Peer Group Volunteer, Wilson Paterson, shares his personal experience of brain injury with us, in his own words:

 

Headway and Me - My Personal Experience of Brain Injury

 

About seven years ago my wife, Viv, then 51, started to suffer from a number of medical issues, which had reduced her physical capabilities.  She was sleeping for longer periods and beginning to struggle with everyday tasks. I struggled to understand what was happening and to some extent focussed on work to avoid having to address what was happening. I had a demanding job in the Civil Service, based an hour away in Peterborough.

 

 In March 2013 she collapsed early one morning, which led to an emergency admission to NGH, with a subsequent transfer to JRH, Oxford, where she underwent emergency surgery to replace a blocked shunt, inserted as a child to drain excess fluid from her cranial cavity. The operation was a success, but Viv’s surgeon warned us to expect a restoration of 60 to 70% capacity at best. The blockage had caused a bleed in the cranial cavity and damage.

 

Viv was discharged at the end of March, and our lives returned to normal, with a holiday in Italy that June. Over the summer Viv did make a visit to Headway but did not feel as if it was right for her. She too was having difficulty in coming to terms with the effects. We managed to continue with our lives, Viv at home now, with no prospect of returning to work. Over the summer her condition deteriorated slowly, and this process continued for some time.

 

Viv revisited Headway and decided to attend, initially for two afternoons a week. I continued my job, taking on some very demanding training for a difficult new role, which in hindsight was not a good idea.

Viv’s mobility was restricted, but she was still able to walk. Headway was invaluable as it gave her an opportunity to mix with other people and undertake activities which she enjoyed.

 

We had another appointment at JRH, with Mr Griffiths, her surgeon. After scans etc., we had a discussion with him, where he gave us his view on what had happened to Viv.  His theory was that the shunt fitted in her early childhood had rained too much fluid, which had led to a significant bleed on the brain. This had scarred and resolved into extensive calcified bodies. His view was that this should have left her very significantly disabled, but in evidence of the plasticity of the brain, particularly in early childhood, her brain had rewired itself to allow her to survive and indeed thrive. This process had continued throughout her life, but in her early fifties the brain had begun to run out of resource for the rewiring and systems began to fail, leading to a consequent gradual increase in disability. There is no treatment that he would have countenanced, but he did give Viv the option to have the calcifications removed, at enormous risk of outcome. Viv and I discussed this option in private and decided against it.

 

We returned home to our normal lives, the new normal. We both struggled with this. There was a number of issues which began to arise, such as incontinence, which we both found difficult to deal with.  My line manager at work advised me to seek support from our internal support service, which saw me referred to a psychotherapist. I am still seeing her.

 

Over time Viv’s condition deteriorated to such an extent that she no longer had the use of her legs. She was admitted to hospital, at NGH, to establish the cause, which included an exploratory operation to see if the new shunt was blocked. The operation, from the surgical point of view, was a success, as the shunt was functioning. I met one of the surgical team in the café at JRH, and he must have been puzzled by my disappointed reaction, but a blockage and subsequent repair of the shunt was the only glimmer of hope, otherwise this was a permanent and significant deterioration of Viv’s condition, with no hope of amelioration.

 

At the time of the deterioration Viv ceased to attend Headway, as her level of disability was now too extensive for the team to cope with. However, Viv had increased her attendance to four afternoons a week, and thoroughly enjoyed her visits. I appreciated the great work Headway had done in providing Viv with social interaction and stimulation beyond what I could provide. I occasionally picked her up, especially after work on a Friday afternoon, when I would wait for her to finish her game of Scrabble and join in myself.

