Sunday, 24 May 2009

Blimey, been awhile hasn't it?

It's been an interesting and often amusing couple of weeks. Had to ask facebook to close down an account that had been set up in my name. Which they did swiftly.

An update on the Jobcentre Plus phone call post - they're now saying they have no record of contacting me (shrug).

Had a chap ask me out for coffee. Kind of him. Another guy has asked me to support him at a disability benefits hearing, and perhaps go for a drink/coffee afterwards?

Sounds fair enough? Hmmm. Until you realise that for me going out is a carefully planned military style operation. I don't -can't- go out unaccompanied. I travel with a carer. We need to know exactly where the buses are, and how long we would have to wait for them. Standing for long periods is out of the question.

We need to know where the toilets are near the bus stops, because I'm doubly incontinent. I need to know whether those toilets have at least basic changing and disposal facilities, and I often need a carer - of either sex - to accompany me to the toilet. Then there's the cost of the bus fares for the carer. Don't get me going about trying to catch a bus in a wheelchair - it just isn't going to happen. Sure, buses have reserved spaces, but would you ask a couple of harassed mums with prams and kids to block the isle and you, so you can park up?

I won't. Then there's actually using Wheels. I have to be pushed. Uphill, mostly. As my lass will tell you, it's no fun at all. There's the essential 'dropped curbs' which you have to go miles off-route to find, assuming no-one has parked on it or blocking it. Normal kerbs are possible, but more often than not the front wheels drop, the ass goes up, and I tip out. Take it from one who knows, landing on your nose on a busy road, while some kind driver blocks traffic while a carer helps you back in is not amusing.

Can I propel myself? Sure I can. I've an arm that works, and another that belongs to someone else, and it takes a bit of negotiation to get them co-operate. For a while. Then they fall out. I'll leave it to your imagination what happens when a one armed man propels himself in a wheelchair. It's ok to smile - it makes me laugh :)

Catching taxi's for coffee is just plain silly cost wise.

Did you know that some taxi companies charge extra for wheelchair users because their cars need to specially adapted? Did you also know that there wheelchair width restrictions on trains?

A café? Assuming the toilets, changing and disposal facilities are ok, I need to know about the cups. Yup, cups. With a normal cup, or glass I dibble all down my shirt. The lip on a normal cup is too thick, but I'm fine with thin bone china, which in most cafés isn't practical. Like hell am I going to use an adult feeder cup in public. And eating in public, perhaps having someone cut up my food for me? Thanks, but no :)

For the same reason, I don't nip out for a newspaper, go for a pint, I'm not allowed to drive, and I astonish myself if and when I can dial a phone number correctly. Oddly enough, I can text, slowly.

If I was to be asked what the most difficult things are? The concentration it takes to look normal. I know I don't HAVE to - I prefer to. It's a man thing. Depending on others, ummm, yeh. And people, because my intellect, on the whole, is peachy, assuming I am normal, whatever that is. I'm a multiple stroke survivor, not a common cold survivor, and it's effects are permenant.

Tuesday, 12 May 2009

Wakey......

I spoke to a couple of people today.

Both were convinced that the experiences, qualifications, and occupations that they've 'gained' below 30 defined who they are and what they are. Gosh, were they adamant.

The hell it does.

What amazed me, was that one was older than me!

Life is for growing, expanding, changing. The day I stop believing and experiencing that, is the day I'm just off the M1, in a quiet secluded woodland, with a FRUIT tree planted over me, with a cute little brass plaque on the trunk. Yup. It annoyed me.

Tsk. Eat me! :)

Thursday, 7 May 2009

Imagine

If you had to watch every step you take. That walking across your lounge meant being careful to avoid the coffee table. If you needed to check the floor to make sure someone hadn't carelessly thrown clothing, toys. Not for tidiness sake, but to make sure you didn't suffer suffer serious injury.

Being supervised in your kitchen, so you didn't drop anything, burn yourself, chop anything important off.

