Seriously thinking about leaving the forum.

[Stephen_16071]

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!!

[Rosemary_1706]

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!

[susieq]

Hi Stephen

Sorry you feel that you have to leave the forum 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.

[Lizzie Carers UK]

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.

[bowlingbun]

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?

[Greta]

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.

[Pet66]

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.

[Rosemary_1706]

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"?

[helena_1512]

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.

[StarFish_1502]

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. ☺