I'm a disabled person, I'm fed up with being a poor disabled person, what can I do?

by , 6 Jul 2012

I've had brain cancer, it was benign so I'm not going to drop dead soon, I hope. But I'm very wobbly and my co-ordination leaves much to be desired, my memory is absolute rubbish. I can't even remember what I was looking at before I started doing this. But I used to be a vivacious intelligent women, I still make people laugh. I'm everso fed up with being poor, I watch my poor husband who is my carer, he used to race bikes, he had a bad crash at Brands Hatch and suffers with a back problem, that was aggravated by pushing me in a wheelchair. Our garden is like a jungle, we haven't decorated for 15 years not that we can afford to, I just feel like one of the forgotten few.

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Hi & Welcome annapan81 I had an industrial injury when I was 35 & ended up with a crushed spine, I was in Hospitals for 3-long years I'm now 67, My legs give me only pain as does just about everything else in my body I take 200 mg Morphine every day when i am (What I consider being ok) I know how you must feel but I am not even going their.
My suggestion is how I found out how to handle people doctors & profession in all there strange way's 1st thing to Remember is There is Always worse than your self & we both know that so with that thought think how lucky we are to live in the U/K & be able to obtain medication.
I was told I would Never got out of a bed again I live with my torso strapped into a steel casing this allows me to get into a sitting position, there was nothing in this country in 1979 when this happened to me the casing came from USA.
Help may I suggest you contact Social Service's they can send a qualified person to tell you what your able to get for help & that includes money wise as well, Also Either get you both to see the C.A.B. if you cannot get to them they will at a push come to you But they are very busy & all voluntarily people but they can tell you how & what you can claim for more than anyone.
You are far from poor get your mind & eye's to look around yourself "Self Pity is always going to pull you Down" ask for a visit from the local health visitors they can also help & advise you & even get council grant to alter your home to suit your need's, But I need you to never allow them to just state that they know everything YOU BOTH must fight the right's you have no one knows your body better than you & you need to keep reminding anyone who argues with that & they will do it often Fight your own corner the heading above sound's like you have lost before you have even begone & you need to constantly fight for everything to help you both.
My final advice you need to tell them what YOU NEED & pity is not one of those thing's! I was World Hot rod Champion for 5- years in a row beat everyone & I built my own vehicles & engine I was also in power boat racing after that then I joined the British Water Ski team we were the 1st in the World to do 15 people Pyramid on water ski's, I was a Transport Manager when this happened to me & I begged them to kill me more times than anything else & meant every word.
The only way now is to look how your going to get through a make yourselves a life without any hope of looking for any future then you are lost before you even start Social Services can get you wheelchairs & Motability can get you a pension & a new vehicle adapted for you both to lift your wheelchair in & out of the vehicle you are means tested & if you don,t have a large bank balance they will pay for it all, I am now happily married to a beautiful Girl who is 20 years younger than me & we have a wonderful 24 year old Daughter who has passed university & she also is beautiful Girl.
This tell's you there is a GOOD LIFE available but even if you have any faith of any type every Religion tell's you one thing (Life is not easy you have to fight to get a reasonably good life) To be Negative & evil is easy.
Every single religion states that in writing, Now start a NEW Life by contacting all of the above & also request you have a Health Visitor with whom you can talk openly with & they can start so many thing's & suggest stuff you don't know about she-he will help you but like everything else in this Life you have to fight for your own right's I can assure you all of the above will give you help & tell you what pensions are open for you to claim, This is the only way forward & soon you will not be rich but neither ever think your poor they all can help you both that is why they are their to help you in so many way's you never ever knew before, should you wish to write & ask for anything you think I can advise you or help you in any way please just ask on this Forum. Stay Positive your Future has just started to become much better. Best Wishes.

by crossf, 6 Jul 2012

Great advice . Top bloke you are , Crossf.

by nadge, 10 Jul 2012

Crossf I've just cone across this post!
What an amazing detailed positively uplifting post I've read in a long time!
You are a true inspiration and Anna and her husband will benefit from your good advice. Beautifully worded I couldn't add anything more to that.

by serena1, 10 Jul 2012
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I'm really sorry to hear that!

Between you, you may qualify for carer's allowance, disability living allowance and attendance allowance:

http://www.carersuk.org/help-and-advice/help-with-money/benefits-a-tax-credits/carers-allowance/who-can-get-carers-allowance?gclid=CISGgKy8hbECFdIRfAodqH6C3Q

http://www.direct.gov.uk/en/caringforsomeone/moneymatters/carersallowance/index.htm

You should be able to get grants and NHS help to adapt your home and you could also talk to the charity Macmillans (http://www.macmillan.org.uk/Home.aspx) about what's available as you've survived cancer.

Additionally, check if any previous or current employment entitles you to health benefits such as early retirement on health grounds, critical illness cover and / or permanent health insurance / income protection.