Imagine, that you had to think first before walking through a doorway, to make sure you didn't hit the door frame. Walking down the hall, you need to be sure no-one is coming through adjoining doors and you don't hit the walls. Without extra grip rails, stairs would be impossible, and that stairs without them are off limits. Not because it can be difficult, but because it can be lethal. Visit someone? Upstairs bathroom? Forget it.

If you couldn't get in or out of a bath unaided - and that to shower, you needed a special adjustable board across the bath. That your shower needed to be adapted so you can use it at all. That people hovered around the bathroom door while you're in there wanting privacy.

Can you imagine someone insisting sitting with you while you eat? Calling for you if they think you've been in the toilet too long? Tapping on the door?

Imagine, if you will, not being allowed out unaccompanied. Not being able to nip out for a paper. A pint? A burger, a pizza? A walk that used to take 15 mins now taking 45?

What I've just written is terribly un-British. Definitely considered unmanly, and frowned upon.

I have little Cerebellum, and some right sided paralaysis, and work hard to look normal. Thats just me - I have no probs being open - though some of the messier details I prefer to share privatly :)

I help out a little on the Stroke Association website (Talk Stroke) - and I'm amazed though it's there for people to help each other, and often Carers tell the most heart-rending stories about their experiences, very few stroke survivors seem willing to talk about the difficulties they face.

I'm sure someone would point out that because of their difficulties some can't acess, don't have the will to, or can't afford net access. I think I have a campaign coming on.......

I really think they should, because there are work-around most things. Don't get me wrong, some do, but privatly. I'm fiercly independant (see what new words you can learn if you knock on my toilet door!) Cerebellar (link)

Stroke Association (Talkstroke) - Anyone can ask questions there - you don't have to know anything about strokes, or have to be a carer. The Stroke Association is Britains only registered Stroke charity. They aren't just an aid for stroke survivors and their carers, they are the number one resource for information about stroke and stroke prevention. If you dig around, you'll find me there as 'Dray'.

Wednesday, 29 April 2009

Oops


Got an hour to myself while Bear takes Tots off for 'Parents Evening'.

Dunno why we still call her Tots - she's actually a young teenager - her aunt called her Totty Wormcake when she was naught but a tiddler, and, but for a brief rebellion when she reached ten, when she spent a couple of weeks refusing to answer to the label, the name stuck. Even her local mates call her 'Totty' now :)

By the way, I'm not here, honest. I'm the other end of the room with my feet up - as ordered.

They forgot about the Lappy. Ha!

Seriously tho', I've had a rough few days, but I've no-one to blame but myself. I have enough trouble standing at the best of times, and walk with a wobble. So what did I do? Had a few beers, that's what. Pure pig-headed rebellion. I drank, relaxed, forgot to concentrate - which is second nature to me normally - and awoke the following morning covered in quite alarming bruises. In places I didn't think were possible.

Apparently, some idiot moved the floor closer, narrowed the door ways and hallway, and moved my safety rails and inch or two to the left. Needless to say, I ache. Good news. I don't get hangovers. Never had one. Bad news. I really wish I did...... then I'd have an excuse to sulk.

So...I'm under orders - feet up, shut up, rest, no net. So y'see, I'm not here. Any minute now, one of those neighbours is going to knock and walk in with a "No, no, Bear didn't ask me to check, just wondered....."

Yeah, right :) Forgive me if you read this and I owe you an email - there may be a slight delay.


Gotta go - I'm getting a nervous twitch...



Sunday, 19 April 2009

Dad, have y'got.....

My lad, in his twenties, and his girlfriend are off the Disney Land Florida in a month. It's costing them over £900 each. It was the Dominican Republic last year. Good for them - you're only young once. However....

She's pointed out to him, since he pays his board monthly, that he really shouldn't pay anything towards his keep for the two weeks their away. She's also complaining he isn't saving fast enough to raise the £1000 'pocket' money their taking each.

Hmmm. Interesting logic.

My lad's on a reasonable wage. After paying his board, he's left with about £750 per month pocket money. She's a student on a student grant. Lives with her parents. They don't ask their young people to contribute. Don't need the money, apparently. She and her brother have cars, and their parents contribute towards the running costs.

