Carers Week starts Monday 18th June. The theme this year is In sickness and in health.
Check our website next week for the release of a hard-hitting survey of over 3000 carers looking at the effects of caring on health. There will also be more information about the many events taking place around the country and a new web story on carers each day of the week.
In the meantime, you can read more about Carers Week on their website at http://www.carersweek.org
Have found the Parkinson helpline very helpful and understanding but when I rang a carers helpline about my mother who has dementia I got lots of suggestions but no real help.
The suggestions all involved my mother agreeing to things and she says no to everything.
The suggestions all involved my mother agreeing to things and she says no to everything.
Hi mandybike,
I'll pass your compliments on to the helpline team. I'm sure they'll be glad to hear it.
I'm sorry to hear you've had that experience on a carers helpline. If you give another ring to ours, they might be able to suggest another helpline for you.
I'll pass your compliments on to the helpline team. I'm sure they'll be glad to hear it.
I'm sorry to hear you've had that experience on a carers helpline. If you give another ring to ours, they might be able to suggest another helpline for you.
Hi Mandybike,
Have you had a carers assessment? This is a statutory right and is done by social services. This is to assess your needs and does need her agreement. This way you might get some local help or information as yours is a very common scenario.
My mother had no illness but lived to nearly 100 and for a long time wouldn't even have a phone. Actually, I say she had no illness but now I suspect she had a mild form of PD.
Have you had a carers assessment? This is a statutory right and is done by social services. This is to assess your needs and does need her agreement. This way you might get some local help or information as yours is a very common scenario.
My mother had no illness but lived to nearly 100 and for a long time wouldn't even have a phone. Actually, I say she had no illness but now I suspect she had a mild form of PD.
So let's have a round of applause and a bouquet for carers everywhere. My wife has been an absolute rock. I dare not venture out without her for fear of tripping and stumbling.
I must also mention that when I did an hour's "tin rattling" outside Tesco a few weeks back I was amazed and touched by the generosity of people. One woman approached me in tears, told me that her husband has Parkinsons and then proceeded to stuff a £10 note into my tin. So my definition of a carer is "one who cares" In both senses of the word.
I must also mention that when I did an hour's "tin rattling" outside Tesco a few weeks back I was amazed and touched by the generosity of people. One woman approached me in tears, told me that her husband has Parkinsons and then proceeded to stuff a £10 note into my tin. So my definition of a carer is "one who cares" In both senses of the word.
The 2 threads I have been reading link up.
Coping with Parkinsons-the important things seem to be a healthy lifestyle, reducing stress and making the best of life now. All of which I agree with and I am trying to do.
My main stress comes from being a carer for my mum who has dementia and is very difficult ( and always has been!!). I don't actually do the day to day caring, she has carers,cleaner,gardener. I am not physically up to doing any of that.
But I am still left with organising everything and coping with the unexpectant- this week it was bees in the house and a broken hearing aid!
We have doctors, social workers, etc in with grand ideas such as respite care but none have been able to persuade mum and her right is to refuse. I do not have the right to refuse to be a carer even when I am ill myself.
It seems that if she had no money then the state would step in but because she has savings then she has to pay ( I am happy with that bit) and I have to organise it all. The only alternative is to walk away from it all, Mum cannot cope on her own and to leave her to cope alone is immoral.
Coping with Parkinsons-the important things seem to be a healthy lifestyle, reducing stress and making the best of life now. All of which I agree with and I am trying to do.
My main stress comes from being a carer for my mum who has dementia and is very difficult ( and always has been!!). I don't actually do the day to day caring, she has carers,cleaner,gardener. I am not physically up to doing any of that.
But I am still left with organising everything and coping with the unexpectant- this week it was bees in the house and a broken hearing aid!
We have doctors, social workers, etc in with grand ideas such as respite care but none have been able to persuade mum and her right is to refuse. I do not have the right to refuse to be a carer even when I am ill myself.
It seems that if she had no money then the state would step in but because she has savings then she has to pay ( I am happy with that bit) and I have to organise it all. The only alternative is to walk away from it all, Mum cannot cope on her own and to leave her to cope alone is immoral.
Dear Mandybike,
You are not alone in this situation, there are lots of people trying to manage like you and there doesn't seem to an answer as people have their rights these days but this makes it very difficult for the families around.
When my husband was at home even with 24 hour care it was still very stressful as you had good carer's and some lazy ones but the main problem was the office's of the care companies who change staff too often or ring you up and say they have no cover, and this is even when they are contracted by the PCT. I had 80 different carer's in two years so you can imagine how stressful that can become. They get away with this because it costs too much for the NHS to sue them, the whole system needs sorting out and this very valuable career/service should be recognized with greater respect, but as usual nobody wants to take this on and make proper changes.
best wishes
vivian
You are not alone in this situation, there are lots of people trying to manage like you and there doesn't seem to an answer as people have their rights these days but this makes it very difficult for the families around.
