By David Annand – Crossroads Care Surrey’s Corporate & Community Relationship Officer
I recently had the pleasure of meeting John. John, who is 69 years of age, cares for his wife Mandy, 61, in their own home whilst she is receiving end of life care support from Crossroads Care Surrey.
Whilst our care support worker was attending to Mandy, I asked John to tell me about their lives, about Mandy’s diagnosis, and how Crossroads Care Surrey support both Mandy and himself through the most difficult and challenging times anyone must face.
John is very open and willing to share their story with me.
John and Mandy officially became a couple in 1992 when John was 38 and Mandy 30. They’d both trained to be chartered accountants working in London. They married four years later in 1996 and have three daughters, all in their twenties. The youngest two children still live at home or are based at home with the eldest living locally nearby. It is clear that they have been and remain a great support to him as he cares for Mandy.
When I asked about his and Mandy’s main interests, John tells me that Mandy’s was literature. She was an avid reader and collector of books with a particular interest in children’s books. As I look around the living room I can see shelves of beautifully bound books that have been left undisturbed for quite some time. “There were many more” he said. For John himself, his hobbies are music and football, and by having support to look after Mandy, he has been able to remain a long standing season ticket holder of his team, Brighton & Hove Albion FC.
It was after their second child was born that Mandy decided to give up work and stay at home to raise their children. When the children were older and more independent, Mandy returned to work and became a classroom assistant and school administrator at a local primary school. From there she trained to be a teacher. It was around this time, in 2010, when Mandy was just 48 years old, that John first noticed that his wife was taking much longer than expected to complete her teaching assignments. John recalls “I knew something wasn’t quite right because I’d done the same training previously myself, sometime ago, and I wondered why it was taking her so long”.
It wasn’t long after this, when Mandy was being independently assessed during one of her classes to her students, that it was observed that whilst presenting the lesson she had delivered the beginning and ending but had entirely missed out the middle section. On further investigation it was then discovered that Mandy couldn’t in fact remember any of the names of the students she had been teaching. Sadly, at the age of 48, Mandy’s planned teaching career was over.
From this point on, investigations took place to try to discover the reasons for her cognitive failures. Initially, John says, they were told it wasn’t dementia but six years later, in 2016, Mandy was in fact finally diagnosed with Alzheimer’s at just 54 years of age. It wasn’t long after, that John had to retire in order to look after Mandy as she became less and less able to look after herself and began to show signs of aggressive behaviour most probably fuelled by frustration at her increasing limitations.
John has been based at home with Mandy ever since and is determined to keep her at home until the end of her life if he can. He tells me that he used the respite break services of a local care home to allow his daughters and himself to take a short break, and although Mandy was a popular resident, John said “a care home is not the same as being cared for at home”.
Before Crossroads Care Surrey entered their lives John hadn’t been on a proper long term holiday for many years and he was struggling to do the simple everyday things that we all take for granted. “Even getting a haircut and taking the dog for a walk were difficult to achieve” he said. He expressed feelings of being trapped and restricted by Mandy’s condition. Despite this he still considered himself lucky to have three daughters who he could call upon for support. As he tells me this, his daughter returns to the house having just taken their dog for a walk.
Crossroads Care Surrey began supporting John and Mandy in January 2020. Initially, at this point, Mandy was still mobile but had lost the power of speech. The support he was then receiving enabled him to do limited part time work mainly from home, something his friends saw made a noticeable difference to his outlook and personal well-being.
Of the support he is receiving, John said “Having the same two carers from Crossroads Care Surrey all the way through is so vital, not just for Mandy but for me and my family as well. Because they are familiar to Mandy and she recognises them, she is willing to accept their help and support”.
Whilst I chat to John, Jacqui, one of the two Crossroads Care Surrey carer support workers that visits, is feeding Mandy who is now bedridden. Feeding can take as long as an hour. During her visit, Jacqui washes Mandy and reads to her from her favourite books.
Between them, the two carer support workers visit four days a week for a period of 3.5 hours on each day.
When I asked John to describe the main benefits of the End of Life service Crossroads Care Surrey provides, he replied “One to one attention for Mandy and the security and trust between us all”.
If you are caring unpaid for someone and need our support please do reach out to us. We are here for those who care.
