Carers what do YOU want?

[Mjaqmac]

Hi everyone I'm hoping I can call upon you all (again!) for help.
I have been writing a weekly column for a newspaper for 4 years and I mention as much as I can the need for help for carers of those with Alz.
This Fri (27 Feb) the column will be about Alzheimer's and carers and what it is we desperately need to make our caring role easier on us. I will be asking my readers to contact me detailing a little about their carer story, who they look after, how long, and what form of dem/alz their loved one has. I would also like them to state exactly what they regard would be the service/help they would find most helpful in their caring role to help them carry on carrying should it be respite, a sitter, whatever they feel they really need. It would be very helpful if any of you would like to PM me with your replies to this question, I plan on printing off all responses and sending them in a letter to the Prime Minister to let him know what carers need, and not what people who have never had to take on the caring role in their lives, deem that we want.
I hope you'll help me out in this, and maybe we can do a little good.
Thanks guys.

 

[Brucie]

Moderator Note: Magic's post has been agreed by the Alzheimer's Society so I am returning it to the main forum in Support, for the moment, to gain maximum visibility.

At some stage I will move it to Raising Awareness and Campaigning.

 

[Bookworm]

Hi Magic - I'll send PM later - clinic appt beckons - but I hope the tight time scale means that you'll carry this over beyond 27th - very glad the post came back - thanks Bruce

This Fri (27 Feb) the column will be about Alzheimer's and carers and what it is we desperately need to make our caring role easier on us. I will be asking my readers to contact me detailing a little about their carer story, who they look after, how long, and what form of dem/alz their loved one has. I would also like them to state exactly what they regard would be the service/help they would find most helpful in their caring role to help them carry on carrying should it be respite, a sitter, whatever they feel they really need. It would be very helpful if any of you would like to PM me with your replies to this question, I plan on printing off all responses and sending them in a letter to the Prime Minister to let him know what carers need, and not what people who have never had to take on the caring role in their lives, deem that we want.

To some extent I've already expressed my major views at this stage - too little info, info that there is comes too late, most info found by selves through support groups e.g. here & especially re Admiral Nurses - we need a new model - there are none in NI & there would never be enough Mental H nurses - so NI could pilot a new version - call it comething else if need be - but a general OR mental H nurse designated to work with people prediganosis and after diagnosis on the kinds of issues we hear here - to help us - but especially all the folk who don't use TP

 

[Mjaqmac]

Hi folks

I'd just like to thank The Alz Society for letting my thread be posted again, I understand that there are rules and regs and I feel very priviliged to be allowed to do this.
As you may know I have been a carer for many years, mum died with Alz 4 years ago this March and my dad has just been diagnosed with progressive alz and possible Parkinson's too (still waiting on appt for this one), I am caring for him at home while looking after my 2 year old son and have no help at all so far, it's hard and no one seems interested, SS have been contacted and a carer's assessement requested and still no sign of any Cavalry coming.
I would desperately love to do something to help the plight of the care-at-home carer, it is such an isolated, lonely and exhausting job.
Did you know we save the NHS £87 billion per year yet no one is interested (apart from Alz soc) in helping us or listening to us, so why don't we all put our voices together and detail what we all need?
I would very much like if you could Private Message me with the answer to 3 questions:
Who do you care for?
How long have you been a carer?
What would you find most useful in your role as a carer?
Your answers can be anonymous and as short or long as you like.
I will then put any replies together and send them with a letter to the Prime Minister detailing what exactly carers feel they need to survive in their caring roles. I am very fortunate that I have a small weekly newspaper column in Belfast so I will be asking readers to do the same, I'll try to maximise publicity for this and hopefully we can get someone to listen but I need your help, Please let's try to make some change for ourselves TOGETHER!

 

[suzanne]

what a carer needs

Not to feel guilty about giving up work,being paid a decent amount of money for caring,£50 a week doesnt cut the mustard, equal parity for all sufferer's, they say the attendance allowance is not means tested....get real, when making an assessment re finance and benefits the going rate for house maintenance per week was a stunning £4.70 [Jackie Smith's £116,000 allowance for a SECOND home springs to mind....]All sufferers should have the appropriate medications prescribeded and not run the gauntlet of postcode lottery.I could go on,Mr Prime Minister should walk a mile in our shoes, live on £50 a week, pay the bills, keep the house up together and running and stay sane. I could complain for ever but it wouldn't make me feel any better and he won't do anything about it.Suzy

 

[Margarita]

Do you mean people who care for someone with a dementia or all carers ?

