Disability & Caring : Lots going on lately personally & politically

Lots in the news affecting those who care for the disabled, recently. Very easy to get very depressed with the constant stream of ill thought out comments and policies coming from the government. One light in the gloom was the debate in parliament about the daily struggles of family carers. The ministers that spoke seemed to "get it" , but I seriously doubt whether the kind words and recognition will turn into concrete policies and finances to help those in such a position. They talked of making sure respite was made available for carers, this is very important but with competing demands on council budgets likely to get squeezed out, yet again. I for one have been told that if I am able to get back to work , even though I will look after my Husband at weekends solo my allocated respite will have to be used to cover any out of course work shifts, I do not think the politicians had that in mind when they coined the term "RESPITE" .

Benefits & Support :
I am glad to see that government is having another consultation regarding the new 20m rule for proving whether you are able to walk unaided or not, being the ruling factor as to whether you will be able to get access to the mobility scheme or not. Now whether they will listen or not is another story. Does not directly affect us as Hubby is totally immobile. The bedroom tax saga rolls on with , ill considered comments by Lord Freud in a letter he has written to local councils regarding redesignation of rooms as not bedrooms and the charges for rent there after, made me extremely angry as it will indirectly make the building and redesigning of homes for the disabled financial suicide for Housing Associations. More thoughts later re housing.

We now have one good care worker allocated to us, still very slow process finding the others we need, but I guess we will get there. No doubt there will be some last minute crisis management, NHS good at that, when I get a new job.

Our Fresh Wheelchair Accessible Vehicle:
What a disappointment, our second hand Kia WAV Evolution has been. Has cost us a lot of money in replacing the fuel pump, now the reversing sensors have gone. We bought a "Dog" as my Hubby would say. For those thinking of buying such a vehicle by the way, yes loading / unloading is space efficient, but not easy as you end up crawling all over the wheelchair users to connect all the restraining straps. Once the user is in place you can not open the passenger door to get to the left hand side of the user, which is a pain in the neck. The front straps never get tight enough to be totally safe as they have to be fed around the wheelchair sides from the anchor point because going in a straight line would mean them flipping up users footplates, hitting their legs or  feet. Oh and being a diesel, yuk! noisy, non responsive piece of crap.We have nick named it chugger. I would personally recommend a side loading up front passenger, like that of the Chrysler Voyager as being a better but of course more expensive option. As soon as I am back at work we will be looking to get rid.

Housing:
We are still stuck in our unadapted first floor flat unable to convince anyone who can do something for us that it is totally unacceptable. To recap, we have a wet room that is so small Hubby gets his feet regularly banged on the toilet when sat in his commode. None of the doors have been widened. We have carpets which are a total pain for wheeled conveyances. A lift the only access, that is too small carer plus user can not easily travel together in. Also too small for ambulance trolley. The building construction is such that no ceiling / wall hoist can be fitted. The rooms are too small for use of an electric wheelchair plus have any furniture, the bedroom likewise and care-workers can not access all around the bed, to use sliding sheets etc. We have no where to put the vital for his long term health tilt table that he needs. When back at work I will find a corner in the room we use for storage, as none is provided by the HA. Our flat is positioned right over the badly supervised bin room, where during the hot weather, we get the smells & flies it produces. Our next door neighbour is a heavy smoker and we have the pleasure of breathing in her second hand smoke all day, even though OH already has breathing problems and I have a history of bronchitis. The kitchen is totally inaccessible. The flat is dark contributing to OHs vitamin D deficiency and his danger of breaking bones.This leads to poor old OH being strategically placed in a spot in the front room in front of the telly, as moving anywhere else in the flat is a logistical nightmare. What a way to treat our disabled. So I follow with great interest the debates at the Housing 2013 this week on twitter. Some how we have to get the local authorities to wake up and build more wheelchair accessible bungalows. If it means building in US style timber framed buildings so they can be bigger without costing more then so be it. I would love to live in an american style home, they are warm, cosy, open plan, accessible and fit for purpose.  http://floorplanner.com/projects/26022765-new-floorplan/edit#assets










  

My Story - Updated.

