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Discussion in 'ARCHIVE FORUM: Support discussions' started by ellie 123, Jan 13, 2008.
Could anyone that is on line spare me some time.
Ellie, I'm here. Will I do?
Ellie, I don't know if I'd be much good, but I'm here if you need me.
Thank you hazel, Doreen - I'm just so stressed and the care agency are causing me so many problems. I kicked the carers out tonight because I can't take anymore.
They are just (sorry if my typing is rubbish but I can't sop crying) sending people over at any old time and when I rang to complain tonight they said it's in their contract - they can be late or ea`rly. They also knew about my care package being cut which is more than I did until the carers informed me. I can only assume the manager has got her revenge for my complaint.
Mum is not good tonight and now this I just feel like checking us both out.
I thought a care package was supposed to be a support and not an additional stress.
I know I'm being totally stupid but I just needed to be in touch with someone who understands.
Ellie, I do understand. It's so hard when you're caring for someone and not getting any support.
You've fought so many battles to get your mum with you, and you're worn out. Please don't give up.
Have you thought about Princess Royal Trust? Please give them a ring in the morning. Someone will sit down with you and work out the best way to solve your problems.
If you need to hear a friendly voice, please ring Samaritans. (I used to be one). They won't judge, or tell you what to do, they'll just listen and support, any time, day or night. It sounds as if you need someone tonight.
With love and much sympathy,
Have you got a social worker? I did not have one and was told i did not need one ,my husband had vascular dementia, But i insisted and once i was in the system i did get some help.
As others will tell you ,you need to cry and stamp your feet to get noticed or they will let you carry on unaided as best you can.
I do hope you will feel better soon.
Love Cynthia x x
I haven't really got any advice for you, but I just had to reply to you, I feel for you sooo.. much, i just had to let you know .
Just a thought, are there 'Admiral Nurses' in your area? We found them a great help to us. They are specialist dementia nurses, like Macmillan are for cancer patients. Sorry can't help anymore.
Hang on in there, I know its hell but you have lots of friends here..
Love and lots of hugs,
The advice you have been given from Skye is invaluable,please let us know how you get on.love elainex
Oh Ellie, you're not being stupid. We all reach the end of our tether sometimes and need to be able to speak to somebody who understands. I'm in the lucky position of having a neighbour and friend who's mum suffers from dementia, so I've a built-in audience who understands.
Surely one of the main purposes of this forum is to allow us to vent when it all becomes too much? And to know that people on the forum know what we're going through and can empathise and sympathise.
I can't offer any practical advice - except to echo what one poster has already suggested to try the Samaritans. I've phoned them in the past and, believe me, they really can help.
I'll be thinking of you and send you an enormous hug.
Once again thank you all so much - thank you doesn't seem adequate some times.
One of the carers had remained because as she said it would be mum that suffered if I had to struggle by myself. We had a chat and she told me that the agency used to be a small run nursing agency but had been taken over by this big american company and things have changed drastically.
She said the carers (like herself) who had worked for the previous owners stayed on and put up with how it is now out of a duty to the clients they had been caring for a long time. She commented that it was just a 'business' now and I think that sums it up. She believes the training newcomers get now is totally inadequate and staff turnover is extremely high. I can confirm this because as a new client I have had most of the newbies and some of them don't even know how to change the bed or pad of a bedbound elderly person.
It's a rip off.
I've had something to eat and am about to go to bed because I am exhausted, the house is a tip, I've managed to wash my hair but just don't have the energy to dry it. I'm hoping and praying mum has a quiet night.
I almost rang samaritans tonight and probably would have if I hadn't had the chat with the carer who remained. But you don't know (thinking about it, you probably do know) how much it means to have you all out there and to respond so quickly - I really felt at the end of my tether.
Thank you. Thank you. Thank you. Thank you soooo much.
Ellie hope you are feeling better and more rested this morning.
I too would suggest Admiral Nurses or Princess Royal Trust and Crossroads for help. Let us know how you go on.
Love Linda x
Care package needs reconfigured!
It sounds like you are getting a service that does not meet your needs. Care needs need to take in all aspects of care: bio,psychological and social as well as basic accoutability physical needs.