So when you go on the radio show are you going to be talking about carer that only care for people with dementia? Or all carer, even if they don’t care for someone with a dementia?

Because what I want is more understanding , training for people that look after people with all different type of dementia not just AZ . I want people attitude change with training in all type of dementia.

To stop the generalising that all dementia follow the symptoms of AZ , because then I won’t get told for the 2nd time my mother has a mental illness and a depression .

I want people to know what is the different from a mental illness and a dementia.

So I want a law made that no one can look after a person with any type of dementia unless they have a national recognize certificate stating that they know the different of a dementia and a mental illness , which would included in other areas skills of working with people with a dementia and the symptoms of the decline in the Dementia .

 

[Brucie]

Hi Magic

well, it is too late for us now, but at the time I was trying to manage Jan at home, while juggling a job, the most useful thing would have been a recognition that there is such a thing as young onset dementia.

There were no services that recognised that, or the challenges that are particular to people in the young onset position.

This was across the spectrum - recognition of the problem, the symptoms, diagnosis, day centres, respite, help, right through to care homes.

We were fortunate to find a home that understood and specialised in younger people, but most had a population of residents who were in their 80s.

There is a major dementia problem with an ageing population of course, but scant recognition of the younger ones.

Good luck!

 

[Mjaqmac]

B you have lived through a nightmare and are still doing so, you and many of us carers seem to have gotten a glimpse into hell.
Today I have desperatley, like a child, wished for my 'proper daddy' back. How silly for a woman of my age with my own child, but it's hard to be a mother to your son and your father, it's just not right, it goes against nature.
Thanks for your comments and all you do here on this site.
M

 

[nellbelles]

I have been a carer for my blind husband for 18years in total, possibly 8 with dementia (18 months diagnosed). So I went from a highly paid job (with a pension scheme that I had to leave) to carers allowance. Now I have retired the carers allowance has stopped.
I AM STILL A CARER..24/7
Money doesn't make the carer's role any better, but it could and should provide for the carer's future
Helen

 

[lesmisralbles]

Here lies the rub

I could ger carer's allowance up untill the age of 60.
My OAP then set in.
Ron get's an attendance allowance.
I get nothing.
I could still work.
Who will look after Ron ?
I go to work to pay for a carer ?
What is the point.
It is like unempolyment benefit. Why work, when you get more from benefit's ??
I do not get benefit's, nor does Ron.
We have worked full time between us 110 years.
I rest my case.

We as carers save the goverment millions of pound's every year.

About time they understood this.

Barb

 

[kal d]

Hi, I am a widow and cared for my dad who has vascular dementia for 7 years until he was taken from us into a care home because he was violent to me and my mum .i now care for her full time My mum is in a wheelchair and also had dementia, i had to sell my home and move in with my mum to be with her 24/7 to see to all her needs, we don't see anyone i once saw a social worker who gave me some care vouchers but if i want to use them i have to pre book and they are only for a few hours each time, and no more than once a week, other than that i get no help from anyone nor do we see anyone. i would like to go to carers support groups but it's so hard to arrange cover that it seems such a waste of time so i don't go, and my mum would not take kindly to a stranger in the house with her. i am alone, and have been for years but i carry on each day doing the same routine things. i hurt my shoulder picking my mum up from the floor, the hospital said i should go to a moving and handling class i tried to arrange that, but the ambulance did not turn up for us.

 

[beech mount]

What happened to my post telling people to get of ther ***** and post?you may never have another chance,stiff upper lip etc?
come one!
John.

 

[lesmisralbles]

Hello Kal D

i would like to go to carers support groups but it's so hard to arrange cover that it seems such a waste of time so i don't go, and my mum would not take kindly to a stranger in the house with her. i am alone, and have been for years but i carry on each day doing the same routine things. i hurt my shoulder picking my mum up from the floor, the hospital said i should go to a moving and handling class i tried to arrange that, but the ambulance did not turn up for us.


I rest my case. Once again
Barb X

PS
After all, we are just carers

 

[Brucie]

Magic

don't forget to check the other thread as members are posting there too

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=15072

 

[myheadisinaspin]

i just wrote on your other post, perhaps it should of been here never mind, hehhe

 

[Margarita]

I can relate to Kal d post. Why do we have to live in a post code lottery for the services?

I would like that change " All services for Dementia the same for all post codes "

when Changes happen in my mother in her dementia decline , I get no in between support from no one from the mental health unit , there no one I can phone asking them to come around to talk to be about it , or even on the phone .

