I would like to explain

[TinaT]

As my husband has Lewy Body Disease Helen, I too came onto TP late because he didn't have Alzheimers disease. When I did start to post I felt I was actually on the wrong site. It took me a while to realise that people were posting with a variety of related diseases and not just about Alzheimer disease.

We have had a few threads in the past where posters have asked if the Alzheimer Socity could change their name in some way to encompass all the dementia related diseases into their title.

xxTinaT

 

[Tender Face]

through Talking Point Alan was enabled to have the best life possible because of what I gained from you all.

Can I ditto that comment replacing 'Mum' for Alan of course in my circumstances?

Hi Helen (yes I’m awake at silly o’clock again!)

Funny, I posted in a very different section almost encouraging people to ‘blow their own trumpets’ (in a campaigning way) and to share their successes to encourage others, but I guess the same sentiment applies here.

If those of us who have tackled obstacles and come through chose not to share .... what hope for other members and especially newcomers to TP? It’s not about ‘blowing trumpets’ (OK then, didgeridoos!) ... it’s about sharing ‘This worked for me/us ...’ I always hope if someone posts a problem there might be 6/10 or more different views and ideas on how to tackle it. If just one of them works, then that is what TP is about for me ..... everyone is unique ... the sufferer and the carer .... what works for one might be a million miles from a solution for someone else – but it’s that ‘pooling’ of ideas and the hope that one of them might just work and make someone else’s experiences just that teeny-weeny bit easier and feel less isolated with a particular problem that matters?

None of us have to agree, share the same views and certainly not the same circumstances ..... but to not blow the odd trumpet would be to deny others the benefit of experiences ......even if they sometimes went horribly wrong so others can learn from mistakes ????? ... and more importantly – when they went wonderfully right ...... and might help someone else learn from successes?

Karen, x

 

[Christin]

Dear Helen, I have read your post and wonder why you feel the need to explain anything at all

I don't read every post, some I find too hard to read, but I wonder if you have read something that has upset you. I feel that we all share our experiences and offer help and advice where we can. No one knows everything and I have welcomed your advice and support many times. So please don't ever think you have to to explain anything and keep posting!

xx

 

[miss cool]

Hi Helen you silly billy i just read your thread . to me you sound like a very careing person. stay possitive becouse you are.
happy new year love miss cool..xxxxxxxxxxxx

 

[Helen33]

you silly billy

Hi Miss Cool, This brought a real smile to my face.

Thank you everyone for your comments. I am interested myself as to why this kind of worry became quite strong in me that I needed to talk to you all about it. It may be because some of you are so struggling to get the help that is required. It can be a really arduous struggle that requires so much of us carers at our most vulnerable times. The struggles can be lengthy. Maybe seeing so many people struggling to get what is required in order to help those they care for and themselves (against a current trend to cut services) has something to do with it. I really don't know. I do know that Alan had this life because of the help that we given and without it there would have been no chance. I was given help but I had to put a good case each time to get the help - it was really hard work and it was continuous work because the care needs kept changing.

Dear Karen and Tina,

I seem to have missed the thread you mentioned I will go take a look. I always feel my campaigning days are over. Along the way I think I found a different way of getting what was needed to the ways of the past. I believe the AZ Society is very interested in the 'name' issue and so I just rest and trust that others having this very much in mind, are well place and determined to address this matter.

Some of the services I got on the care journey were inadequate then and it was just the skill I learnt through TP that enabled me to get what was needed. The S&L therapist who is excellent was employed for both city and county and she was employed for just 1 day a week in that role It was never adequate then especially as I believe that all newly diagnosed people with FTD should automatically be given a S&L therapist but now services are being CUT.

Anyway enough for now. I needed to say what I did originally and I am pondering myself now as to why I began to feel like I did.

 

[sad nell]

Helen, you just being you has helped so many , your wit, intelligence and caring nature not only helped Alan to have the best life he could, you encouraged so many of us and i would like to thank you. lovePam

 

[Bronwen]

Hi Helen..like all our other TP friends I echo their sentiments and hope you are now reassured. I have had so much help and friendship from you, I can't understand how you should feel like you "blowing your own trumpet".

I have been married to Trevor for 52 years and I take that as my yard stick...if I don'tknow what is best for him, then no-one does..I have brought Trevor home for a few nights,much against some people's advice, but we both enjoyed it and gave us a bit more quality to our lives..so I am going with my gut instincts
to care for him and watch out for him as much as I can.

love to you Helen and a peaceful New Year.

Bronwen
x

 

[cragmaid]

Hiya...Misscool got it right you silly billy you. No Apologies and no explanations. All that you did and do is to help others. This is not a crime and even if it was, I'd still say thank you.x.