My lad tells me they have discussed getting a place together, but they can't afford it.

Ahuh. I'll bet.

I was refilling the fridge the other day, thinking how magical it must all seem. The home cooked Tikka wraps and chocolate and crisps that appear ready for work in the morning. The fridge that refills itself. How those clothes magically disappear from the bedroom floor, and reappear, fresh, folded and pressed in the drawer. A bed that makes itself, and the plates, dishes and cups that disappear from the lads bedroom, and sit gleaming in the pot rack. And meals on the table when he gets home tired from work. As for the toilet roll holder... shazzam!

I was reading a survey that said something like 82% of 20 - 34 year old's are staying with parents because they just can't afford to live anywhere else. Mortgages are hard to come by, rents are high. Food and fuel prices creep up. We worked out that though we used 25% less gas and electricity than the same time last year, we are paying at least 25% more.

But there's more to it than cost. There's responsibility. Responsibility for your family, your home, yourself. I left home quite young, and dropped myself into it headfirst. My Bear left home to live with me, and learned from and with me. Then came the kids. Only, two of them aren't 'kids' any longer. And I charge them board - a fixed percentage of any income. When they've been unemployed, they've paid nothing.

I'd be daft to say the money doesn't come in handy. 'Course it does. It's absolutly peanuts though compared to the amount they'd have to dish out if they had their own places. I had considered, like my lads girlfriend's parents, not asking for anything. The world wouldn't have stopped.

There'd be food on the table, clean clothes, and a magic fridge freezer, as there has been for 20-odd years, because we love our kids, and once you get into the habit of being a parent it's hard to stop. But I decided by at least charging a small amount of 'board' I've be giving them a foretaste of what the real worlds like. You have to pay your way. If you don't pay for it, you don't get it - it's hardley rocket science. If you don't wash up, pots stop in the sink until you do. Unwashed, unironed clothes crease and stink. Unmade beds and unhoovered carpets stop that way. Unless you can afford to pay someone to do it for you.

And if your off to Florida, you can't say to the landlord or the mortgage company, water rates, council tax, gas and electricity company "I'm off to stop in a posh hotel in the sunshine for a couple of weeks, so I'm deducting the cost of all that from what I pay you, seeing as I won't be using the place, ok?"

Or there might not be a lot to come back to :)

Wednesday, 15 April 2009

By 'eck

Don't think I've eaten a straight forward meal in my life. Just can't do it. I have to twiddle. My sauces and gravies can be real witches brews. No complaints yet tho.....

Something I picked up from my dad I think, who said he'd die before he gave me his recipe for steak and kidney pie, or the pastry recipe for his meat and potato pie. He was right y'know. He never did, and it took me years to reverse engineer the memories into reality :)

Lets just say, if you know your pastry and your sauces, he was a big man, who wasn't into healthy eating, and that's what got him in the end :)

Always anxious for new ideas, I like to doodle around the net for ideas.

Came across this site, which is fun to use, particularly if you're a bit cash strapped.

Oh No Not Beans Again

Enjoy !

Thursday, 9 April 2009

What is DLA?

DLA is Disability Living Allowance.

I've explained this before, but a brief recap.....

Disability Living Allowance is a UK Government benefit available to people who as result of injury, accident, or illness need temporary or permanent help with care and/or mobility.

There are various levels of help available.

It isn't the scope of this article to offer a full range of the implications of the benefit.

DLA, as I've already mentioned, provides extra financial help for people who need help with their care and/or their mobility. It doesn't matter if you're married, single, have lots of mates or a close family who are willing to help - if you, or those around you feel a little extra will help pay for extra care, or, f'rinstance you need to be accompanied or transported - or even to pay for transport? This is for you.

The first thing worth mentioning is that if you don't have the support of your GP, it's very difficult to get. For instance, your hospital consultant or the social services may feel that you should benefit from help, and your GP may not agree. More, and most unlikely, no-one will agree.

