Barts-MS rose-tinted-odometer = zero
I remember her so well. She was malnourished, bordering on anorexic. When I examined her she was literally skin and bone with abrasions over the bony protrusions, or spinous processes, on her back and an infected pressure sore on the heel of her right foot. She used to bum-hop down the stairs in her house and occasionally would slip and slide down the stairs, hence the carpet burns on her back Her husband had abandoned her and her 12-year-old son two years previously. Too proud to ask for help she had been struggling with an increasing disability; she was off her legs with bowel and bladder problems. She was depressed and in a bad way; she was simply not coping.
The tragedy is that her son had become her defacto carer and was responsible for doing the shopping, domestic chores and looking after her including bathing her and taking care of her intimate bodily needs. As a result of the burden of taking on the role as a primary carer he had become socially withdrawn and had no friends. Firstly, he had no time for play and, secondly, who want to bring home friends when his mother was in such an awful state. As a result of having to get his mother up in the morning, dressed and fed, he was often late for school and had had several warnings from the school. The tragedy is that when his mother failed to attend parents evenings and meetings with his teachers nobody bothered to ask the right questions. Nobody had noticed his social isolation and I suspect his demeanour.
All it took was one phone call from me to her GP, who arranged for a social worker to do an urgent home visit that same day. She was admitted to a local hospital the following day for rehabilitation and management of her pressure sore that required surgical intervention. Her sister came down from the midlands to look after her son and the rest is history. I don’t work at that hospital anymore, but I suspect this woman will either have very advanced MS or will by now have passed away from the complications of MS. Her son will by now, be in his late twenties. I sincerely hope he is okay and managed to reconnect to wider society and has many friends. Just maybe he has reconnected with his father.
This lady’s story is exceptional in that these dire social circumstances don’t happen very often. Saying this there is still an army of young carers in Britain looking after parents, grandparents or siblings with disabling neurological conditions, including many with MS. Young carers, are part of the underbelly of austerity Britain and the harsh consequences of our government’s massive cuts in social spending.
The article below covers the experiences of young people living in a family affected by a disabling neurological condition. In reality, the condition, in this case MS, shapes them, throws them into the deep end and creates an intense need for them to talk about things and highlights the obvious that they usually don’t understand what is going on. This is one of the reasons why Barts-MS created and runs Digesting Science; to teach children about the disease their mother or father has and to give them an environment to ask questions.
If you have young children between the ages of 6 and 12 you should ask your MS nurse if there is a Digesting Science course being run near you and you should take them along. Some of my patients tell me the experience for the family is transformational. Knowledge is empowering even if you are only 6 years old.
If you are a young carer and this post has affected you can get help from the Carers Trust.
Masterson-Algar & Williams. “Thrown Into the Deep End”: Mapping the Experiences of Young People Living in a Family Affected by a Neurological Condition. Qual Health Res. 2020 Jan 29:1049732319900498.
In this case study research, we investigated the impact that having a parent with a neurological condition can have on young adults’ experiences of growing up and the nature of their support networks. The work was informed by models of the interface of chronic conditions and the family. Stroke (n = 6), multiple sclerosis (n = 14), and dementia (n = 11) were selected as discrete cases. Within each case, the researcher (a) carried out semi-structured interviews with young adults (16-25 years) living in families affected by this condition and (b) organized a workshop in which all participants reviewed preliminary themes and reflected on their support networks. A thematic analysis identified four themes: the condition has shaped me, thrown into the deep end, I need to talk about this, and they don’t understand. A model of networks and support for these young adults was generated reflecting the need to increase their visibility and their access to support.