I'm so sorry you are having such a bad time of things. I hope you are having a better day today.
Reading threads like yours angers me so much. You care and love your mother so much and would go to the end of the earth for her. You ask for a little help in making her life easier and you are treated in this way. IT IS WRONG, as far as I'm concerned. It was nice for the lady to stay with you, it is nice to know that some people do still care. As she said it is just classed as business and money these days, the true meaning of care has gone out of it, as far as the top people are concerned.
One thing I have always felt from being a child is, treat others as you yourself would like to be treat. Depending on the age of a person I would treat them according to the age of a person in my family (if that makes sence). I would help an old person as if it where my Nanna or Grandad and be hoping that if they needed help someone would help them in the same way if I wasn't with them.
My son starts school this September and I am thinking of starting a career in the caring profession, and if I help make just one person's life better I will be happy.
Sorry for going on. As I say I hope you are having a better day today.
Sorry to hear about the rough time you've been having.
I agree with Margy in that it sounds like the care package needs sorting to suit you and your mum ... rather than the providers!
When you are feeling a bit more up to it, can you speak to your mum's social worker? I'd ask for a carer's assessment for you and a full review of your mum's care package. Although I don't think it's suitable for me and my mum at the mo, have you thought about Direct Payments? This would alleviate the need to use the care provider you currently use. You can recruit your own carers and the LA will help with recruitment/salaries etc ... although admittedly it might be a lot for your to think about at the moment, why not sound someone out about it?
You can't keep trying to cope with everything on your own. Clearly what support you've been receiving from the professionals seems woefully inadequate.
I hope you can get something sorted. Will be thinking about you and your mum.
you should not be worried like this.
Contact social services, and/or your social worker, if you have one.You are not getting the support that you need.
TELL them that you want/.need a community assessment.
Have look at this advice sheet.
This is a right.
You can discuss direct payments with them also.
Please let us know how you get on
Yes I'm having a better couple of days thank you.
OK update -
Am having a meeting with care agency manager next tuesday, this could be interesting - just hope it's a good day because I mustn't lose my cool.
Still can't get hold of any of the professionals who dealt with mum's transfer.
Mum's care manager is on holidays until mid next week, she's not much use but I'm hoping she will get me some answers on the cut in the care package - I am now having to assist the lone carer which means I have no breaks at all.
Norman - because I've moved mum from Notts to Kent things are very complicated. In Notts I had a carer's assessment and they sorted out everything for me. But in Kent they refuse to do a carer's assessment - they say they don't do them as they cannot offer anything. I don't have anyone here in Kent and have to go via Notts for everything. They then send me to Kent ss who tell me they can't do anything and that I should contact Notts. And that's how it goes on and on and on.
Local alzheimers were supposed to come today but she is sick.
Another local carer's organisation is coming to see me next Thursday.
That leaves Xrds and Princess Trust which I will hopefully get to later this week.
Yesterday was all taken up with getting mum a new air mattress.
I don;t know maybe it was just the lack of sleep getting to me, with the ME I usually sleep quite a bit and have to pace myself with physical activity.
Once again - you're all great - thank you all so much. I'll let you know how I get on sorting it all out.
love and hugs ellie
this is from the first fact sheet that I highlighted,it is your right.
Under the NHS and Community Care Act 1990, local authority social services departments are responsible for assessing the needs of people who may need care services to enable them to carry on living at home. Services can also include care in a care home if that seems to be the best option. The social services department must arrange any services that the assessment concludes are needed
what a totally ludicrous and unacceptable situation for you. Kent does have to give you a Carer's Assessment. Has your mother had an assessment from Kent SS?
Anyway, I know you're chasing round everybody at the moment, but I'd be inclined to get in touch with my local Councillors (if you don't know who they are, the Council's website should tell you) and scream at them long and hard. Tell them you're going to the local newspaper if they don't get something sorted pronto. Because they are elected, they tend to be a bit more concerned about adverse publicity than Social Service departments.
I'm steaming at the ears with rage on your behalf - not much help to you, I know, but I really do sympathise with your plight.