It's still worth applying. But there's a caveat. That is that you will have to attend an independent assessment by a panel to which you will have to produce evidence to support your claim. This may happen even if your GP, hospital, social services all agree. This may happen at any time even if your claim is successful. More, you may be checked for fraud at any time, and you have to report to the Department of Work and Pensions any change in your circumstances or health.

To make life more interesting, there are a number of levels of DLA.

Care. Higher, Middle, Lower rate

Mobility. High. Low Rate.

These may be awarded in any combination. The financial help you may receive depends on the opinion of the Department of Work and Pensions based on the information you provide when you fill in the extensive forms that need to filled in. Tip:- Don't fill it in yourself. Get help from an Advice Centre.

The purpose of the benefit is to pay for care and mobility. It ain't pocket money, or bill money.

It may change at any time. You may be 'called in' for a re-assessment at any time by a panel of independent experts. For example, I was on higher rate care, lower rate mobility, despite that I use a wheelchair. I had to reclaim every two years. At my last reclaim, I was offered middle rate care, lower rate mobility, but 'indefinitely'. After a lot of careful thought, and discussions with my local advice centre, family and other carers, I decided not to oppose the change.

Simple upsides :- DLA isn't means tested. You can get it whatever your income, as long as the work you do doesn't disagree with the way you describe your claim. Pretty obvious really. If you are on your feet all day at work but claim mobility, your a fraud. If you work alone for long periods, but claim you aren't allowed out alone, likewise.

I've had my home adapted with extra banisters, front and rear door rails, bathroom and toilet grips, and bathroom adaptations. These are on loan for as long as I need them and free from the social services. I don't have a social worker, but their their if I need them. I can also get respite care, for myself, or I can go into respite to give my family a rest.

Secondly, if you are awarded middle or higher rate care, if you nominate someone as your carer, they can claim up to about £55 per week Carers Allowance, as long as they care for you at least 35 hours a week and they are allowed to work the rest up to £90 per week plus reasonable allowances (meals, bus fares) on top of that. Be warned though, that if you are on income support, Carers allowance is 'means tested'. So you'll get about £27 per week for 35 hours care.

A home help here costs £14 per hour. But as a carer you may only get £27 per week. that's 74 pence an hour. Disgusting.

catchya!

Tuesday, 31 March 2009

That was interesting.

I've just taken a call from a local Job Centre. Apparently, they don't want to see me.

Well, the number was withheld, so I'll have to do further checks. To explain to non UK readers - a Job Centre is place you go for help in finding employment, and where, if your unemployed, you're required to go to 'sign on' to receive employment benefits, should you need them. A condition of receiving those benefits is that you have to show evidence that you're actively seeking work.

To that end, they provide a great deal of help to enable you to find employment. After awhile, should you continue to claim employment benefits, you're required to attend, with others, a kind of intensive job seeking course. If you fail to attend, or you remain unemployed, you have to go on some basic skills courses. Meanwhile, you're regularly interviewed by Job Centre staff to find out what measures you've taken to find work. Fail to meet any of those criteria, and you can find any benefits reduced, or stopped.

There are advisor's to help anyone with a disability find work too. So far, so good.

One teeny-weeny problem. I haven't claimed employment benefits since I was a teenager - and I'm in my fifties now - so we're talking over 30 years ago. I've never been inside a Job Centre. My experience of unemployment and employment benefits (I think it's called Jobseekers Allowance) is second hand.

I asked the terribly nice young lady to explain how she got hold of my name and telephone number, and she couldn't - I was simply on the list of people who she was asked to phone to tell not to attend. From that she inferred, that at some point I'd been asked to attend for an interview, and that wasn't required any more. She asked if I'd received any correspondence, which I hadn't. She concluded by telling me that I wouldn't be bothered again.

Which is nice.

My first feeling was that it was some kind of scam to get personal details, but I wasn't asked to confirm my name, date of birth, or address, nor was I asked for any financial details.

So I'm flummoxed. If anyone has any idea's?