A person-centred service. People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Anita has recently had another home visit and the natural process for her coming home is begining. This stage has had a huge impact on Anita’s mood, whenever she considers home she faces many uncomfortable issues. She doesn’t want to be baby sat, dressed, etc, she wants to feel that she can have a more independent future. The dificulties of coping with this life change can make her difficult to talk to and she is not able to move on. I have been trying to get her to accept certain things, I have always been honest but that can sometimes make me the enemy.

Listening to Johnny Cash, not my usual fare but very fitting.

I hurt myself today to see if I still feel
I focus on the pain the only thing that’s real
the needle tears a hole the old familiar sting
try to kill it all away but I remember everything
what have I become my sweetest friend
everyone I know goes away in the end

The absolute worst thing you can do in intensive care is sit and settle to the beat of the machines. Hanging your emotions on the rythmes and sounds. You have to try and let it all unfold naturally and wait for official news from the Doctors. It’s easy to succumb to the all powerful rollercoaster.

This time around it feels even harder than the last. Back then my mind and love was pure, a settled fate awaited. Unsulled by the ambiguities of life. She wants to be at peace yet the wonders of modern medicine won’t allow it. I know Anita is more distressed awake than unconcious therefore I beg the staff to release her. She has taken enough drugs, however the combination is unpredictable. The posibility of further damage hangs in the air like a radioactive cloud.

10.40pm Anita has opened her eyes, it was all calm until now. As she awoke I felt the sharpest pain for her I have ever felt, her wish is denied and she could soon be suffering again. I go back to the bungalow and collapse into a dreamless sleep.

The thing is that all the options we have these days almost seem pointless. You know what the end result will be. She was due for an increase in her anti-depressant medication. The GP visit has at least speeded things up because she needed various tests before any increased medication.

She was so down at rehab yesterday that there have been more discussions with the psychologist, psychiatric nurse and GP. The option, if she loses it, is to take her down to A&E, leading to something that I feel won’t help at all. She has now also been given some Diazepam medication to try to give her some relief from anxiety.

Some of the things that make Anita special are now making things very difficult. It has been the mental side of dealing with her in this state that has caused me alot of anguish. The constant conversations I have had with her recently are starting to take there toll on my own mental health. There has been the odd occassion recently when frustration has led to me shouting out my frustrations. On these occassions I am not the best person to be looking after Anita. The more I was drawn in to her own depression, and the more I discussed it with her, the more I have started to feel ill. From a selfish point of view I have to try to do things that keep me holding everything together. It’s hard for anyone to understand just how much all of this can affect you unless you have been through it. It’s like building blocks of bad stuff that started with her time in hospital and those blocks continue to be built upon and eventually could topple.

An old man is walking down the shoreline, when he see’s a young boy in front of him bending down and throwing something into the sea. He runs to see what the boy is doing and see’s that loads of starfish had been washed up by the tide and the boy was throwing them back. There were many starfish, so the old man asked the boy why it mattered, as he couldn’t throw all the starfish back into the sea, so the boy looked down at the starfish in his hand, threw it back and said,’ It mattered to that one.’

It does matter, if only one person gets help from this website, it will have served its purpose!

I went to the local hospital by myself on Thursday, to the audiology clinic. I have constant tinnitus, accompanied by a ‘whooshing’ sound in my left ear and I am slightly deaf in both ears. I was told that everyone has tinnitus but only one in six people hear it, the secret is to put it ‘back into its box’ where it belongs, so you don’t hear it anymore! The brain apparently hates silence and will always seek out any sound. There are various techniques I can use to get rid of the tinnitus.I cut out caffeine, so no chocolate for me! Have the radio or something similar, on at all times so I hear something other than the tinnitus and not to sit in silence. I must also perform relaxation techniques and give other reasons to myself for the tinnitus, to con my brain into thinking there’s another reason for the noise and hopefully the tinnitus will stop! So I am trying all these things! Tinnitus is the least of my problems, but what have I got to lose?

I am fine at the moment and progressing nicely, but I know when the ‘depression’ strikes it will be all doom and gloom again! My balance, which is my biggest problem, is much better and I walk, well stagger, in the parallel bars and walking frame. I also stand a lot in the standing frame and a lot of work is done on my left arm in the hope it will become more flexible. I hope to go swimming, as I think the water will support my limbs, but that is yet to be organised.

I have received a few e-mails from various people who have seen this website and they cheer me up considerably. One of the worst things about brain injury is the loneliness, you feel you are the only person dealing with this shit and of course you aren’t. Although a lot of these stories are very sad, it makes me proud that these people are fighting on, you can’t let brain injury beat you, though it will try! I type this on the patio in the garden with the radio on in the background and Ronan Keating has just come on and in his words, Life Is A Roller coaster You Just Gotta Ride It!

