Thrown into the deep end

T

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 As a result of the burden of taking on the role as a primary carer he had become socially withdrawn and had no friends.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.

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

14 comments

  • We get sucked into the claims that MS only clips 6-7 years off the expected lifespan. I’ve never really believed this. My aunt died of MS in her late 40s, Theresa May’s mother died in her early 50s and J K Rowling’s mother Died in her mid40s. My GP told me last year that she visits a care home in my area where there are three women either in their mid 30s or early 40s. I have no doubt that DMTs over the last 25 years have had some impact, but late stage MS is pretty much inevitable for all of us with the disease.

    The lady described above has been let down by the doctors who cover her disease. Neuros don’t like getting their hands dirty so following the diagnosis and prescribing a DMT, these cases are palmed off to an MS nurse or the GP. The impact of austerity is flagged up on this site often, but no amount of government money would have given this lady her life back or a future. Until the experts and researchers can get to the bottom of this disease and come up with treatments which stop the damage in it’s tracks, we will see such cases continue. MS destroys so much more than a person’s health and impacts on the whole family. Until treatments can stop the disease there will be many more young carers who have to face these terrible situations.

    • This is heartbreaking I pray that her and her son manage to rebuild even a small part of there lives, this is just so hard to comprehend, 😇❤️

  • ‘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.’

    Could someone produce a handout/pack that can be given to parents at the time of diagnosis giving details of anything that could help the younger family members learn and manage, for example details of Digesting Science and charities such as Young Carers? I am sure there must be lots of useful information that could be compiled. Being given no information and told not to Google it isn’t helpful at such a difficult time and can lead to unecessary misinformation and worry.

    • The MS Society have written a guide for young carers. They also provide grants to young carers, for leisure activities such as music lessons and personal development.

      • Perhaps Neurologists and MS nurses could give a copy of this MS Society young carers guide, to a parent recently diagnosed with MS.
        Maybe they do this already.

      • This is good information and needs to be given to newly diagnosed families at the time of diagnosis to help them prepare and manage the situation they find themselves in. MS nurses are best placed to provide it at the beginning.

  • “This lady’s story is exceptional and they don’t happen very often”

    Sadly, this statement is completely false. This should be a reality check for the MS research world.

    Neurologists are not the primary healthcare givers for advanced or end-stage MS. Internists, hospitalists and mainly GPs do this. During my career, I have sadly taken care of many of these types of patients and neurologists had no role in their care because they unfortunately had nothing to offer in terms of treatment.

    The focus on relapses and gadolinium MRI changes, instead of halting progression and restoration, for the last few decades for continued astronomical profits has cost people their lives. This trend continues to do so with no urgency at hand with the continued approval of non innovative, recycled or slightly altered drugs from other fields.

    It is no wonder why MS patients have turned to alternative, complementary or anecdotal treatments. This website, I believe, was created to dispel myths like CCSVI and provide insight into the MS research world. In reality, very little has been accomplished in the MS research world since this website’s inception in 2009. There is no cause of MS found. There is no neuro-protection, no remyelination and no neuro-restoration products even close to being on the market.

    Science some will say is slow but this is a fallacy created Pharma for continued massive profits for drugs that, at best, will slightly slow one’s decline but to the same miserable endpoint unless you somehow get immediate treatment before any damage has been done.

  • This is an important topic and a great resource. Many years ago as a teenager I too was “thrown into the deep end” as the eldest of a mum w ms, missing school to go to the bank, food shop, and also became de facto mum to my younger brother. The impact on children cannot be underestimated. Even today while one hopes impact of children with ms will not be near what it was 30 years ago support is still vitally important.

  • MS Society young carers in Fife, have ten annual cinema passes, for a young carer to go use with a friend or relative, for respite.

    This type of support seems beneficial.

By Prof G

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