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Moments shared


Patients, family and supporters share their experiences of our care and their support

 

Chris Toates

01 November 2014

Chris and Brian had known each other since 1968 and started dating in 1970. Brian took great pleasure in telling people they met as result of an advert. Not a dating advert I hasten to add but in fact as a result of Brian advertising for a vacancy within his company. They only worked together for a short period before Chris got poached by another part of the company but romance blossomed and in 1977 they married.

They chose not to have children but instead travelled together and enjoyed seeing the world. Their lives were committed to one another and their many holidays. Brian had lost his parents some time earlier but in late 2013, Chris sadly lost her mum and dad in short succession. It was shortly after this in May 2014, having had difficulty walking Brian was diagnosed with Motor Neurone Disease.

Brian was confident this was a mistake and that his illness could be fought, realisation struck and Brian told Chris ‘I want to die, you wouldn’t allow a dog to lie like this.’ Their family dog Candy had been unwell sometime before and looking at the sadness in her eyes, they decided they couldn’t allow her to suffer and took the brave and difficult decision to bring things to an end.’ Brian wished he could make the same arrangements and was desperate for Chris, his loving wife to get on with her own life. He felt he was becoming a burden and as the illness took greater hold his movement become more and more restricted.

Chris and Brian have both resided in the Cambridge area for some years and felt their meeting had been fate, a collection of circumstances brought them together and at this challenging time they knew they had the strength to get through this together. They had visited the hospice once before to visit a friend but did not initially think of the hospice as somewhere which could offer the care needed. Lorraine, a consultant from the hospice visited Brian and Chris in their home and talked through the services available at the hospice. Following this Kate, a member of the Specialist Palliative Care Team met with them both and continued to decide upon options and care programmes available.

Brian was reluctant to go to hospital, preferring to stay in his own home or if needed be cared for at the hospice and the staff planned for this. Brian did not fear death, he decided he did not wish to be resuscitated or helped with feeding as his health deteriorated and completed all the forms necessary. As time passed his health at home continued to deteriorate and whilst carers visited morning and night, Chris felt she couldn’t cope. Brian was becoming difficult to move and meeting his personal needs increasingly more challenging.

The occupational therapist would visit but his illness was taking hold so rapidly it was difficult to keep his care programme up to date. Brian felt a burden and started to refuse to drink and eat and on Thursday 17 July 2014 at 6am he was admitted to hospital. Whilst at the hospital they managed to stabilise his condition and work on the internal problems which Brian was now encountering. Brian was asked if he wanted a bed at the Arthur Rank Hospice and although we did not know what his length of stay would be, Brian accepted, he was admitted the following Tuesday 22nd July 2014.

His care programme was monitored regularly and the spasms in his legs were managed with medication and this became under control. Having addressed some of the complications of his condition, discussions took place to see if Brian could return home or whether a nursing home would be an alternative option. Cilla, the social worker helped support Brian and Chris through the process and viewing of the homes commenced. The therapy team also visited Chris and Brian’s home to see if arrangements to return home would be possible. The house was assessed and applications were submitted for funding to help with the cost of this.

It was at this time Chris bought her concerns about caring for Brian at home to the attention of one of the volunteers. The volunteer encouraged Chris to speak with consultant, Tabitha. Tabitha talked through Chris’s worries and assured Chris that they would continue to treat Brian on day by day basis as a continual assessment and alterations of the care programme were required as a result of Brian’s developing needs. Brian wasn’t religious, but spoke with Keith, Hospice Chaplain and Chris found Linda from the hospice chaplaincy service beneficial. They offered support and helped with some of the decisions which Brian needed to make and helped Chris to start to plan for the time ahead. We spent a lot of time together and this was a great help.

Brian enjoyed eating out and always enjoyed getting dressed up for the Cruise ship meals but now even his ability to eat and enjoy food had been taken from him. This was quickly followed by his breathing becoming strained and it was now proving difficult to communicate. Chris recalls Brian using his energy to ask ‘Why am I being left out? You’re choosing food for me, I want to choose.’ Sadly for Brian, the meals which were now safe to eat were becoming more limited but the nurses and healthcare assistants helped wherever possible. It was from this point medication was increased and Chris found Brian begin to slowly drift.

For Brian and I the hospice offered us a place of safety. The nursing levels are at an excellent level, the staff are brilliant and the doctors always accessible. I had piece of mind and I too, was being cared for. Brian was pleased I was being looked after, it was important for him to know I was eating, being cared for and one of the most important services for me was the transport. I had broken a small bone whilst lifting Brian at home which resulted in me hobbling about on walking sticks and prevented me from driving but Shelagh from the charity quickly arranged for a volunteer driver, often Alan, to pick me up. On a daily basis, I would visit from about 10.30am in the morning until 8pm in the evening. Brian was in the hospice for seven weeks and this gave us both much needed and precious time together without the stress of public transport.

Brian and I made new friends, befriended other patients and their families and came across old acquaintances. Everyone is made to feel so welcome and everyone, staff, volunteers, relatives and visitors alike have time to sit and chat. You would never be allowed that number of visitors elsewhere. Every person I spoke with was really positive. People would often say ‘I didn’t know it was like this.’ People kept saying ‘How brilliant it is here, how nothing is too much trouble.’ One gentleman who had just lost his mum said ‘I really do feel the staff here really care, they don’t just say it!’ and I got that feeling too. Brian and I would sit in the hospice gardens; he loved nature and was so content watching the birds. Patients and visitors alike enjoy sitting there, they are peaceful areas, but there is also a lovely buzz through the hospice which is really nice to hear too.   The hospice look after everyone, they were so many services I didn’t even know they offered. One therapist, Marion noticed my swollen feet and offered me a massage.

For Brian the nursing support meant Brian was kept comfortable and his needs were continually assessed, at home I couldn’t have coped. I found caring for Brian a worry, I rarely slept as he needed to be turned often and legs needed to be massaged and moved. It was such a weight off both of our minds. Brian passed away seven weeks after being admitted to the hospice, on Sunday 7th September 2014 and Brian’s funeral was held on the 25th September 2014. The hospice is not all about the end I met many people who were being cared for at the hospice some of which are now back at home enjoying life again for whatever time they have.    

 

 
 

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