Calmly serene, they impart repose,
to all those in suffering severe.
Sure devotion and sense of purpose,
when others fail, they still persevere.
When illness descends to dark despair,
sad spirits rise to their friendly smile.
In times of need they are always there,
the patient�s worst fears to reconcile.
With the staunchest hope and self-belief,
they administer to all in need.
And to those in pain they bring relief;
this caring, tolerant, selfless breed.

The merchandise can be bought here.

I think the sickness could have been caused by looking up close to a giant screen in the cinema. If you are in a wheelchair you have to sit near the front close to the screen. We went to see Sideways which I enjoyed as it’s very much my kind of film. It feels as if we are being penalised for actually enjoying ourselves!

So now I wait for RH to decide what my needs are. I am quite happy to wait as I know I forced their hand by leaving weeks earlier, but I can’t help but be worried. I fear RH will recommend what they know Milton Keynes can provide, not necessarily what I need! I admit I have a vested interest in getting out of this state quickly if possible and am not happy pottering along like this because the system thinks it knows how to treat me.

As well as not providing me with enough physiotherapy I resent having to pay for my own downstairs bathroom and bedroom! It will probably cost over £15k and there are lots of other things I will have to pay for that I wouldn’t have done if I wasn’t brain injured! We seem to be encouraged to pay through the nose because I have been unlucky enough to be brain injured. I don’t think enough is done for brain injured people, who are slotted in to the area of disability they fit rather that been seen as individuals who are recovering, however slowly!

After 10 months in Rayners Hedge my sister Anita finally signed herself out – to say she was depressed is an understatement.

Rayners Hedge is a rehabilitation facility for brain injury patients. My sister was assigned to this facility in Aylesbury because there were no facilities available to her in her hometown of Milton Keynes. My sister’s rehabilitation team consisted of an occupational therapist, and physical therapist, and a psychologist.

Over the ten months my sister has been receiving treatment at this facility she has made improvements. She has gone from having no movement in her left side to gaining some use in her left hand and arm and being able to stand, and take a couple of steps with help. In the first hospital Anita had braces/splints on her left arm and hand and also on her foot to keep them straight. These devices were supposed to be on for two hours and off for two hours� Was this done, no it was not. I know for a fact that when I was there with my mum we did it and when Howard was there he did it. I guess the nurses figure they don’t have to do their job if a family member is visiting.

Since being at RH my sisters therapy has consisted of writing exercises, and facial exercises (which she does on her own), but her main objective has been the HOPE of walking again. With this in mind, her physio’s have worked hard in getting Anita to stand and walk. And as of today, all of their hard work has paid off and Anita can stand and can take a few steps with the use of a quadrapod and assistance.

It has recently been brought to my attention that the neuro doctor of this facility had been contacted by my sister’s employer who wanted a prognosis for my sister. This doctor told the employer that is was unlikely that Anita will make significant functional improvements. If that is the case, then why have the physio’s in this facility spent ten months and worked so hard in getting my sister to stand and walk? Are they incompetent? No, I think not. I think these therapists do think Anita has the possibility of walking again� It may take years, but the hope was still there. To take away someone’s hope can demoralize a person. That doctor took away my sister’s hope and crushed her confidence. And why can’t she work? Anita has a physical disability at the moment she is not brain dead! And how dare he imply such a thing. Anita is perfectly capable of working� it is up to her whether she wants to or not.

During the last ten months Anita has had ‘counseling’ sessions and the therapist has been trying to get Anita to accept the fact that she will be in a wheelchair and it is something that Anita has to come to terms with. That’s all fine and dandy for a therapist to say, but this therapist doesn’t know my sister. My sister is one of the most independent women I have ever met and to take away her independence is the worst thing anyone could do. Telling my sister she needs to accept a wheelchair is not being realistic. And if this therapist had taken the time to get to know my sister she would know this.

In all honesty, I don’t think RH has been a positive experience for my sister or for any of us. Anita’s husband Howard has had to fight tooth and nail to get Anita the therapy she is entitled to, which is more stress than he or my sister needs to deal with. This facility has not been supportive of Anita’s physical needs and it has not provided my sister with any emotional support (apart from antidepressants). I think this facility has done the bare minimum for my sister and nothing more.

My sister, had microvascular decompression surgery in November 2003, as a last resort to relieve the pain of trigeminal neuralgia, a condition she has had for the last 19 years. The doctors explained the risks and said that there would be a ‘1 in 1000′ chance of something going wrong. Unfortunately, Anita was that 1 in 1000. Everything that could have gone wrong did. She didn’t just get one of the side effects to the surgery she got all of them.

