New carer Waiting for DLA & can't afford to live At moment
Posted: Sun Dec 11, 2011 7:48 pm
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
thank you John & melanie