I have no admiral nurses ringing or mental health team, district nurse asking me how I am getting on, how my mother getting on. If I don’t ring asking for help ( then I still have to wait for an appointment, only get hour of their time out of 365 days a year, after that I am left to get on with it.

If I never knew now to use the internet and TP was not around to log into . I would be isolated
Just forgotten, lost in the system in what they call social care .

 

[Lisa M 99]

Hi everyone I'm hoping I can call upon you all (again!) for help.
I have been writing a weekly column for a newspaper for 4 years and I mention as much as I can the need for help for carers of those with Alz.
This Fri (27 Feb) the column will be about Alzheimer's and carers and what it is we desperately need to make our caring role easier on us. I will be asking my readers to contact me detailing a little about their carer story, who they look after, how long, and what form of dem/alz their loved one has. I would also like them to state exactly what they regard would be the service/help they would find most helpful in their caring role to help them carry on carrying should it be respite, a sitter, whatever they feel they really need. It would be very helpful if any of you would like to PM me with your replies to this question, I plan on printing off all responses and sending them in a letter to the Prime Minister to let him know what carers need, and not what people who have never had to take on the caring role in their lives, deem that we want.
I hope you'll help me out in this, and maybe we can do a little good.
Thanks guys.

Hi there,
Im new to all of this, so not sure how much of what i say is valid, but the one thing that would make my job easier as a carer is to be able to rely on the employed carers that look after my mum when I am not there.
It's hard enough without having to worry about carers not communicating with you about time changes or how their agency runs and it's really difficult having to check up on the carer to prove that she is there when she says she is!
The regulatory system that promises to prevent this with the particular care agency that I employ, have failed miserably in their task of checking the hours that their carers are meant to do and I even have proof that our current carer has lied point blank about when she is there.
My mum can't tell the time anymore and she is blissfully unaware. So unless I check up, we are being billed for something that is not happening. It would be so nice to be able to trust these agencies and to feel that we are all on the same side, which we should be.
Aside from this, it has been very difficult to actually FIND carers that are willing to come out and help my mum. Most of them don't seem to have been trained in Alzheimer's awareness and the general attitude to caring for people with dementia leaves a lot to be desired in my limited experience.
We are private paying, so I cannot even begin to imagine how much harder the whole process is for people who are not self funding.
We have a large battle on our hands with fighting this awful disease. It would be nice to have more support from outside agencies when we need it.
Thanks for listening and good luck with your cause! x

 

[roundy]

Early onset dementia!

To get straight to the point..there is not enough provision for early onset dementia! Mum is 61 and by now you all probably know she has gone into a home. I was told at the time because mum lived on her own there was no alternative,no other option so thats it,thats all this country has to offer a person who is still mobile,still got her spark but gets confused and can't remember most things go and sit in a home with all different stages of dementia,mum still calls them all "crazy" ! But you know the worst part of it is I have been made to feel that mum is one of the lucky ones because we got funding for a very expensive young dementia unit,don't feel very lucky! This is also out of my area and a good half hour drive away,which I do every day!

What I am asking for is more supported living,in houses specially adapted for this purpose,they do it in Newcastle but it is charity based.WHY,OH WHY cant the LA run the same scheme,then maybe they would not be held to ransome for these privately owned care home! Fat Cats getting fatter in my opinion!

More has to be done for young dementia!

Lisa.

 

[Lisa M 99]

I so agree with you Lisa. More needs to be done. MUCH more. All we can do is say our piece and try to get heard. xx

 

[harvey]

Hello

I think that most of us would want Dementia classed as a medical condition and not a social condition. Most of the sufferers at he moment are a generation who worked all their lives and paid into the system. When they most need help it is denied them. My husband has had to give up work to look after his mother and I work full time. Although he gets carers allowance we are out of pocket caring for MIL. Instead of life getting easier it gets harder. We just seem to be subsidising those who are able to work but choose not to.
Our local news [Look North] reported on a 'dementia village' [I think in Lancashire] but there is another one planned for Lincolnshire. It looked absolutely fantastic, village life and independance in a secure environment. Wouldn't somthing along those lines be great, how many could have been built with all the money lost by the Bankers??? What was good about the village was the accommodation for couples, I think that would relieve a lot of the stress. I think the feeling of being alone without help at hand is one of the worst aspects of caring for a relative with Dementia.
Well we can but dream of better care in the future.

Polly