John and Brenda’s story
John was aged 70 and had been diagnosed with Mesothelioma four months prior to being referred to NeuroHealth by his solicitor.
His life expectancy was extremely short, but neither he, nor his wife, Brenda, wished to know this. He had been the main carer for Brenda, who had complex health conditions for many years, and was worried about who would care for her following his death and how she would manage.
One of NeuroHealth’s Case Managers visited John and Brenda to conduct an assessment. John was already having some difficulties caring for Brenda and completing tasks around the home. They were both reluctant to having external support initially, but soon realised that this could help provide a better quality of life, and make both of them more comfortable.
The Case Manager worked closely with the family and arranged the following:
Equipment such as a profiling bed and reclining chair, to assist with transfers, make John as comfortable as possible in his final months of life, and to make life easier for those caring for him.
Liaison with MacMillan, District and Hospice Nurses to ensure John’s needs would be met as his illness progressed.
A private package of care, starting slowly and increased gradually as needed, to ensure that John could remain at home (in accordance with his wishes) throughout the duration of his illness and until he passed away.
The care package also allowed for supporting Brenda in activities of daily living and community access, whilst John was unable to assist.
Towards the end of his life, a live-in Nurse was provided, to allow John to remain at home with suitable pain relief and nursing input.
Domestic assistance to maintain the home – a role formerly performed by John before becoming ill.
A support worker for the Brenda following John’s death, to provide personal and practical support at home, and assist with community access.
Mobility equipment for Brenda, to enable her to remain as independent and safe as possible following John’s death.
As a result of having a Case Manager, it was possible to ensure that John had a dignified, and comfortable end to his life as possible.
John, and his family were also able to make more choices, and had peace of mind that Brenda would be cared for and could remain in the family home following his death. Their Case Manager remains involved on a low-level basis to assist with managing the ongoing care package where required.
Prior to his accident in January 2005, Sam was a carefree 25 year old man who worked as a mechanic for a large company of tree surgeons. He loved working in his workshop at home, mainly on metal sculptures and ornaments. He loved vintage cars and motorbikes, had an active social life and was saving to buy his first house.
Sam was involved in a road traffic accident, when his motorbike collided with a car. He was initially conscious and suffered only cuts and bruises. However, in A&E he experienced disrupted blood flow to his brain, caused by trauma to his neck. This in turn caused a large stroke affecting the left side of his brain. Sam lost consciousness and underwent surgery to open his skull and relieve pressure on the brain. Following the surgery it was found that he had developed severe weakness in his right side. He was unable to speak (aphasia) and had difficulty understanding what was being said to him. His visual field on the left side was severely reduced, affecting his vision.
Sam remained in the acute hospital until June 2005 when he was transferred to a specialist neurological rehabilitation centre. He was discharged home to his parents house in September 2005. At this time Sam could walk slowly with a stick and complete the stairs in his home with a handrail. He was still unable to communicate verbally and had difficulty understanding anything other than basic speech. He was totally dependant on his parents to prepare food, accompany him out of the house and in all aspects of planning his life.
Due to the involvement of a personal injury lawyer and the release of funds to pay for rehabilitation, Sam was referred back into intensive rehabilitation at Banstead Neurorehabilitation Service (Queen Elizabeths) where he remained an inpatient from April 2009 until June 2010. I met Sam towards the end of his stay at Banstead. My role was to plan his discharge home to his own rental property where he could live independently with the help of support workers. By this time Sam could independently wash and dress himself, prepare very basic snacks and his mobility had improved so that he could walk outside safely. He still required round the clock assistance because of his inability to communicate verbally and his difficulty remembering new things, for example, the route to the shops, or what he needed to buy. He was unable to use his right arm to assist him in tasks, and the weakness in his right side meant that he got tired very quickly.
Initially Sam required 24 hour care to ensure his safety and to assist in all areas of daily living, such as food preparation, shopping, cleaning, navigating and managing his finances. I recruited a team of therapists, involving a speech and language therapist, a physiotherapist, an occupational therapist and a neuropsychologist. This team worked with Sam intensively for the first 12 months in his new home environment.
Over time Sam slowly became more independent. He was able to learn new routes to local places of importance for example, his physiotherapy clinic, and was able to start going out alone. He learnt new skills around the home allowing him some independence with cleaning and tidying. He learnt some basic money management skills and became independent in managing a small budget for personal items and food each month.he most significant and life changing improvements came in Sam’s ability to communicate. At the start Sam was unable to participate in conversations meaningfully because of his lack of understanding and inability to answer. He had become used to just agreeing with everything and was totally passive in all of the decisions being made. Over time, with training from the speech and language therapist, he learnt to use pen and paper to get his point across and developed a system of short words, noises and gestures to accompany his drawing which meant that he could communicate meaningfully. He was able to make choices and decisions about his care, therapy and life.
Now Sam has support five days a week for six hours, and one evening where the support worker sleeps over so they can go to the cinema or to the pub. Sam is able to go out alone to shop and is able to communicate briefly with people in shops and restaurants to get what he wants. He goes to college one day a week to a metal work course (with help from his support worker) so that he can develop his skills using one hand.Sam has been on holiday with a support worker to Turkey and is planning another trip next year. He has just bought his own property which is undergoing renovation, meaning that he will finally be a home owner; a big goal for him! He plans to convert the garage into a metal workshop.
His hopes for the future include finding a job or voluntary role that he can do one day a week, either in a blacksmiths or working with animals. He hopes to buy a dog to keep him company in his new house. He also wants to meet the right woman and get married. Given his huge achievements so far – all of this is possible! Case management has helped Sam to regain control over his life, to live independently, to achieve some of his life goals and to look forward to the future.