Seriously thinking about leaving the forum

All about caring
1

I’ve been away for over a week in protest. This forum has helped me more than I can even start to tell you.

It would be lovely if we had carers in charge of the show rather than profiteers, I would love to hear Michael and Lizzies stories about how they cared for family members.

If this is my last post can I shout out to BB, hard as nails! Melly compassionate and lovely. Rosemary full of ideas, Londonbound respect. And last of all Pet. Dementia is a cruel thing nobody should face it alone.

But I guess I’m going to have to due to this board being rubbish!!

2

Never mind their stories, through michael and lizzie, this forum is possible. I expect we’ll be here if you need an opinion, or five. I’ve missed you the last week. You’re doing a fine job!

3

Hi Stephen

Sorry you feel that you have to leave the forum :frowning: But I’m glad that you have found the forum useful whilst you’ve been with us.
(Is it anything in particular that has triggered your decision ? Would you like to PM me with details so that I can look into it?)

To briefly reply on a couple of your comments.

  1. Michael & Lizzie do both come from caring backgrounds (as do a great number of CUK’s staff), but it is not my place to elucidate further - it’s up to them if they wish to share (the same as with every other member on this forum).

  2. The day to day running of the forum is down to the volunteer moderators, Michael & Lizzie are there to validate our decisions and guide us when necessary. We all are either caring now or have cared in the past. Both myself and Anne001 cared for our Mum’s, who had dementia, until they eventually passed away. Rosemary cared 24/7 for her husband (also dementia) until it became necessary for him to take up residence in a care home and Melly1 cares for her son with learning difficulties, as does No1Mum.

4

Hi Rosemary and Sue. Thanks for responses and kind words.

Stephen - It was heartening to read that this forum has been a great source of help for you. And I’m sorry to hear that you’re considering leaving the forum especially having been a member for many years. As Sue mentioned, pls PM the mods/ myself any details so we can look into this.

As Sue mentioned, I do have a caring background. However, because I am a Carers UK staff member, my identity and the person I cared for will be compromised if I shared my experience and I will consequently breach our community guideline: “You should also not post any identifiable information about the person you are looking after”

I hope that provides some explanation.

5

I’m dismayed that I come over as “hard as nails”!

I try to warn others of the many pitfalls I’ve fallen into, especially trying to be a good daughter and doing what my parents wanted me to do, at the expense of my own life.
After I was diagnosed with a larger cancerous tumour on my right kidney, and needed urgent life saving surgery, and still might not live for more than a year, I wrote to Social Services and mum’s GP and said that my consultant had said that I must NEVER EVER care for anyone ever again.
Even that didn’t stop them badgering me to look after mum. Only hours out of hospital, with a 12" wound, not yet a scar, I was summoned to mum’s to sort out her front door. The GP told me I had to care for mum over Christmas despite the fact that I couldn’t even look after myself, my husband had to take time off AND our son with severe learning difficulties.
The GP told me to contact Social Services, they told me that they weren’t taking on any new referrals until the New Year!

Clearly my own life and my own health just didn’t matter to any of them. I was merely a way of solving mum’s problem.

Partly to humour me, the GP then sent mum for an x ray, which revealed that mum was in so much pain because
SHE HAD A BROKEN LEG!

Now I know that if I don’t stand up for myself, no one else will, in fact I’ll just get used and abused until I die.

In total, I’ve had TEN carees, now I just have my son with learning difficulties part time to care for directly.

My advice is given to encourage everyone to stick up for themselves, because you are the only one that will. Don’t ever think that your wellbeing is being considered by anyone, don’t wait for anyone to accept carers or residential care willingly, because the sad truth is that they won’t.

Long before I had a disabled child, I worked in various capacities helping others, that’s my nature.

Don’t think of me as “hard as nails”, just think of me as sticking up for the “under dog”, because surely that’s what we carers are?

6

BB. I read that as meaning your advice is ‘hard as nails’, meaning ‘on the nail’. Can’t imagine you come over to anyone as hard.

