Losing the physical self

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 came out of hospital for Christmas on the 17th and we have had a very indulgent time since then. It’s been a case of getting some respite after the onslaught we have had. We can only have a small tree this year due to limited space in our lounge. As you can see also from the picture of the presents that Anita had last years presents from the relatives to open as well!

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.
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Over the time in hospital an excellent collection of soft toys has been built up. Anita has a thing for sheep, or I should say toy sheep. Thanks to all who have sent them, some are not in the picture and some went missing at the hospital. I don’t know what she will do with them, maybe they should be raffled off for charity but that’s up to her. Some of them have been given names after people in the hospital. Top left is called ‘David’, top right is ‘Dennis’, bottom left is ‘Jim’ and the goat front centre is ‘Val’. The most famous in the bunch is the chap with the horns on the right. He was given the name ‘Painkiller’ and has been with Anita through all her trails and tribulations. When Anita was so ill that she had a problem communicating ‘Painkiller’ had a sticker on his belly that was used to tell the nurses that Anita needed painkillers!

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

We decided to get a ramp installed as soon as possible to make things easier. We had been given a portable ramp that was very heavy and involved a lot of running around, not much fun when it’s raining. The person doing it had a problem that he had to get round a drain so the ramp had to turn. You can see the finished results in the picture. I would recommend anyone who is in a similar situation to get it done asap as it has made life a lot easier. For wheelchair use the ramp had to have a saftey curb at least 4 inches high and no more than a 1/12 rise.

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.

Anita has occasionally tried knitting. She says she is knitting a square. Seems straightforward but with brain injury it is like threading a small needle with a chain! She asked for some knitting equipment a while back because a former work customer had told her how she had used knitting to recover from a stroke. The first 3 times she tried to knit she exploded in frustration of not even being able to complete one simple knot (or whatever they are called). She had no movement in her left hand. Eventually over time she completed one knot but today she completed a whole single line of knitting!

Yesterday we had a home visit from the OT and a local OT responsible for the provision of equipment in the home. We have so far been supplied with a portable metal ramp and two commodes. The second one has feet that grip better and removable sides. They were here to advise us on how we could best adapt our home. As often can happen in informal settings something unexpected can come up. It transpired that staff at the hospital had already talked about Anita’s possible discharge and the fact that it’s not necessarily expected that she will walk before then! This was a body blow and not something I was ready to talk about in the context of a home visit.
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