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C A & IS...totally confused & bemused - Carers UK Forum

C A & IS...totally confused & bemused

All about money
I'm new to this site, and I'm hoping someone, somewhere out there can help advise me.

I've been an unpaid carer for my parents (79 & 83) for the past three years or so until my mother had a stroke in June. It became obvious that once she was released from hospital I'd have to give up my job and become her full time carer as my father would never be able to cope as he has his own increasing health issues.
She was assigned an Occupational therapist who was brilliant. Not only did he sort out a load of equipment and stuff for her (delivered in person at 7pm the day after she left hospital) but told me about Attendance Allowance and Carers Allowance, which I didn't even know existed.
I'm no slouch when it comes to filling in forms, but these forms completely confused and intimidated me (reading War & Peace would have taken less time and effort.) In his own time, the OT carefully went through them with me, and ended up practically filling them in for me.

My CA is now up and running (from 1st July), and I'm now 90% certain my Housing benefit has been sorted too. However, I'm struggling to survive on £59.45 a week, as this is my only source of income now.
For instance, I got the shock of my life two weeks ago when I went to the dentists with tooth ache. I assumed that being on such a low income would automatically qualify me for free NHS dental care, etc. Not an unreasonable assumption to make. Not so according to the receptionist. I'd have to pay £65 there and then to get my tooth filled, go through the rigmarole of filling in yet another long form, wait up to 6 weeks to receive some exemption certificate and then reclaim the £65 back.
I had to cancel the appointment as I couldn't afford to pay for my filling. Now I'm dosed up to the eyeballs on Ibufren waiting for the pain to become so bad that I class as an emergency before pitching up at the dental hospital which is free... or so I've been informed. The receptionist also told me that I should also be able to claim some Income Support to top up my CA to £71.

I then went to the Job Centre but they said I couldn't. I then checked with the Occupational therapist and he said I could and to go back to the job centre. They said I couldn't a second time.
It's not as though I can visit these places at the drop of a hat as I have to make other arrangements for my mother and fit such visits around my dad's appointments, etc.
At my wit's end I cadged a spare laptop and dongle off a kindly relative in order to go online. I've been on several sites today and I'm still none the wiser.
The DWP website was as clear as mud, and when I tried to sign on to another carer forum earlier today they wouldn't let me join because of those stupid squiggly code things. I got them wrong too many times and I was unceremoniously booted off the site and told to try again later. I don't even know what those wonky letter/number box things are or what they're supposed to achieve other than make my eyes go gozzy. Are they some kind of IQ test? Are only tech savvy wannabee code breakers allowed on to these sites? I bet even Alan Turring would be defeated by them; they're certainly an enigma to me!

Fortunately, this site was idiot-proof to register with with no Enigma Code wiggly things to contend with... thank god!
Now that I'm finally on here, here's hoping some other carer knows if I'm entitled to a top up or not and, if so, can tell me how to negotiate the mine field of trying to get it sorted out. Any and all tips will be very gratefully received indeed.

Now all I've got to do is try and work out how to get this draft onto the forum, hopefully before the year 3000. I really haven't got a clue how to do this. There's a reset button I'm eyeing warily. Reset what? Do I dare press it? Will my draft disappear into cyber space forever more?
Probably, so I'll press save instead then see if I can suss it out from there. Wish me luck... with my rusty internet skills I'm going to need it. Image
Hi Sajehar, welcome to our forum. The whole benefit system is like a sick game of snakes and ladders in my view, however don't despair. If you look at the top of this page there is a "tab" which says "Help and Advice". Click here and there's an online booklet, about 30 pages if I remember rightly, full of information, written, thank heavens, in a very reader friendly fashion. So much depends on where you are living, how old you are, and what savings you have. Has anyone explained that Social Services should have done a "Needs Assessment" on mum to find out what she needed before she was discharged. You should also have been involved, and had a "Carer's Assessment". Were these done?
Dear Bowlingbun (where do these wonderful names come from?)

Thanks for reply so quickly to my questions. I don't even care if you can't answer them, the fact that someone replyed is enough (how pathetic is that!) It gives me faith in humanity.