My story in brief

I have been a carer for most of my life. I was born into a household in crisis. On the day I was born, Father was recovering in hospital from TB, my eldest brother of 2 fighting for his life with TB Meningitis. Father recovered, but we had to move home as our lovely cottage in the Quantock village of Holford, Somerset had to be fumigated. 

Mother struggled for the next 5 years with the help of her little helper, me, to keep the now severely mentally handicapped brother at home. One of my first memories at age 3, is of bathing my brother with turds floating in the water where he had messed himself. After our youngest sister was born in 1972 Mother made the painful decision that that she could not cope with looking after three children under the age of six, plus  l that was so ill. Eldest brother was taken into specialist care. The birth of her forth child was very complicated, she died on the delivery table at one point and soon after returning home it was obvious that she was having some sort of mental breakdown, the stress of seeing her eldest son depart from the house and the birth took its toll. Mother then spent most of my childhood in and out of mental hospitals, had inhumane amounts of ECT treatment , had her not inconsiderable intellect dulled by various psychedelic colourfully named drugs.This left me and my father to cope at home with the other two kids. I learnt how to cook from a very early age, wash, clean and all the other household stuff for the family to get by, while Dad concentrated on bringing home the family income such as it was.By the way just because eldest brother was not at home he was not forgotten and had regular visits from all of us, still a big part of our dysfunctional family.

As I entered my late teens I found the duties and expectations at home suffocating so left home at 17 to save my own sanity. I spent the next 20 years of my life building up a portfolio of educational certificates and work experience. When I worked it was in safety, project & engineering management. The highlight of which, 2004-06 reconstruction work in war torn Iraq, caring on another scale all together. 

June 2007, over the space of a few terrible days mine and my husband’s lives were torn to shreds, he became ill with a Staph infection that left him partially tetraplegic. Concurrently finding cancer on his right kidney. The remainder of that year was spent in various hospitals, me living like a hobo and him fighting for his life.

2008 we decide to try and resume our plans heading off to Australia, but by May 2009, a pressure sore caused by a spider bite and Hubby’s deteriorating health mean that we have to make the hard decision to return to the UK.

Back in the UK, homeless, penny-less and  somewhat surprised that looking after a Tetraplegic in a hotel is not considered an urgent situation. The real battles begin with a UK health system that is not geared up to help when you don’t neatly fit into one of their boxes. Hubby couldn’t be just a run of the mill tetraplegic he had to have complications with taking oral medications, none helping with his progressive, aggressive, spasticity and spasms.

Even though Hubby qualified for fully funded continuous care agency provision in October 2009, I am now looking after Hubby 24/7 day in day out. He does not sleep at night and therefore neither do I. His inability to tolerate hoist use, constant physio demands, forcibly straightening his limbs to relieve the pain of muscles that seem to be trying to rip his body apart mean looking after him is a very physical job.

I became so desperate at no one listening or taking action regarding our plight that in July 2010 I take the drastic action of going on a hunger strike, which got national media coverage and the local PCT did start to help a little. Since then we have had sporadic carer coverage, but most of the time I am still my husband’s 24/7 carer, still here, battling a system that does not want to listen or act to ease both our suffering. 

During this time being housebound I have kept sane by developing my social media skills, trying to get help for myself but also trying to support others in similar situations.

Since writing my story in brief in October 2011, I have lost my father to cancer May 2012. Again the local services let us down, I begged for 4 months for respite cover so i could go visit him, nothing doing. So I missed my own father's funeral, thats what it is like in the UK today. 

Today as I write things are slightly better we working with a new care company and they have managed to supply one good carer which means i can slip away for a bit during the day, with the promise of more soon to make a team, meaning I can now look for work with some confidence that OH will be looked after at home.