When my husband was at home even with 24 hour care it was still very stressful as you had good carer's and some lazy ones but the main problem was the office's of the care companies who change staff too often or ring you up and say they have no cover, and this is even when they are contracted by the PCT. I had 80 different carer's in two years so you can imagine how stressful that can become. They get away with this because it costs too much for the NHS to sue them, the whole system needs sorting out and this very valuable career/service should be recognized with greater respect, but as usual nobody wants to take this on and make proper changes.
best wishes
vivian
Care agencies also get away charging for services they have not in fact provided due to the hit and miss nature of the provision I was in a continual dispute with an agency when I was looking after my mother. Many of my friends have experience of this and of care homes charging for phantom hairdo's for example
Hi Mandybike
I'm sorry to hear that because you are self-funding you are still left to your own devices as I was fifteen years ago with my mother whom I discharged from hospital as she was plainly not getting any better there. Like yours my mother was a very difficult personality (or "barking" as my son said after experiencing a holiday I persuaded him to come on with us) which meant she could be very unpleasant to carers which was mortifying at times. People seem to think that if you are not actually doing the caring yourself, you're fine but the situation is constantly changing (your mother's hearing aid and the inability of the NHS to get the wax out of my mother's ears or deal with her ingrowing septic toenail etc. etc.) You seem to be in cloud cuckoo land most of time - carers and district nurses not turning up, the latter being amazed that your mother might go out with you sometimes. Most of the live-in carers I employed via an agency were lovely ladies when they turned up but there was one lady who to me was obviously in the early stage dementia, one who just walked out, one who arbitrarily sent my mother's walker back to medical loans, not to mention tha lady who obviously forgot that she had used the last minute "my grandmother died" excuse before and so on. My mother 'phoned the police one time but they could see that she was well looked after and she kept threatening to revoke the power of attorney which would have made things impossible. To balance the books, I did about three months live-in myself - Christmas, Easter, Bank Holidays - and I was so glad my mother had never agreed on a house for us to buy together as I had my bolt-hole just down the road. I've the makings of a book with the medical diary I kept during the ten years my mother was dependent on me for care until she died at 99, having outlived the geriatricians prediction by ten years. As the saying goes "You could not make it up". However, I'm left with the knowledge that I could not have done any better and she did decide to be a nice old lady in the last 3/4 years,
I'm sorry to hear that because you are self-funding you are still left to your own devices as I was fifteen years ago with my mother whom I discharged from hospital as she was plainly not getting any better there. Like yours my mother was a very difficult personality (or "barking" as my son said after experiencing a holiday I persuaded him to come on with us) which meant she could be very unpleasant to carers which was mortifying at times. People seem to think that if you are not actually doing the caring yourself, you're fine but the situation is constantly changing (your mother's hearing aid and the inability of the NHS to get the wax out of my mother's ears or deal with her ingrowing septic toenail etc. etc.) You seem to be in cloud cuckoo land most of time - carers and district nurses not turning up, the latter being amazed that your mother might go out with you sometimes. Most of the live-in carers I employed via an agency were lovely ladies when they turned up but there was one lady who to me was obviously in the early stage dementia, one who just walked out, one who arbitrarily sent my mother's walker back to medical loans, not to mention tha lady who obviously forgot that she had used the last minute "my grandmother died" excuse before and so on. My mother 'phoned the police one time but they could see that she was well looked after and she kept threatening to revoke the power of attorney which would have made things impossible. To balance the books, I did about three months live-in myself - Christmas, Easter, Bank Holidays - and I was so glad my mother had never agreed on a house for us to buy together as I had my bolt-hole just down the road. I've the makings of a book with the medical diary I kept during the ten years my mother was dependent on me for care until she died at 99, having outlived the geriatricians prediction by ten years. As the saying goes "You could not make it up". However, I'm left with the knowledge that I could not have done any better and she did decide to be a nice old lady in the last 3/4 years,
i would like to just say one big thankyou to care agencies and carers of wot a wonderful job you all do.i have a angency come in to me,and i dunna no wot i do with out erm
Hi all,
Just an update: the first Carers Week news story was posted on our website today at http://www.parkinsons.org.uk
The news story includes a link to the Carers Week website where you can find the report In Sickness and in Health, a survey of over 3400 carers. I suspect that some of you will recognise a similar situation to yours there.
If you need more information about a carer’s assessment or accessing other forms of social care, remember that we have a specialist advisor on our helpline who can assist you with this. The number of the helpline is 0808 800 0303 and it’s always at the upper left-hand corner of this page.
I’ll also highlight your comments here to our Social Policy and Campaigns team.
Be sure to check back on the website for a new Carers Week story each day this week.
Just an update: the first Carers Week news story was posted on our website today at http://www.parkinsons.org.uk
The news story includes a link to the Carers Week website where you can find the report In Sickness and in Health, a survey of over 3400 carers. I suspect that some of you will recognise a similar situation to yours there.
If you need more information about a carer’s assessment or accessing other forms of social care, remember that we have a specialist advisor on our helpline who can assist you with this. The number of the helpline is 0808 800 0303 and it’s always at the upper left-hand corner of this page.
I’ll also highlight your comments here to our Social Policy and Campaigns team.
Be sure to check back on the website for a new Carers Week story each day this week.