I live in Liverpool, but my parents live on the Wirral. These are two different councils so maybe that's causing confusion?
I'm 53 and have no savings whatsoever. Maybe I should, but how can you save when every penny you earn is spent on ever increasing utility bills, food, transport, etc. In the face of such immediate demands, rainy day stuff tends to go out of the window.
Did my mum get a needs assesment? I've no idea. She got loads of equipment after leaving hospital. So, I assume yes.
Did I get a 'carers assement', I don't think so. I don't even know what that is.
I am so ignorent of this stuff I feel like an idiot.
Now I have to quantify and explain stuff. How do you explain your mother wandering out into a blizzard to feed the birds when it's pitch black ouside and she can't remember how to operate the dodgy double glazed frence doors that have been there for 20 yrs.
How do you explain to her that birds don't need feeding at that time of night?
How can you explain that all you wanted to do was keep her warm and reassure her.... the birds would be fed; they where. You can't. She's more worried about those blasted birds than herself.
But... I'm beginning to understand it. I think. At times I feel like Tohmas Aquinis... God,make me good, but just not yet! At times I resent my mother, at others I'm in awe of her...she makes so much sense. What am I to do with this mismash of everything. I can't make head or tail of it.
Hello again. My forum name is a mixture of my surname and the place I live. We don't use our real names so that we are not easily identifiable in real life, just as a bit of security - but I usually sign my PM's with my real name. Social Services have a duty to assess disabled people to make sure that their needs are met. Ask mum and dad if you can get SSD to visit them - you can say that it's to check that they've got everything they need. Make sure you are there at the same time, my mum often says she can do things which she used to be able to do, but sadly can't do now. It's really important that SSD hear how it is, not how they'd like it to be. Be sure to mention the bird/door incidents you have mentioned. The Carers Assessment is designed to inform Social Services about how your feel and cope with mum and dad, so in your circumstances it needs to be done by the same people doing mum and dad's assessment. I always suggest that before an assessment you write down the things which you struggle with most, and need help with most, in order of priority. Anything at all, from a stair lift to having a caree free day. If you are living alone you should seek some benefit advice from CAB or a Disability Rights organisation or our own Carers UK helpline about claiming extra benefits. I have been a carer for 34 years, son with learning difficulties, husband, four elderly parents, and SIL with post natal depression. Now down to just two, son and mum. I've also been seriously disabled myself - so now I share what I've found out through the years!
I sent you reply, but it never got there.
Dear Bowlingbun
I must have done something wrong last night; I was a bit knackered and not exactly Einstein when it comes to computers.
I cannot thank you enough for your advice. I did everything you recommended, and managed to get more done in 24 hours than I'd managed alone in over two weeks. I am entitled to an Income Support top up and, as I type, a form to apply for this is winging its way to me from the DWP. Plus, as soon as it's sorted, I'm entitled to free NHS dental care. So, good buy Ibufren, hello filling!

I'm writing down everything for my care assessment as you suggested. That alone is being very therapeutic. The "feeding the birds" incident was truly terrifying. If I hadn't of decided to stay the night at my parents she would have frozen to death. My father had fallen asleep in front of the telly, as normal, and me mum had spent 20 mins going to the toilet so I went to investigate. Her concern for the birds astounded me. But I decided that if you can't beat them then join them. So for months now we've been feeding them together and I've grown to love watching their antics with her.
She's got me into gardening too. Her arthritis is now so bad she can no longer garden which is her passion. So I do it under her beady eye. We argue like mad over what's a weed or not. As far as I'm concerned if a plant has pretty flowers then it's a flower and should be left alone. Not so, according to her and, just to shut her up, I've pulled up all sorts of beautiful plants. Where I refused, they've started to take over the garden... so she was right!
Me father and I decided to grow tomatoes this year, and we ignored her advice. As a result the tomatoes are the size of grapes. Still tasty though. Her short term memory is poor and getting steadily worse, but her knowledge of gardening is ace. I still can't get over the fact that I regularly have to remind her to use her walking sticks, and re-teach her how to use them properly, yet she knows the name of every plant in the garden. In future, I'm going to ignore my father and follow her gardening instructions to the letter.

Your caring history took my breath away. How on earth did you cope and still stay sane? You're a hero.

