Losing the physical self

I have been depressed now for about three weeks and left the rehabilitation hospital as I feared for my mental health. It’s bad enough dealing with the physical effects of brain injury without going mad as well! RH wanted me to accept my limitations and get on with life, but I was not happy with accepting the way I was and felt I could improve. I have a lot to deal with and worked on my own face, voice, writing arm and leg at RH and can continue at home, although my return hasn’t been easy. I am sure RH thought I was in denial because I refused to accept the way I was, but that isn’t the case, I just want the chance to push myself and continue to improve in the same slow way as always. I don’t expect to wake up one morning and run up the Eiger, but I do expect those rehabilitating me to be positive in their outlook. Hope and belief are more important to brain injured patients than supposed realism.

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!

Anyone who knows anything about brain injury and disability doesn’t need to be told how difficult things can be. One of the difficult things for patients and relatives to get to grips with and sort out is any benefits or entitlements they should be getting. It has become apparent to me that many people miss out on their entitlements. With this in mind I have added a checklist of information to the useful section of the website, most UK based people should do themselves a favour and work through this list. I will add some more information later about paying for carers.

What is most galling to me is that the worst affected are the most vulnerable in our society. Those that have suffered brain injury that haven’t got people around them in their time of need. I know that the government support systems can be a help but it is fragmented and differs depending on where you live. Not only do people have to cope with the injury but they are expected to fill out DLA forms and much worse after a major life change find their way through a complex set of options. All this when they are already at braking point.

I think that the goverment wesite directgov is a very good step forward but being a web design professional with the user utmost in my thoughts I have to ask myself if it’s not possible to ask people to input answers to a few questions then tell them what they need to do. It’s simple interactivity based on the premise of giving each individual a different response, it’s what the web is good at!

Before I go any further I would like to say thank you to Anita’s physio’s and that I appreciate what they have done to help my sister. But for the rest of you����.

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.
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I thought I would write this is an effort to help those who are family members of a brain injury patient. I would like you all to know that the emotional roller-coaster that you are on is shared by all of us who have a loved one with a brain injury.

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.
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Anita has decided she had had enough of staying in Rayners Hedge and left tonight. She had come to the end of her tether after 10 months in there. It wasn’t just that she was in one of her down moods but that she was very determined to leave. From my point of view I have always thought that it was my responsibility to maximise her recovery with respect to her gaining the maximum independence possible. Knowing Anita as well as I do she won’t ever take well to having people do things for her. Therefore I have been determined that she gets as much chance possible to improve her movement and RH was the best place to do this. I guess there is little point though in staying in a place that is depressing her so much. She was due to leave RH in March anyway but she has now come home with no support structure in place. Her care and rehab will take some time to sort out. I would have preferred for her to have gone through all the correct procedures for discharge, I pleaded with her but once she makes her mind up she is very resolute. Ultimately she is the one that knows what’s best for herself and I will support that completely. She is aware of the knock-on effects of such a move.
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I have depression! Not surprising you might think, considering what I have to put up with, but it’s the most miserable part of getting well again, that no one talks about!
I get depression about once a month and feel very low. The Dr’s have upped my anti-depressants, but I still get low and moan at everyone, including the nurses, the therapists, the carers and my long suffering husband!
The thing about depression is you have no control over it. Everything seems black and suicide seems the easy way out! You think you can stand no more and can’t go on. Even though you know it’s a chemical imbalance, you can’t pull yourself together. You try your hardest and use all your positive thinking strategies, but nothing seems to work!
I have concluded that when I am in the middle of a black mood |I will just have to ride it, as I have tried everything else to cheer myself up!

I thought it would be useful for the record to have some video of Anita’s arm movement. You can click on the thumbnails to view the videos. It helps to demonstrate some of the difficulties involved. The first four videos demonstrate reaching for face cream and deodrant, the last video shows that Anita can reach up to her right shoulder now. It has taken a long time for her to go from not moving her arm at all to where she is now in the video. She is still along way from having any real functional gains. When I am supporting the arm I am only supposed to take the weight of it. Although it appears that I am doing the movement I am actually trying to keep that to a minimum! When trying to retrieve something as simple as the toiletries featured she has not only to contend with pushing her arm outward but she has to open the fingers and grab. When it’s as tough as this it becomes apparent just how many actions are in the one thing. She needs a perception of where the object is in space in relation to her hand. She needs to do several things at once which makes it hard for the brain to process. The right pressure has to be applied to objects to get the correct grip.

There was another family meeting on the 1st February and pretty much the whole meeting was now about Anita’s discharge from Rayners Hedge. I would have thought that such a process could be demonstrated with a flow diagram and a checklist to sign-off. If such things exist then I have yet to see them. For over the last 4 months I have continually stated that Anita will need to continue her specialist neuro physiotherapy when she goes back home to Milton Keynes and I have not yet received a satisfactory answer. When Anita moved hospital even though Milton Keynes is a large city she had to go to Aylesbury to get the necessary services she needed. That fact alone has always made me a little sceptical of what can be provided on her return. I think there could be a shortage of services in Milton Keynes! I have sent a letter to various staff voicing my concerns, you can click on the link at the bottom of this post to read it.

It’s a simple fact that no one knows just how far Anita could progress but if her physical therapy is drastically cut then it’s obvious it won’t help. All the government policies talk about the importance of independent living and getting back to work yet it is an extremely sad fact that it is not backed up with resources.

I have grave concerns that the system can encourage you to give up and not make the most of the potential you may have. The desperate desire for Anita to return home is set against her desire to improve her movement. It’s even sadder that my stand on this issue has caused Anita to remain in hospital because it’s not nice to be there for 15 months but it’s still the best place for her. To replicate the physio she gets at Rayners hedge at home would cost around 250 pounds a week so it would be interesting to make a cost comparison with her stay in hospital! If she becomes independent in the future the savings for the cost of her care over 30 years would be considerable.
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