Losing the physical self

Today’s family meeting mainly discussed Anita’s period at home over Christmas. The staff wanted her to be at home for a period of 2 weeks. They think it will do her good because she has been in hospital for such a long period. We voiced concern over her not having any physio over this period. The physio didn’t think it would affect her adversely although it was suggested that I carry out a predetermined programme with her. They think there will be lots of benefits such as increased motivation and an improvement in her psychological wellbeing. She will be home from 17th December. There will be carers from an agency in the morning and evenings, apart from Friday and Saturday evenings. It will give us the opportunity to test things at home.

We also talked about the recent prognosis that the doctor had given (she would see no functional improvements in her arm and leg). They gave me the impression that they agreed with me in that we would see improvements. I asked if she couldn’t have some kind of device for her leg that would mean she could walk but the physio thought not. A difficult problem at home will be that if she can’t walk then just how she is going to move around.

I also asked if it would do Anita any good to be in a different hospital. I have this feeling that there is always something more I can do for her that I am missing out on! Since her prognosis we wondered if the staff had given up. She was told this was not true and that she would not progress any better at another hospital. They see the approximate date for her discharge around March. Although we are desperate to move on from the hospital I remain to be convinced that she will continue her progress at the same rate with the services offered in the MK community. I will question the MK side of things much more to find out what they will do for her.

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.

Yesterday we hand another visit to Stoke Mandaville hospital for the consultant to take a look at Anita’s squint. Her right eye has turned inwards and it’s now a question of if they can do anything to straighten it. She has had squint surgery on that same eye long before she sustained the brain injury so the already weakened muscles must have succumbed again.

The consultant told us that any surgery to straighten the eye would be only for cosmetic reasons. It would not produce the improvements to her vision that I was hoping for. I guess all that has happened will have affected her sight. They decided they needed to be cautious about further surgery because the left and right muscles had already been operated on. Apparently they can operate on the up and down muscles which will still help move her eye straighter. The only problem is that an operation could damage further blood vessels. They need to get the information about her previous operation from the other hospital and measure the eye again in a few months to see if there are changes to the position.

One thing that amazes me is that if we hadn’t mentioned the previous op they would never have known about it. Having spent time around brain injured patients many are unable to remember things so it makes me wonder how vulnerable they are in these situations. Surely in this day and age there should be medical records that are instantly accessible so problems like these don’t happen! I have seen this happening time and time again in hospitals.

Today we watched the film Shawshank Redemption. Anita was a bit low so I thought it could give her a lift. I would recommend it to anyone in need of inspiration. It has some great spiritual message in the film particularly if like Anita you are trapped. The guy is trapped in prison for life yet inside you can see he is smiling, because he has faith. He doesn’t ever give up. Morgan Freeman says

“Hope is a good thing, maybe the best of things and no good thing ever dies.”

Apparently people of all persuasions get something from the film, particularly Christians. I find this a bit odd because the evil warder is very much a bible basher! For me the spiritual side of the film comes out when the guy says

“Here’s were it makes the most sense. You need it so you don’t forget. Forget that there are places in the world that aren’t made out of stone. That there’s a - there’s a - there’s something inside that’s yours, that they can’t touch.”

The last couple of days have seen a little more movement in Anita’s left arm. She is able to now put the brake on and off her wheelchair. She has done a lot of work on it recently. Is it down to those exercises or small changes in the brain? She was also able to touch her chin with her left finger for the first time. She is trying to bring the hand into use more and more.

This evening I attended a meeting with the Rehabilitation Doctor, the Physio and the OT. After 6 months in rehab the Doctor was probably at a stage that he could give some kind of prognosis. I had been asking a lot of questions about why certain goals were being set, if Anita was getting enough physio and if the plans were ambitious enough.

I have tried to get this down as accurately as I can remember. The main thing he had to say was that ‘Anita had suffered substantial nerve damage and that her neurological recovery had virtually stabilised’. ‘Without this significant neurological recovery we are not being realistic with respect to her walking again’. ‘In the majority of cases similar to Anita they would not walk again’. When asked to clarify if Anita ‘would never walk’ he reiterated that’s not what he was saying but at the moment there was a lack of realism in the attitude to recovery. He was concerned that Anita’s whole mindset and goals were focused on walking and this was to the detriment of other improvements she could make. She needed to be focused on other things and would be disappointed time and time again if she expected to walk.

I was not expecting to hear what was said. Anita had been telling me that she had recently walked on her own albeit with all the strapping and quadrapod gizmo’s. It therefore seemed odd to consider she would never again walk. I made this point but what she is doing is apparently a long way from walking!