We returned "home" on the 20th September, 3 months to the day that Hubby was admitted to hospital. I put "home" in inverted commas as we have never made this place our home. It is the place where we sleep, eat, the place, the authorities have hidden us away in the community, so that they can forget we exist. My usual mantra, Care in the Community = no Care at all.
I have resumed my search for accessible housing. The council list never seems to have anything suitable, the rooms are always too small to accommodate safely the equipment we need to use. We return to the stench of cigarette smoke from our neighbour which has permeated into all our fabrics in our flat. The Liaison Nurse from Stanmore, visited last week and tells me her clothes stank of it on her return home. I wonder what is that doing to Hubby's already fragile breathing, and also to me the daughter of father who has recently died of lung cancer. The Housing Association has put a lemon fragrance air freshener in the hall way, but it doesn't eat the toxic smoke that is infecting and assaulting our lungs. Hubby has been trying to shelter his fragile back by using his electric chair even though it is very uncomfortable. We tried to use the new manual one supplied by the NHS but it is too big to use in our tiny 2 bed first floor flat. The bedroom door was the worse obstacle as it only just squeezed through. So it has been stuffed in the bathroom with the hoist we rarely use because of lack of space and carpets.
Hubby has now hurt his right ankle banging into the many barriers to his progress in this flat.
So rather than fester on all of this I write a letter to the council setting out why they need to move us to more suitable accessible accommodation . Not heard anything from them yet which either means the letter has gone in the bin or maybe someone might review our case again and help us find somewhere more suitable.
There is another dimension to our unsuitable living arrangements in that looking after Hubby using careworkers is near impossible as they don't have access all around his bed to use sliding sheets and the like. Using a hoist will also be difficult for them as well, because of the lack of space and the carpets.
This causes a vicious circle as without careworkers I can not get back to work to stand a chance of providing a suitable home for ourselves. This is downward spiral that the politicians don't seem to understand, it takes someone giving you a break in one area to ease up a lot of the other challenges.
Our case highlights again the need for integrated services for the disabled. Medical Need+Housing+On going Care.
Getting back to politicians, I was very dismayed to read about proposals to stop housing benefit to the under 25. I write here my own example of how having the right to this as a 17 year old, helped me get away from a dysfunctional family life, started my career and saved my sanity.
I tried to stay on in the sixth form at school , but found out that due to my family caring duties, the strain of studying for my O'Levels I was burnt out and could not devote enough energy to my studies. I therefore made the decision to look for a job, which I was very lucky to get as an entry clerical post in the civil service in a benefit office in a town 20 miles away. To grown up readers with cars that does not sound a long way away, but to me that meant getting up at the crack of dawn travelling by train to start work at 8am. The train fare was extremely expensive, so I used to cycle to work as many times a week as I could, but soon realised that although I loved cycling it was not conducive to arriving at work fresh and ready for a days work. By the time I had paid my fares, food at work and given most of the rest over to my struggling family, I had very little to show for my efforts. I then decided that for my own health and well being I had to make a break of it and live in the town where I worked. I saved up enough for a deposit and with the help of my future husband moved to a bedsit in the town, just up the road from Margaret Thatchers fathers shop in Grantham. I had housing benefit help with the rent, but £60 per week civil service pay didn't go very far after paying utilities, so I usually survived on £15-20 (we are talking of the late 1980's) for food plus extra vegetables my hubby gave me. Even though money was very tight I was free from my dysfunctional family dragging me down, free to get my head around what I was going to do for the rest of my life.
M.P. Tebbitt told the youth of my time to stop whining and get on your bikes, so I got onmybiketoo .
So I beg politicians of today heed my story , do not stop the mobility of our under 25's they need more than ever today to leave their homes to find work, Housing Benefit will be an enabler for them to do this.