New carer Waiting for DLA & can't afford to live At moment

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Hi All, My wife was hospitalised in mid May (due to unexplained fits), here health got worse (over the next weekd,fits every 5-10 mins & unable to breathe unaided) & she went in to organ failure & was on life support in ITCU. She remained there (they couldn't find what was wrong) there for 3 months & spent a further 2 months in HDU & a medical ward. We only found out the cause (Neuroleptic malignant syndrome) near the end but NMS doesn't really give any long term effects when i read up about it. She has been left with no use of of her lower left leg (constant pain), (memory short & long term), speach & swallowing problems, unable to walk except to shuffle (dragging her left leg) using a wheeled zimmer frams more than about 20 steps indoors on level ground. Her motor skills/manual dexterity is also very poor. The ITU did say long term Intensive care can take a long time to get over both mentally & physically, as you'd expect due to muscle wastage & the trauma. The main problem is left foot & lower leg which the hospital say is all due to drop foot. The trouble is two nurses dropped her by trying to support & walk her Instead of using the hoist) to a chair 3 days after coming out of intensive care where she had been immobile for over 3 months. Her legs gave way & her toes & left foot bent backwards as she collapsed. Apart fro 1 xray they refuse to look at it further & say its all due to drop foot & will only prescribe copious pain killers & lidocaine patches which do nothing. She can't bend her toes/foot & the calf muscle has wasted away. Despite doing the exercises they prescribed (causing even more pain) its not improving & the pain is getting worse & near constant. We understand the principles of drop foot & that it takes time to overcome its effects. What worries me is that until she was dropped she didn't have these problems or accute pain, only weakness & large bedsores on her heal. As the hospital refused to consider that dropping her has caused nerve/tendon damage they won't include it in the report they give the DLA. I've had to give up my work & business to provide 24hr care for her as she has so many falls (plus needs help putting splint & adapted shoes on to use the walker) just getting the 5m to the toilet. She can't make a drink or food for herself (wheel chair isn't suitable to use in house) & still has problems using & picking things up such as a remote control, she wouldn't be able to prepare a meal or drink even from a wheel chair & struggles even with cutlery, a spon is the only item she can use. At the moment we only get income support which only leaves £40 after gas & electric. The phones essential but direct debits are bouncing (causing bank charges)l eating in to our benefit further. I can't cancel them (& when due pay with card) as the phone is restricted if the direct debit doesn't go through or is cancelled. DLA was applied for in Sept, they sent a letter saying they were waiting on DR's reports in early Nov. I contacted the ward on the 14th of Nov & they assured me that the report had now (i assume around then) been returned, the DLA wrote on 24/11 saying they still hadn't been able to give us a decision & would be in touch when they could. I gave them the Social services (Occu' therapy) workers name (2 diff' ones have been out, 1 after 4 weeks the other after 7 weeks of her coming home) & details as they had seen her recently & who were shocked she had been released without any care package. Despite their concern they refused t make any adaptations to our ground floor flat (mel can't even get in/out of the bath) due to the cost & amount of steps to our door. We are trapped (takes 2 to lift wheel chair down steps) in a house (we are on a hill & can't get anywhere once out) with no heating (gas ran out-pre payment meter) at the moment & the bills/debts are snowballing. I can't leave my wife for more than 30-45mins & can't ring out on the phone to get advice/help. We are so worried & you'd appreciate depressed at our situation. The Dr wouldn't come out (just increased her PREGABLIN for the pain, plus I've had to remain in every day (8am-6pm) as thye won't give any idication of time day, week whne the district nuse is going to come to administer the Flu vaccine. Sorry for the long message but I don't know where to turn & can't carry on like this for much longer. Any help advice would be very welcome.
thank you John & melanie
First things first, John, contact the Helpline as a matter of urgency.

Second, welcome to the forum!

Third, ask for an urgent Community Care Assessment and Carers Assessment from your local social services. It's alright the OTs being shocked that no help was in place but they haven't exactly moved much to put it right, have they?

There are other things I could comment on but you need to concentrate on the basics for the moment.
Welcome to the forum John.

I second all that Charles has said. Hope you get some proper care and support soon.

Take care
Meg
The hospital will have had to write an incident report about your wife's fall and what happened.(Will have been completed by by nurses who caused the incident). Ask for a copy of it. (I believe your wife would be entitled to it under the Data Protection Act.)
I agree with all that has been said already.
Hi John and Mel,

Welcome to a small space of sanity.(Well... Image )

If you haven't called the hotline yet,try and find a way to do so! Please! They can help and advise and point you in the right direction to get help.

The system is a nightmare, and one you don't need when a tragedy like this is dropped on you. But sadly, you have to deal with the system.

You can try applying for a Crisis Loan or a Community Care Grant (which takes longer) if you meet the benefit criteria. You should NOT be left without heating. Details are here: http://www.direct.gov.uk/en/MoneyTaxAnd ... G_10018856
The number is at the bottom... call them, they can do a same day payment to help with immediate expenses.It is a free call from BT landlines and many mobile providers. Get them to call you back.

Also contact your local office of The Princess Royal Trust for Carers.. if you can't phone, they will have an email address. They can provide practical help.

DO get in touch with your local Social Services Adult Care. Both you and your wife are entitled to an assessment. They can also, if you nudge them, refer you to local and national charities that can help. (No, you shouldn't have to, but when it is this desperate, needs must. Say goodbye to your pride).

Turn2Us are a charitable grant and benefit search, with benefit eligibility checks online.

Above all else, stay in touch here and don't give up. We've all been through the system, one way or another. We know how dire and hopeless it can feel. You may feel alone.. but you are not.
PS
You may have tried already, and I may be teaching granny to suck eggs, but if you haven't done so:

Make sure your GP knows you are a carer.

Try your local council.. they often have debt counsellors who will deal with your debts and bills, and they have more clout to sort sensible repayments for you.. and can often get a good breathing space for you. At the very least, write to them all yourself and explain.

Contact your gas and electricty suppliers: they all have some form of social tariff, a reduced rate or help for people in trouble because of illness or disability. If you have outstanding bills on the prepayment meter they can reduce the amount taken weekly quite drastically as well as put you on a lower tariff.

Selling spare stuff on ebay is easy and a good way of raising cash without leaving the house. Someone will buy. (My business suits and evening gowns fed us for months).

As far as the foot drop is concerned, two years on my son is still combating its effects. It takes time.See if you can get a referral to surgical appliances.. there may be a brace that might help.