As crossf says, also contact the CAB, investigate motability and do try to stay healthy and upbeat! If you feel things are getting to you, contact mind (www.mind.org.uk) who may also be able to offer advice and help to you.

by G-Man, 6 Jul 2012

Welcome to the Forum, annapan. I'm so sorry to hear of your troubles. Several of us on here are either disabled or care for disabled people, and I know how much we have all been helped by being able to talk to others who offer help and advice in a totally non-judgemental way. And a bit of humour goes a long way to lift the siprits too.

I do hope you will stay around.

G-Man and crossf have given excellent advice and I sincerely hope you will be able to get some help.

by Feline123, 7 Jul 2012

Good on you G-Man giving the links to Anna. I really think Anna will benefit from it and of course Crossf posts.
This forum has such a wonderful people and even though I don't have any experience in this discussion it sure has touched me.

by serena1, 10 Jul 2012
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I look after my disabled husband and have been awarded a living allowance, but I do not qualify for a carer's allowance because I have a small private pension which takes me outside the lower limit, but you might be luckier. There are a lot of agencies around, if you know where to look for them, and although you don't say how old you are, either Age Concern or the Citizens Advice Bureau could help. Social Services at your local government offices can also put you in touch with the right people. There is also an organisation called Crossroads which might give your husband some regular respite care. Good luck with your problems - perhaps you could let us know how you get on. There are a lot of people on the forum who will take an interest in what you have to say.

by dejayr, 6 Jul 2012

It's appalling that the corrupt state refused you C.A. because you have a small pension, Deejayr. Just pathetic , yet so typical .

by nadge, 10 Jul 2012
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Anna

I cannot begin to comprehend what you and people like Crossref have been through. I am sure that every day is a struggle, but getting through every day is a triumph too.

I have the utmost respect for you and just wish that I had a magic wand that could make things right. Unfortunately, in this real world, magic wands are in short supply. All I can say is that there are some exceedingly kind and well meaning people on here. Some of them have been through similar experiences, such as Crossref, some devote their lives to disabled relatives, such as Dejayr - and some, like yours truly, just want to try and bring a smile to your face with little bits of nonsense.

No, we cannot provide the solutions or the answers , but hopefully we can provide you with a little bit of help, a little bit of hope and maybe a little bit of relief. I wish you all the best

Take care

by steve_ben2004, 6 Jul 2012

I like you am disabled I led an active life in the forces then with British Steel and finally as a prison officer unfortunatly I know its blunt but thats life myself I am just gratefull to still be here after an horrific road accident rendered me disabled in 2007.Unfortunatley all benefits are means tested but do use organisations such as the CAB they can offer good advice and moral support.

by Noddy1, 6 Jul 2012

These are heart rending stories of immense woe and suffering, but there must always be hope. God bless you all.

by greydo, 6 Jul 2012

Hi annapan81
I hope you will become a long term member of this forum. they will do their very best to help you and your husband.
They will lift your spirits with a laugh, a joke or a rime.
I have not been a member long,.BEST thing I did. Very additiff!!!!!!
can't spell so what, but I can help other people. and with you life experances you can, it's good feeling, try it

by fish1chips2, 6 Jul 2012

Very addictive indeed fish1chips2. :-)

by serena1, 10 Jul 2012
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well said fish

by steve_ben2004, 7 Jul 2012

Lovely post, fish. x

by Feline123, 7 Jul 2012

Pity you won't change your Hat though! I what steve mentioned as Crossref We ALL Strive to help each other in any way there is plenty of good advice & help offered from everyone we help to make each other Life & look's stay happy & helpful.

by crossf, 8 Jul 2012

I agree about the hat, cross. That belongs to our Champion!

by Feline123, 9 Jul 2012

Thank Feline123 At least we all know who it really belongs to any way. it took a long time to earn it just making the number up for a few years until I done it all on my own, It still give's me a funny happy gut feeling just takes me back in time, really never lose that feeling whenever we talk about it.

by crossf, 10 Jul 2012

We have the mean's any way we all know.

by crossf, 10 Jul 2012

OK folks I will

by fish1chips2, 15 Jul 2012

Bless you fish1chips2 :)

by serena1, 15 Jul 2012

Well done, fish1chips2.

And it really suits you!

by Feline123, 15 Jul 2012
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If you are tired and that is understandable, you might benefit from phoning and asking the duty social worker from your local council to come and see you at home if you can't attend for an appt just to have a chat. Perhaps they could find out and look into what is available to you to improve your quality of life meantime until you re-cuparate more fully.I mean both financial benefits, and practical help, occupational therapy in the community assessmen -that is to do with your everyday practical needs at home, physiotherapy in the community/assessment, help with your mobility etc. Also there may be a local ADVOCACY service, where maybe if you contact them, someone could speak to you and find out what is most difficult for you and liase on your behalf. I have heard that brain injury can still be improving over a longer time so hopefully you can look forward to more recovery.Also any rehabilitation can be facilitated by participating in appropriate activities locally. Lots of groups and classes or pastimes have concessions on cost which you may be eligible for.Self -help, self education about what is out there , and maybe support groups locally or online might offer you ways to become more autonomous too. Some physiotherapists have a special interest in particular groups of conditions so you sould ask your G.P to refer you to physio if not already being seen. Are there any specialist support Nurses in your area? ask your g.P to find out and refer you if suitable. Make sure you know when you are due for ongoing re-assessments wit your Consultant by phoning the hospital Out-Patient's department secretary.

