A new stage in my life...................

[garnuft]

I have been asked if I will stop using TP now Dhiren has died.

It isn`t even 6 weeks yet!

It shows how little they understand what dementia is about and what TP is about.

By whom, Sylvia?

I don't think it will have been any part of the Alzheimer's Society or the Talking Point team.

People are so thoughtless. Someone asked me what I was doing with my daughter's cot within a month of her death.

Beggars belief.

Pity them for their insensitivity and please, please, please do not deprive the members and guests on this forum of your wisdom, advice, support and comforting presence. XXX

 

[nellbelles]

Can you direct them to me please, I have a few choice words I would like to say to them.

Love xx

 

[Izzy]

I have been asked if I will stop using TP now Dhiren has died.

It isn`t even 6 weeks yet!

It shows how little they understand what dementia is about and what TP is about.

Oh my God, Sylvia. I can't believe what I'm reading here. How crassly insensitive apart from anything else. As well as the continuing support you may find from using TP there are hundreds of users who will continue to be help by your wealth of wisdom, insight and experience.

I am (almost!) speechless!

 

[nitram]

Some clarification is required.

The request may have been originated by the Alzheimer's Society or it may have come from a member, possibly a dementia sufferer, who was asking in the hope that Grannie G would not leave as they valued her input.

 

[Skye]

Crass would be my word too, Izzy.

Over three years since I lost my lovely John, I still check in regularly, mainly to keep up with the people who were so much part if my life for so long. Visits take less and less time, as the people I knew gradually fade away. Maybe they too are still silently visiting?

But the fact remains; so much disappears from our lives when we lose the one we love, TP provides some stability and continuity for us as we come to terms with our bereavement, as well as much-needed support.

I'd also question the word 'use'. Yes, of course there are times when we need that support, but is there any one of us who takes without giving back? We are all carers, not users.

Sylvia, I don't know who said that to you, but you are right. They know nothing.

 

[sunray]

I am still here 17 months out from Ray's death. I have a thread which is about me as a recovering widow. I still feel attached to those I have grown to know and love on TP. Why would I leave my friends here?

Stay on Sylvia. You were a carer for so long. Just because you are a widow now is no reason to leave. You give others such sound advice, such love and comfort you would be such a loss to us all.

Sue.

 

[Rageddy Anne]

I hope this was a dreadful misunderstanding, Sylvia. You are such a dear friend to us all, we'd miss you terribly! Wherever you went, if you went, I'd follow you if possible. It's UNTHINKABLE that anyone would have asked you to leave...IT MUST BE A MISUNDERSTANDING,I agree with Nitram.

 

[Noorza]

I have been asked if I will stop using TP now Dhiren has died.

It isn`t even 6 weeks yet!

It shows how little they understand what dementia is about and what TP is about.

Sylvia you are a huge part of TP and were years before I'd even heard of it. I hope you always will be. Some people just don't think before they speak.

 

[LYN T]

I have been asked if I will stop using TP now Dhiren has died.

It isn`t even 6 weeks yet!

It shows how little they understand what dementia is about and what TP is about.

No! No! No! Sylvia

We all need you.

Take care

Lyn T

 

[jeany123]

I have been asked if I will stop using TP now Dhiren has died.

It isn`t even 6 weeks yet!

It shows how little they understand what dementia is about and what TP is about.

Oh Sylvia nobody on here would ask that, we all understand so well,

You are a welcome part of TP, xxx

 

[jaymor]

Where the heck has this request come from? You have given so much to this forum and we know you will continue to support. I can't get my head around this request. Unbelievable.

TP without Grannie G is unthinkable.

Sylvia was it a question as in " will you be leaving TP now"? Or was it a command, leave TP now.

Whichever please don't go.

Love Jay xx




Sent from my iPad using Talking Point mobile app

 

[retiredcopper]

I'm wondering if it was one of your friends or family members that asked you this insensitive question Sylvia? I know that the same was asked of me regarding the Macmillan Forum. A friend can't understand why I still occasionally pop into it after almost 5 years in remission. They, mistakenly, think I'm being morbid but they don't understand how much one identifies & makes friends with fellow sufferers & how you want to help support them. I'm a lucky survivor (cross fingers) and if I can help someone else along the way I will continue to pop onto the Mac forum.

I've learned a lot on TP from all the wonderful members - advice that I have been able to put into practice while caring for my MIL. I intend to 'pay it forward' long after MIL has left this cruel disease behind. So don't pay any heed to those who don't understand your position Sylvia - please stay & keep us company - for our & your benefit!

Angie x

 

[creativesarah]

we need you and love you sylvia!

 

[Saffie]

As nitram has said, I do think we need clarification as to the origin of this question before we throw out toys out but it is puzzling. I really don't think it has come from TP or the AS unless it was just worded insensitively.
Many others here remain after losing the person they care for so it would be unusual.

I have met people here whom I now regard as friends, some of whom I have met, Sylvia amongst them - and some I haven't - but if my circumstances were to change, I would still regard them as my friends and would want to keep in contact with TP.

I hope you are not too upset by this Sylvia.
We want and need you to stay here.XXX

 

[nitram]

What worries me is that the question may have come from a TP member who suffers from dementia.

They may have been wanting assurance that Grannie G would still be an active member as she is no longer a carer or sufferer, they may not have phrased the question very well - remember this person has dementia.

If this is the case the member has received accusations of being crass,... , hardly peer to peer support.

I tried to calm things by saying clarification was needed and hinting at the above but it did not work.

 

[jeany123]

All that I see on here are messages of support for Sylvia I do not see anyone being called crass or accused of anything,

 

[nitram]

Review the posts:-


Tell "them" to butt out.

How crassly insensitive

Crass would be my word too,


As I said in my hypothesis - hardly peer to peer support.

 

[cragmaid]

Once again an innocent post has stirred righteous and also defensive indignation. Sylvia did not mention from whom the question originated. I, rightly or not presumed that it had come from an outsider, for the simple reason that it would NEVER occur to me that it could have come from anyone having any links with TP.
I suspect that Sylvia might now be wishing she had kept the hurtful question to herself rather than stir up a storm in a tea cup, and I ought to feel sorry for expressing my support for her by saying the questioners ought to "butt out" , however, since Sylvia herself said

It shows how little they understand what dementia is about and what TP is about.

I believe that "they" really were outsiders.
Sorry Sylvia if my response has caused you upset.
Love Maureen.x.x.

 

[Grannie G]

I`m so sorry if I`ve mislead anyone.

These comments were made by a relative and a couple of friends, all having no experience of dementia or TP or even loss, who think I can just switch off from what has been my life for 15 years of dementia and eight years of TP.

I only posted to illustrate how ignorant people can be who have not had the experiences those of us on TP have shared.

I have been out all day and was quite shocked at the upset I caused, especially the suggestion the comments might have come from from anyone on TP or the AS.

Please accept my apologies . I will try never to post anything of this nature again without giving a full explanation.

Sorry. Sorry. Sorry .Sorry. Sorry. xx

 

[jeany123]

No need for apologies Sylvia, it was what I thought when I first read it xx