One good turn deserves another, so if ever you get into trouble with the power or water companies don't hesitate to contact me. I fight them, armed only with a 79p calculator. I do this for the tenants on my estate in my spare time for free. So far, I've managed to claw back over £30,000 in rebates for them over 3 years. I've even had to get my MP involved twice when the greedy so-and-so's refused to respond to me.

Got to go pick some grape tomatoes now for mum's scrambled eggs, it's the only thing she'll eat for breakfast. I hope I'm not egg bounding her. Must check that on the nutrition bit of this site.

Had breakfast and spent past hour doing daily crossword with her. I read somewhere that they're good for people with early dementia. I scan it and we have a competition to see who finishes first. She beats me nearly every time. I've resisted the temptation to cheat by looking up stuff on the internet... so far!
Once again, thanks for your help. Apologies for prattling on so much but it's amazing how quickly you become isolated as a carer. I'm sure you'll understand and forgive my prattle Image
Hi, Sajehar and welcome to the forum
Im so glad that you have got the forms for Income support sorted. DWP is, in my opinion, useless at knowing what benefits you are entitled to.
It sounds like you are doing well with the caring - getting your mum involved with stuff that she was good at (ie the garden, crosswords) is indeed very therapeutic. It is still very early days from a stroke view-point - you can still get some improvement up to a year or two after the stroke.
If she continues to get day and night confused, one of the members has done a clock which tells you what you should be doing as well as the time. If you click on the link below you should get to the thread.

Hi Crocus
Thanks for welcoming me to this forum. I'm so pleased with it, and real help/advice I've received, I think I've gone a bit nuts on it.
Bowlingbun described the DWP as like snakes & ladders; a spot on description and then some!
Eg: I ended up on the right page of the DWP website I never managed to find on my own by following BB's advice. I did this assessment thing and found out that I was entiteled to extra IS help. I decided to do it online, clicked on the icon thing and spent ages, on and off, filling in a 56 page application form. Right at the very end it binned me out. It didn't recognise my operating system.
I called my techy nephew (he sorted me out with this laptop) because I don't understand this s..t. He was gobsmacked.
The DWP website only recognises operating systems upto windows XP. According to my nephew this was launched in 2001 and superceded by Vista, then windows 7 in 2007, then windows 8 last year.
In other words, unless you have an ancient operating system, you're stuffed when it comes to claiming online.
Question: just what are all those millions being spent on regarding updating computer systems if the DWP can't even handle widows 7. Just about eveyone I know is on windows 7!!!
But IDS (Ian Duncan Smith) wants everybody to claim online... good luck on that one when your system only recognises stuff from the stone age (relatively speaking.)

I then decided to ring the DWP instead. She tried to persuade me to claim via telephone. I polity declined and insisted that form 1A be sent out to me. I know from past experience that the worst thing anyone can do is rely on telephone conversations. You must leave a 'paper trail' that you can prove. How many people can do that... how many have recording equipment like they do? Not many. So, play them at their own game.
God.. I sound so cynical!
Any road up, I insisted to the DWP lady I was to speaking to that I could be posted this form
According to my friend in the DWP the system is 20 years old!!!
Dear Bumblebun
I can well believe it!
How in god's name can a government insist that all claimants must eventually do stuff online if their system doesn't recognize systems that have been in place since 2007. The mind boggles!
IDS wants all Universal Credit claims to be done online reasoning that 80 percent of the population have access to the internet. Well if half of that 80& have operating systems from Vista onwards then that means 60& of the population will not have access to online claiming. It will cause mayhem. No wonder they keep rolling back the roll out.

The cynic in me wonders if that's a deliberate policy. After all, the DWP have had 5 years now to update to accept Vista, 3 years for windows 7 and 1 year for windows 8. They clearly haven't bothered which, with the resources available to them, is suspicious. Image

It kind of reminds me of the trials facing Arthur Dent in The Hitchhikers Guide to the Galaxy. He wanted to view the council's plans for a new ring road and was told, "Of course you can." He was led to a flooded cellar infested with sharks and told the ring road notice was pinned to the back wall of said cellar for public viewing!

Regardless of whether it's deliberate policy or sheer incompetence, each is as bad as the other. So I'm going to email my MP about this. Plus email the letters page of the Mail (my parents newspaper) and the little Independent (my newspaper.)

Forgive my ignorance but what's a SIL?