by instinct, 9 Jul 2012

Also your bank should be able to send some one to your home to help sort out any financial stuff which you would like sorted, if you find it difficult to go to banks and stand in ques etc, or just want a visit at ome to attend to matters if you are feeling a bit below par anytime.

by instinct, 9 Jul 2012

Never knew a bank could do that instinct. I think people forget about seeing the bank in seeking advice.

by serena1, 10 Jul 2012

Yes Serena, My elderly housebound relative has someone come to the house by appointment to deal with some of her banking things selectively. Otherwise if routine, her appointed carer goes to collect her cash.

by instinct, 18 Jul 2012
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Ask your local Voluntary Sector if any volunteer groups do gardening, usually supervised by some one capable of doing so.Pone your local council for the number.

by instinct, 9 Jul 2012

More good advice coming from all quarters, anna.

I really hope some of this will get you some help, and that you are feeling better already having shared your troubles.

by Feline123, 9 Jul 2012

A trouble shared is a trouble halved!

by instinct, 10 Jul 2012

Definitely, instinct!

by Feline123, 10 Jul 2012

Well said instinct!

by serena1, 10 Jul 2012
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Welcome to the forum Anna.

I've only come across this discussion and I'm deeply touched by reading your words as i am when i read my good friend crossf's posts. You've received wonderful advice along with good wishes and I join them and wish you all the best for the future.
I sincerely hope you do become an active member on the forum and you can come as little or often as you like and join in we do have good banter and sometimes it can take your mind of everyday life a bit if escapism or you can air your thoughts and if we can help we can give you opinions which can make all the difference to see things in a different view.
Please keep us posted on this situation. Wishing you all the best. Take care.

by serena1, 10 Jul 2012

You put it, say it, so well Serena, for all of us
Time to change the hat!!!!

by fish1chips2, 15 Jul 2012

Thx fish1chips2 your a good guy x

by serena1, 15 Jul 2012
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Yes Fish1chips2, I appreciate the change of hat it was something that went on before you became a member so no one can call you really & after all your entitled to your own whatever it just came at the wrong time I am sure you already know that though & as you say we can all help each other even if it's just for a laugh it does make a big difference on the day especially if your down a bit.
I am sure that reading how my life was you can understand where I was coming from & thank's for appreciating that at least, I have not been so well over the last week or so & some of that is down to Bur-creates too, as far as physiotherapists go they were stopped by my Consultant after they made me try three times & ended up by telling me what to do & even though i said if I do that i Will definitely pass out straight away (& it was the Usually thing "you can't say that unless you try it 1st).
They went to walk away & I said to them well i will do it as long as one of you stand either side of my bed "they could not understand why I wanted that so I told them because you will both need to catch me before I pass out & fall out of be" True enough that is what happened I knew it would kill me with pain enough to pass out with & that is what happened, So around 4-month's later they come pestering me again & would you believe it went exactly as before they extended my time in Prison OH SORRY HOSPITAL (I have never been in any prison but three years I can tell you it felt like it to me.)
Any way it's no good going through that I would not wish that on my worst enemy even, So on my notes in every place they have a note on "No physiotherapists allowed to Touch me" even then the one came around about six months later talking to me about some water thing he wanted to try & it was just as my consultant came to see me & he sent him packing in no uncertain term's I never knew such a nice Consultant had it in him as he was well respected.
When you live out in the stick's so to speak It is like asking for gold for me to get a special cushion that I need as I use a heavy duty.
Tens machine which is on me when I get up until i go back into bed & trouble is when I get extra pains I turn it up to much & then I have burn's all over my backside & then it hurt me in bed any way there is always someone worse than me.
I know that for sure all the time I spent in Hospitals around the country, I take it as it comes you cannot do anything else about it but it's very hard to make plan's to do or go any place because you never know when I am going to have to stay in my bed

by crossf, 17 Jul 2012

My cold doesn't feel bad at all now when I ready your post crossf. What a brave man you are. Your wife and daughter must worry about you. Please take care and get help when you need it... Remember to ask crossf rather than suffering...

by serena1, 17 Jul 2012

Dear Crossf. I have not been on this evening [Monday] as i have been watching the debate on 'Adult Social Care' This is very very important to members of the forum. I think I sent 10 emails to MP's
To try and get them to work together ASAP so that the most needy + vulnerable get Quality Care, be able to live in their own homes [rented or owned ] till they die.
Having done that I watch about NHS rationalision , a 'post code lottery'
now I know that you are having a bad time, if I can I will do my very best to help you.
Ian

by fish1chips2, 17 Jul 2012

Good morning croossf, I hope you had a reasonable night My nurse friend tells me that you are in lot of pain

by fish1chips2, 17 Jul 2012
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