I have been considering writing to you for some time but given the circumstances I have lacked the emotional strength.
I appreciate that you must get multiple requests for assistance every day so I will keep this email brief and put you in the picture of our situation. To say that I am DESPERATE for assistance to keep my husband alive is the biggest understatement in the world.
This is my story, as published in the Caerphilly County Borough Council Carer's Support Network newsletter, and soon to be printed in the South Wales Argus:
Steve and I first met and got together in 2005. At the time Steve was a serving member of the RAF regularly travelling across the world with his work, and loving every minute of it. It was while he was serving in northern Afghanistan in 2006 that he had a minor accident, with massive consequences.
Nearly two years later after an MRI, it was discovered that he had a broken vertebrae in his spine. The first operation on it worked for a very short period of time, the second - even shorter. Steve started having problems with his legs and, hearing and balance shortly after that.
April last year Steve's illness was so bad that he was hospitalised for the first time. This, for me was terrifying as he was such a big, independent, feisty, and handy bloke to have around. It was just a few months earlier that he had finally conceded to having a walking stick to help him get about. For him, that was the biggest loss of dignity. The first one.
We had to move as we had inadvertently bought the least suitable house we possibly could have. Of course we couldn't have known. Prior to Steve going in the first time I'd had to have started to do everything. I knew it was bad when he didn't argue with me about stopping driving. It became very difficult for me to do all the school runs, food, paperwork, driving, every day I would discover a new job that I hadn't thought of that I needed to take on. I felt very "put upon", very scared about the future and how I would cope, not to mention how Steve would do.
By the second hospital stay, I was doing things for him that I had never done for anyone before. I often thought "how on earth did I end up here?" and as the realisation that I was going to have to change my goals and expectations about my most personal and precious relationship. I couldn't longer expect the type of things my friends could.
I had to give up work, Steve couldn't be left alone for long periods and I had so much to do that it was impractical to carry on, I quickly realised that the overwhelming vast majority of people are terrified by disability, and it became quite clear that some of our friends and family couldn't cope with it. I found (find) this incredibly frustrating and sad because family and friends are supposed to pull together, but they don't always. Caring can be very isolating.
A few months ago, I was feeling very alone, unsupported practically and out of my depth. It would have been very easy to just get deeper into that state of mind more alone and frightened. It was at the same time that my best friend saw a poster advertising a carer's event that I had missed already. She took a photo of it on her phone, and I made contact with Carer's Support Services at roughly the same time as I made contact with Social Services. When I first rang through to Hayley, I was on the verge of tears, and biting my lip - things were really difficult. I agreed to go along to the up coming Carer's Pamper Day, despite the fact that I didn't really want to. I knew I just wasn't in the right frame of mind - precisely the time you need to act.
When the pamper day came, I dragged myself up, put my make up on (soon to be regretted) and made my way up. I stood in the car park and cried. What was I doing here? I should be at home, caring for Steve, or doing something for him. I'm not a carer - I'm just a wife with a husband who is disabled, I gathered together everything I emotionally had (not a lot) and walked in. I met the organising ladies that were very welcoming, and promptly burst into embarrassing floods of tears repeatedly through the session!
Currently, we are in a very different situation. Steve was unsafely discharged from the Royal Gwent Hospital around 20th June, he has been re-admitted to Ysbyty Ystrad Fawr - 3 weeks ago tomorrow.
Steve has now lost virtually all of his bodily function. I am currently studying the Mental Capacity Act 2005 as his cognition has now altered such that he is no longer able to retain information for any period of time, and has been recently delusional. The nursing staff, while utter angels, have not noticed his cognitive alterations as the ratio of staff to patients is such that they have no time to notice. The ward Doctor is so keen to get Steve off his ward that he seems to be resorting to over looking basic information and constantly putting pressure on Steve to go home - Steve then transfers it to me.
The Doctor perceives that Steve's needs are not "nursing". He must be hoisted from his bed with a staff ratio of 3:1, he is incapable of administering or even prompting his own medication, one of which is morphine. He requires help with eating, washing and can no longer shave himself or even pull himself up on his bed to put a clean t-shirt on his CHC assessment puts him at a moderate/high risk.
My husband is 43 years old, the consultants appointments are 4/5 months between visits and I am convinced that he will be in a vegetative state before the next appointment. He has not been MRI or CT scanned in nearly a year despite 20+ weeks in Aneurin Bevan Health Board hospitals - I'm pretty sure that Nie Bevan is turning in his grave.
The Facebook group I have set up to document my fight is: https://www.facebook.com/
And the blog I am writing about this is www.fightingforsteve.blogspot.
We have been featured in the press on numerous occasions and am happy to provide cuttings or links.
I am hoping for a prompt response and your support. Is this too much of an ask? I really hope not.
(*Only a FEW details removed to preserve Steve's dignity)