7

No BB, you are not as hard as nails!! Otherwise you wouldn’t bother to go the extra miles to help others, myself included. Wise, and often straight to the point, which is needed. But there for us, with hugs a plenty.
((( Hug)) for you from me.

8

Bowlingbun, you cut to the chase and offer sound advice and opinions, along with hugs, based on your knowledge and experience. You help prevent others from reinventing the wheel. After all, we come here for advice, a sounding board so what value would there be in replying “Hard to say, or Difficult to know”?

9

BB you are a true diamond and cut to the chase with your advice because you have been there gone there and got the T shirt! I have gained a huge amount from your postings. .

I am sorry Stephen that you are leaving - at the end of the day you must do what is best for you.

10

BB, yours is the most patient, persistent voice on the forum in support of exhausted, browbeaten and undervalued carers. I too have learned a lot from your advice. :relaxed:

11

I would like to agree with the above posts. BB you are not hard as nails. You are sensible, kind, practical and helpful to so many forum members. You and Jenny gave me such useful advice when I was caring for my mum and husband.

12

Stephen sorry to hear you feel like this. I too care for an elderly Mum and find your voice useful, so I hope you won’t go.

I too have benefited massively from advice here. Particularly from the people you mentioned, (BB - def not hard as nails, but definitely responsible directly for me being in a better position now than I was 3 years ago). And you contribute to that too.

A forum of this type is not easy to run to ensure that a hugely different group of people are not offended or upset. We are not always going to agree. I’ve always found Lizzie to be kind and empathetic, but she does have a difficult job to do to ensure that guidelines are met. Not always an easy balancing act to weigh up the needs of all forum users.

I really hope you reconsider Stephen.

Best wishes - Sally

13

Stephen, if you really want to leave this Forum, then that is your decision. You are the best judge of your personal life, your time, your responsibilities as a carer.

But we’ll be sorry to see you go.

I was entertained to read your recent post (though I did not respond to it at the time) about an officious receptionist who refused to ask a visiting doctor to give you a flu jab while they were there. “Only a carer” indeed! As you rightly said, if the carer goes down, what happens to the caree? One of the great aspects of these forums is that advice and observations expressed is helpful to anyone reading the post - not just the person who started the thread. Many more will read than respond.

Lizzie has already responded why the moderators do not get too involved. I am slightly puzzled by what you mean by profiteers. Anyone trying to use this forum for commercial gain does not last long. I have reported inappropriate posts two or three times to the moderators and these posts have been promptly removed. One was trying to use the forum as a free advertising site for a questionable product.

Come to that, I have had one of my own posts censored by the moderators - apparently a comment I made was too blunt and could have caused upset. It shows that Lizzie and Michael are on the ball and doing their job. It is true, I can be quite blunt when I am trying to drive over a point. I generally re-read my posts after drafting, and sometimes soften the language. And this brings us to another point made.

I could not have put this more succinctly myself. I am saying this for the benefit of anyone reading this thread.

Bowlingbun has had a tough life and spent many years looking after many carees. She has encountered countless problems and learned how to overcome them. We should be overtly grateful to her for giving us the benefit of her experience. I frequently feel humbled by sheer volume of her practical experience and knowledge the workings of social services, the Health Service and other caring-related organisations. I don’t know how she finds the time to be a carer and also such a prolific contributor to this Forum.

I think that, like me, she sometimes uses firm language to drive home a point. There may even be a difference of opinion on occasions. That is healthy; we can examine various points of view and decide which best suits our individual circumstances.

14

This thread is now locked as a result of a forum member reporting a post that breached our Community Guidelines which has now been removed. As a prerequisite of joining our forum, forum members agree to follow our Community Guidelines and be respectful. I’ve copied the below points from our Community Guidelines as a reminder for everyone:

Our volunteer moderators will be looking out for any posts which do not follow the forum guidelines and will remove them if necessary. They will inform the staff team if the see any posts which:

• contain insulting personal remarks, are offensive, abusive or libellous or act in a way to cause harassment
• make comments that misrepresent or damage the reputation of Carers UK, whether on the Carers UK forum or on any other public forum or site
• are not constructive to the overall purpose and mission of Carers UK