 

Viv returned to NGH and thence to Isebrook, for rehabilitation. Sadly, despite the best efforts of the physiotherapists, Viv’s brain had no capacity to absorb the knowledge that physio imparts to muscles, tendons nerves and the brain. We were advised that Viv would require extensive nursing and physical care. We considered the option of her returning home, but the house was not in a fit state to accommodate a severely disabled person, and I wasn’t either. This may shock some, and I will talk about guilt. But I realised that the cost in monetary and health terms of home care were too high, with both of us probably facing a very isolated existence. I had by now taken early retirement from work after a three month spell of sick leave, due to stress. I was lucky; as well as a very supportive employer – I represented a valuable asset and my managers genuinely cared about me - I was very fit. My psychotherapist commented that this helped me cope enormously.

 

I had a very difficult series of discussion with Viv. I can’t stress how hard this was, but we agreed that a nursing home was the best solution. I could relinquish my role as a carer and return to being as much of a husband as possible. We found a suitable home, and I want to record my gratitude to Jean Tudor, who accompanied me on two visits and provided invaluable advice on the best option for Viv. Viv made a couple of visits to the home and decided that it was suitable and moved in in late June 2017.

 

Our lives are now much better. Viv receives all the physical care she needs, good medical care and is with other people. I visit daily and have time to enjoy the rest of my life and have something to share with Viv. Home care would have had me frightened to go out, worried about what I might find when I got back home.

 

The staff at the home are excellent, and I am part of Viv’s community there. They look after me as well. As I said to one of my friends recently,  ‘life is bad, but it’s wonderful’.

 

I used to dread coming home from work, from athletics training, frightened of what I might find. Every day was tightly timetabled, all of which piled up low level persistent stress. I did find a care business who provided some physical care for Viv, and invaluable support for me. But the underlying stress remained.

 

My line manager agreed that I could relocate to our Northampton office, while Viv was in NGH. My colleagues were very supportive, and I can’t say how grateful I am to my friends and family.

 

My overwhelming reaction to the whole matter is fear and guilt.  I had no idea what to do; I found it hard to ask for help; the uncertainty made me dread coming home; and I felt guilt for not doing enough. Guilt is the prevailing feeling, in my experience, stemming from inadequacy in dealing with the early years of Viv’s condition, and from perceiving myself as selfish for having a life away from Viv’s bedside in the home. But I have a support network, friends, family, psychotherapist and the home staff, who all remind me that I am better for Viv if I look after myself. 

 

Guilt remains; I feel guilty every time I leave Viv after a visit, especially in the evening. I feel guilty when I go on holiday.  However, for me to be a good spouse in the circumstances, I need to have things to tell Viv, I need to have a life of my own. I live with the guilt. I am looking after myself. If I am not there through illness, who will Viv have?

 

I end with a question, because there are no answers that solve everything. I do my best. I recognise my limitations. We are surviving.

 

Wilson Paterson

19/09/18

 

 

 

 

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Our best Christmas coffee morning yet! 

 

Huge thanks to ALL who supported our Christmas coffee morning on Thursday 29th November - it was wonderful to welcome so many faces!

 

We all enjoyed some delicious home-baked treats, hot drinks and the prizes in our raffle were extra special too with branded bodycare sets, wine and festive hampers.

 

We have raised around £400 and are still counting! Thank you so much to all who attended and supported. 

Wilson Paterson and Tim Samples become Board Trustees!

 

 

We are delighted and proud to welcome volunteer Wilson Paterson and client Tim Samples onto the Board of Trustees! 

 

Working together to lead our weekly Peer Support Group, and both having direct experience of acquired brain injury, we feel they are excellent representatives for client, volunteer and family voices here at HEN and are very pleased to have them on board!

 

 

Headway Music Group rock the charity fundraiser!

 

An amazing night was had by all at the fundraising concert on Saturday 6th October, featuring facilitator Freyja, deputy manager Jonny, and the Headway Music Group, raising an incredible £405 EACH for both Headway East Northants and the Cransley Hospice!

 

The guys all performed  with others to raise funds for both Headway East Northants and the Cransley Hospice and the night was incredibly well-supported, with the venue packed to the rafters! 

 

Well done to all involved, particularly to Freyja and partner Chris, who worked so hard to create such a professional gig, and of course, our amazing Headway clients for conquering their nerves and performing two songs LIVE!