This is Carers’ Week : an annual campaign to raise awareness of caring, highlight the challenges that unpaid Carers face and to recognise the contribution that they make to families and communities. A Carer is defined as someone who provides unpaid care and support to a family member or friend who has a disability, illness or needs extra hep as they get older, so it excludes volunteers and those who are paid to provide support. I tend to think of myself as a parent, rather than a carer, but perhaps it is more accurate to think of myself as a parent/carer as certainly the care I provide for Joshua, goes beyond what most parents are expected to do.
When we decided to start a family, it never even crossed my mind that there might be an issue with our new baby, so it was not something that I was prepared for at all. So those early years of Joshua’s life were a massive learning curve, a big period of adjustment and required us to change our expectations of parenting. Most children require a lot of care and support when they are newborn, but they gradually gain more independence until at around18 years of age, you could expect them to flee the nest and only return for the occasional weekend with dirty washing and needing a Sunday roast. But it soon became clear that Joshua would always need our care and support in order to live a normal life. That is a daunting prospect when you consider it; I know that parenting is a lifelong commitment, but most offspring do not need such a hands on level of care for all of their lives. Even Mum, who was my role model in terms of being a patient, dedicated Carer to my Dad, who lived with her with vascular dementia for 8 years, even she had almost 50 years of marriage with an active, intelligent, equal partner before he required her care. She described her role as Dad’s Carer as being a ‘privilege’ at his funeral, and I was really struck, and moved by, her choice of word.
So throughout the country there are unpaid Carers who are caring for family members, 24/7 with very little support or recognition for the vital work that they do. Unpaid Carers cannot go on strike to complain about their long hours or poor working conditions, they have no employer to appeal to, to ask for some holiday. Now that I am not working, I have been able to claim Carers Allowance, because I care for Joshua for at least 35 hours a week. I am grateful for this benefit but it amounts to £69.70 per week; if I only cared for 35 hours per week, that would be less than £2 per hour! But the reality is that, if you take out the 18 hours that Joshua is at daycare, when he is someone else’s responsibility, that leaves me caring for him for 150 hours per week, meaning that in reality, Carer’s Allowance amounts to 46 pence per hour. So how can that make Carers feel valued or the work that we do feel as though it is appreciated?
If unpaid Carers were unable or unwilling to look after their family members, then the Social Care system would have to take the case on and we all know how expensive Care Home fees are and how there is a crisis in terms of finding staff for the poorly paid care work too. For this reason, supporting family members as unpaid Carers in their own homes represents a much more cost effective system for the Government and as such, these Carers need to be recognised and be better supported, so that they continue to provide the vital work that they do, behind closed doors.
I have no intention of stopping providing care for Joshua as we all grow older but that decision may be taken out of my hands, by my own ill health in the future for instance. I need to try to stay healthy for Joshua’s sake, but that is not totally under my control. In the future if I were to suffer from a stroke for instance, and lose my abilities, we would both be in crisis. That is part of the reason why professional respite is made available, so that Joshua is familiar with more institutional care, should we be unable to keep him at home in the future. But he has not attended respite since February 2020, as his usual provision does not have sufficient staff to be able to offer it. He is being assessed by an alternative provider in the next couple of weeks – if they turn up this time – as we recognise how important this missing service is to our family, now and for the future.
So during Carers Week, spare a thought for those carers who are living in your community : those daughters who are trying to take care of their elderly mothers living at home with dementia while juggling their own family and a full time job, those parents who have disabled children at home to take care of as well as meeting the needs of their other children and those siblings who have taken on the care of their brother since their parents passed away. There will be so many stories of Carers on your doorstep, but they tend to be invisible in society, as they tend to be quietly struggling to cope and do their best behind closed doors. They will not like to complain about how exhausted they are, as these are their family and so they just have to cope. Spare them a thought this week….