empowering the severely brain injured and their families via support, understanding and a network of care
Charles’s Story by Sue
Charles was a vibrant, honourable, hard working and energetic 57 year old who had been running his own fish wholesale business for over 30 years. He was well loved by his family and friends and highly respected by his business associates.
Charles was a warm, sensitive and generous man and it was his team spirited nature which led him to cycle for the British Heart Foundation charity every June.
It was June 2007, on that very charity ride, when he fell and hit his head. Charles was rushed to hospital in Brighton and then later transferred to a London hospital’s high dependency unit.
During the weeks that followed he suffered a massive brain bleed which devastated and immobilised his body. Surgeons removed part of his skull to allow his brain to swell but there was no guarantee that Charles would live through the night – he survived the surgery. Unfortunately, during his stay at this hospital Charles suffered with MRSA, collapsed lungs, various infections and lost over 4 stone in weight.
Three traumatic months later Charles was transferred to our local hospital where his new doctor bluntly explained that Charles would never walk, talk, eat or drink again. He might possibly communicate by some means or other one day. He would be peg fed for the rest of his life and it was also likely that his tracheostomy tube would never be removed from his throat. He would be hospitalised for the rest of his life.
It was heartbreaking to hear that Charles would be placed into a nursing home with no hope for the future. I promised Charles, at that point, that I would get him home – we would spend the rest of our lives together and I would work towards getting all the help he needed to improve this devastating bleak outlook. Life without Charles at home was not an option.
The next step was to find Charles some form of slow stream brain rehabilitation and we were supported and advised by a wonderful support contact, Helen from Head First. Helen suggested that The Royal Hospital for Neuro-disability, in Putney, would be the ideal place for Charles. Charles’ neurologist at our local hospital confirmed this was a good idea giving us renewed hope and assisted us in approaching this move.
We now needed to plead his case to our local Primary Care Trust (PCT). It was an “on call” ward doctor who informed us by telephone (out of the blue!) that Charles had no potential for rehabilitation and that there were plans being reviewed to move Charles into a nursing home. No way – our family stood strong and refused to let this happen and Charles was eventually moved to the Devonshire Ward at RHN.
It was from this point, December 2007, that Charles’ life became more bearable and comfortable as the staff and carers were well able to accommodate severely brain injured and disabled patients. For the first time in over six months Charles was sleeping peacefully and in comfort (having been showered for the first time since his accident in June!)
At Putney Charles was assessed and life changing decisions taken regarding speech and language therapy and physio therapy. There seemed some hope that he would progress and receive the help he so desperately needed. However, during this time we had to endure the 12 week PCT funding process – no family should have to cope with this when under such stress. How on earth does any brain injured patient recover in 12 weeks?!
We continued with hope in our hearts as Charles had his titanium plate fitted, his tracheostomy tube removed, his stoma stitched closed, he tasted his first yogurt and spoke his first words (even though infrequent).
He had started to communicate with thumbs up for “yes” and thumbs down for “no” – our Charles was fighting back and he wasn’t giving up! He was beginning to emerge from a minimally conscious state.
It was still a living nightmare because Charles was constantly suffering from chest infections and aspirating where he would be transferred to nearby hospitals for emergency care. The local hospitals had revolting medical wards (or holding areas) without appropriate equipment but through it all Charles struggled on making small improvements all the time.
It was obvious that Charles would never work again and we needed to ensure we protected his finances as these would be essential for his future security at home.
I had stopped working full time and worked as many part time hours as I could in between daily hospital visits. I planned to stay at home and care for Charles once everything came together. Our finances were a huge worry because if I could not hold everything together Charles would go into a nursing home.
I applied to the Court of Protection to become Charles’ deputy which allowed me to make decisions on his behalf. This in itself was upsetting having to complete reams of documents. However, once the deputyship was approved I was able to move forward with decisions assisting Charles’ eventual homecoming.
As I mentioned, nothing runs smoothly but we eventually managed to sell Charles’ business. This process was beset with delays and problems due to the financial crisis and red tape but at least we were moving forward to ensure Charles could go home.
Before Charles’ accident we were renting a small house, prior to moving to our farm house in France where we had planned to retire to. Now I needed to find us a new home in the U.K . Moving house is not fun in normal times let alone when under stress. Having found a property and moved in it was then flooded out by the upstairs flat! How long would all this take and when would it be ready for Charles to come home?
Thank God, Charles’ arrived home on the 6th July 2009 – to a newly adapted garden flat, equipped with a profiling bed and air mattress, shower trolley, hoist, oxygen, suction machine etc. Adapting and repairing the flooded flat was not an easy task but his wonderful friends came to the rescue and the project was well managed by a dear friend Chris.
It isn’t easy caring for Charles at home but the care agency is superb – Rainbow Medical Services have provided carers who have become part of our family and we cannot praise them highly enough. I am now trying my best to co-ordinate care at home. We have District Nurses who will visit on request, our local GP who is aware of Charles’ emergency needs and a pharmacy who deliver gallons of medications.
I administer Charles’ medications , via his peg tube, five times a day and am feeding him orally once a day with pureed food, high protein deserts and pro-biotic yogurts. It’s exhausting but so wonderful to have Charles at home as I am able to hug him and tell him how much we love him any time of day or night.
As for long term SLT and physiotherapy, the community services are so poorly funded – Charles desperately needs assistance now. We felt out on a limb at home with the rehab services offered and decided to enrol the services of some private therapists who are now helping Charles – this was made possible following a fundraising evening organised by Sarah and Bridget at Simson’s Fisheries. Vicky, from Heads Up , and Inge visit nearly every week and we are delighted with recent results.
I have had moments of deep despair and loneliness, moments of negativity, moments of fear and doubt but through everything Charles has survived the horrifying traumas and still has a hug for me. The least I can do is stay strong and help him “come back” to us. Charles is a very determined man and I have gained my strength from him. He is home now but we are a long way from where he could be. God willing Charles will continue to improve and the NHS will provide us with more assistance.
Charles and I had wonderful future plans to retire to our farm house in France and were looking forward to our life together in beautiful St Puy. My dream is that Charles and I will visit La Salette on a regular basis (once we have the funds to renovate and adapt it for disabled use.) We will be delighted to open our farm house to other disabled families. There they will be able to enjoy the beautiful location, the peace and tranquillity and to reflect on how precious each day is.
Thanks to our family (Richard and Mike especially) and close friends we have received amazing moral support – without this support life would have been totally unbearable. One thing I will say is, don’t give up no matter what, keep pushing the “system” or you will get pushed out of it.
Listen to your heart and keep a watchful eye on your loved one and monitor any changes. Every brain injury is different but you are the best person to note these changes. Ensure you have knowledge of medications, pct deadlines and don’t let your loved one down, you are now their voice and you need to be heard.
Gladys Knight sings “I’d rather live in his world than live without him in mine.”
I will never give up on Charles my adored husband.Next