so long to introduce myself to you. I've finally made it to talking point and am planning to include a piece on TP for our June newsletter.
The angle i was going to go in at by way of introducing TP is to stress how useful a resource it is for all those carers who don't go to support groups, either because they can't because of commitments, or for other reasons.
Are there any of you in this situation, and could you get in touch with me if so. Would you mind being quoted in the piece?
I'm interested in what TP means to you, what are the benefits, how valuable do you think it could be for others?

Any other comments welcome.
I look forward to hearing from you.
Best wishes,

Rachael
Staff writer

 

[Nutty Nan]

Dear Rachel,
I have just written about what TP means to me on Brucie's thread 'soon we'll be 1000'.
What I didn't mention there is, that TP is the easiest thing (for me anyway) to 'do' alongside the caring: I don't need to leave the house (as I would have to do in order to go to carers' meetings), I don't have to make any special arrangements (I just use any opportunity I get to log on), it doesn't matter if I get interrupted 100 times while I am either reading or typing, and I don't have to concentrate on a telephone conversation (which is nigh on impossible while caring for someone with AD).

It is both therapeutic and addictive!

Regards, Carmen

 

[connie]

Hearily agree with Carmen's views. For me the addiction comes because I really want to know what is happening re other carers problems. Here on T.P. we can become involved without it disrupting our time with our loved ones.

I know what a comfort the forum has been to me over the past year. I feel as if I have made many friends, who do not judge and are not embarrassed. They say that a problem shared is a problem halved, T.P. goes a long way to halving our problems. Just to know that someone out there cares. Connie

 

[angela.robinson]

hi racheal.like carmen ,i found TP the easiest way to find information on a huge variety of AD information .there seems to be numerous, meetings and courses to be had for carers ,wich is great for anyone who can actualy attend them ,in my case my husband would not stay with anyone but my self wich had me a virtual prisoner in our home .even home visits from carers support was too stressfull to access so TP was wonderfull for me to use at odd hours ,usually late at night ,when hubby was at last asleep ,i can pour my heart out ,without anyone witnessing the tears ,and fears,though i am sure that it is obviouse,the state we are all in .ANGELA

 

[Anne54]

Hello Rachael
When I get the chance to sit down with a coffee I put on my computer and visit my friends on TP, here I get unconditional support and all the information that I need. I do go to support groups but they are only once a month for two hours, TP is there all the time.
Anne

 

[Norman]

Hi
I have to agree with all your comments about TP.
TP is a rock,an escape,a little world of friends , removed from the cares of the day,something to hold onto and look forward to at at the end of each day.
As so many say they are trapped during the daytime ,caring is a full time job.
Come the late hours TP is there for us to rant, to sympathize,to open our hearts and in return find some comfort with our big family,there is always someone there for us.
I am sure there are many tears shed during those small hours (I can vouch for that) but many gain some comfort and gain some strength to get through the next day.
The best we can hope for is to get through the next day,day by day and Tp will still be there at the end of the day
Kind thoughts
Norman

 

[Brucie]

It's one of those intriguing facts of life that when people [doctors etc] said to me when Jan was less advanced "why not meet other people in the same position" - my response was "I don't want to talk to others like me - I just want to help Jan to stay as normal as possible for as long as possible." I didn't really do the communal thing at that stage.

Since then, through the Alzheimer's Society newsletter, I learned about TP and within the hour was on line to see what it was about. As someone who had worked in IT since the mid 1960s this was a case of "well, I can dip my toe in and withdraw immediately if it isn't for me".

I signed up at once as a member as soon as I saw what was on TP, and started to make my first contributions.

TP provides multiple ways for a person to gain benefit.

Some come on highly stressed and just need to get their current situation off their chest. They appear surprised quite often when others reply to them saying "we understand"

Others come on with a major problem - often in the wee small hours - and ask "what can I do?"

Others write messages and keep deleting them, as they get their thoughts in order. Often just putting something down helps clarify the mind, and posting the message becomes unnecessary.

Others, like me, write messages because they know it will help get their thoughts in order, but want to understand if others understand. If they do and say so, or if they reply and say "I didn't know anyone else had been there, that is helpful", then that helps boost a confidence long blown up by exposure to dementia in a loved one. It encourages them/us to open up more. For me this is important as it helps me come to terms with something that haunts me every minute of every day, even after 15 years. In a way it is - one day - helping open the door to some form of closure. In the meantime, other's replies help in the day-to-day caring.

The members of TP are an outstanding group of people, quite amazingly supportive, and that is probably why we now have members on all of the continents bar Antarctica - and I wouldn't fully write that one off.

A strength of TP is that there are many what I would call 'solid' carers there; people who have been doing it for ages and seem absolutely solid in their knowledge, almost intimidating in that. Yet besides giving endless advice to others, from time to time they too come across situations where it helps them to post their troubles, and that helps everyone. To talk to an expert adviser is one thing, to talk to an expert adviser who is in the same situation is something else, to be able to advise an expert adviser is quite another thing entirely.

 

[Ruthie]

TP has been a major source of support and advice for me while caring for my husband at home and since he was admitted to hospital over a year ago.

I can only reiterate what others have said, that while caring for someone with dementia at home, it is often impossible to communicate freely and frankly with friends, relatives and professionals, as the presence of the person being cared for makes it very difficult to "open up" without upsetting them.

Getting to Carer's meetings can be difficult or impossible, especially if you are dealing with early onset dementia and there are no appropriate respite care facilities in your locality.

Going to TP in the late evening, after (hopefully) settling my husband in bed was something that enabled me to sound off, seek advice and, most importantly, feel that I was communicating with many other people who knew exactly what I was talking about. I too have often shed tears when reading other people's posts or writing my own, and tears were something I didn't allow myself during the daytime as it would have upset my husband.

It has also been rewarding when I have been able to offer advice from my personal experience to someone who may be starting out on the carer's journey, as you realise that all that bitter experience has not been entirely wasted if you have learnt from it and so can help someone else.

Last, but by no means least, I have also had a good few laughs over some postings, when laughs were in short supply.

The honest, open, non-judgmental and caring attitude of the TP members is quite extraordinary, and I feel that I have made some good friends here and it has made me feel much less isolated than I would have been if I hadn't found TP.

Ruthie

 

[Rachael D]

newsletter article on TP

Hi again to all of you who replied to my message re comments on TP for the newsletter.

Firstly, it's been really good reading your replies and I can tell now i;m going to struggle about what to include in the piece I plan to write. It seems there's so much to say about just how much TP benefits you (and I easily get carried away).

I suppose you're all so used to the benefits now but for a new user I can see how valuable it must be. Also, just as I'm logging on here, a colleague I haven't met before asked me how to log on, so it's nice to have introduced someone else to it.

Anyway, back to business. I've emailed a couple of you privately with specific questions, but here;s just a couple more if any of you can respond.

I was curious about how each of you came by TP (some say some don't), since it doesn't seem to be plugged that well.
Are there any particular occasions you remember when you've been helped, uplifted, received good advice you can tell me about? It's always nice to use real examples.
Are there any of you without access to a computer at home, and in which case where do you log on to TP?
Is there anyone out there with dementia using it who can reply to me? I'm interested to hear from as many people as possible who use this facility
The more I can say about how good it is the better the story will read.

Am also going to put up a new thread to try to get some more responses.
Good to hear from you all once again, sorry too it took me a while to reply.

Best wishes,
Rachael