When I heard the news that Anita was in a drug induced coma and in the neuro critical care unit to say I was devastated is an understatement! All the questions you want to ask but there are no answers to; What happened? What went wrong? Who’s fault was it? Damn bloody doctors are useless! All these things flood through your head and at that moment in time you are extremely emotional. I was not able to go to the hospital for my sister, which still haunts me to this day. My brother-in-law Howard has been at my sister’s side since the beginning and has been a mountain of strength for my sister. My mum and dad took the train down to be with my sister and talk to her while she was unconscious, it has been scientifically proven that coma patients can still hear. So don’t be afraid to talk to them, fill them in with the local gossip and even bring up the embarrassing stories of their youth! They can hear you.

Anita came through her coma and mum, dad and Howard were there for her. Anita’s only means of communication was an eye movement, which progressed into a hand squeeze. To hear the news that Anita was out of the coma, I was relieved. But the relief didn’t last. Anita developed one complication after another! Brain drains, tracheotomy, meningitis, eye infections, collapsed lungs, vomiting and TWO doses of MRSA! the dreaded superbug that kills over 5,000 patients per year! I had to ask myself, what the hell were these doctors doing? Did they actually go to medical school? Of course, I was being irrational. I wanted to blame anyone I could get my hands on. Unfortunately, complications are part of brain surgery. When anyone has brain surgery there are going to be complications of some kind. Though I have to say, MRSA is not one of them. MRSA is due to unhygienic conditions, something you would not expect in a bloody neuro ward!

The last fifteen months has been a roller-coaster of sadness, relief, frustration and anger. I am currently in the anger state of emotion – not just because of the complications with my sister’s surgery, but because of the rehabilitation therapy, or lack thereof that she has been offered. I will cover that subject in the ‘Rant’ section.

Just so you know, all of these emotional states are a normal process of what a person goes through. And you have to go through them to keep sane and emotionally healthy.

Anita contracted a cold before Christmas and came home with low morale partly due to that and partly due to some depression. As it cleared up her spirits lifted as she got into festive mood. Before Christmas she had another visit to the hospital this time regarding her hearing. She was tested and the results showed she had slightly less than average hearing in both ears. Her right ear also showed problems with sounds at higher frequencies. That could be one of the reasons that she sometimes has problems differentiating from sounds at various distances. We will go back in the future to see if anything should be done.

My memories of last Christmas seem to consist mainly of Anita throwing up. I seem to remember it being at its worst on Christmas day. So for this year it was always going to be an improvement. For me I think that there is a spirit about that you can feel over this time. If you can open yourself up to it then it is pure magic. Even though I seemingly had nothing last Christmas (except long drives and hospital visits) I had everything! If you cut all the stuff out I reckon you give yourself more chance of getting those special feelings of love and peace that’s all around and what’s more it’s free. I just wish I could control those feelings and turn them on like a tap but I can’t. The look of the tension on the faces of the shoppers in Tesco this Xmas shows you all you need to know about a happy life.

Anita has also received lots of flowers and cards and we would like to thank everyone for their continued support.

At the same time we decided to have some decking done at the rear of the house. This means that I can push the wheelchair outside without any problems. For people thinking of having this done it cost around £1200.

That night I got more down than I’d ever been. I couldn’t get to sleep and as I talked to Anita the helplessness of the situation came down on me. For the first time ever I thought if we just went to sleep and didn’t wake up again it may not be that bad a thing. The downer didn’t last long but I have subsequently noticed that my easy going nature for the last 10 months has been replaced by a steely determination to improve things for Anita. I don’t sleep as well now and at times feel ill and exhausted but to be honest this is more in keeping with my usual personality. Given a cause to fight I become extremely driven. It’s not healthy and I am missing the easy going side but like I said earlier I am not in control. There is also an awful amount of stuff to sort so I need to get on with it.

With regard to the house adaptations various thing were talked about. The first thing is to remove the sofa bed from the lounge and install a single bed. This will help to transfer Anita and be higher off the ground when moving her. The portable ramp is heavy and hard work to keep moving it to the front and rear so a permanent ramp at the front of the house with decking in the rear will facilitate easier wheelchair movement. Bigger suggestions involve knocking out the porch wall so that the stairs can be made to come straight down so a stair lift can be fitted. The only problem being it’s a supporting wall. The bathroom which contains a bath would then need a complete overhaul. We had just got the house exactly the way we wanted it so none of this appeals. Another option is to convert our garage to a bedroom and wet/bathroom. It is very small but at the moment it would be the only way Anita could get a shower if she was home permanently.

Footnote: We had an informal assessment by the council to see if we would be eligible for a ‘disabled facilities grant’. This would mean they would help out with the cost of home adaptations. We couldn’t get any help because they look at joint income and anyone with any kind of normal salary has no chance. It does mean for us we have to think hard about any major works as we will get into debt.