Unpaid carers and the fear of losing themselves

In 2021, Kate Garraway opened up her husband, Derek, being critically ill in hospital with COVID. Fast forward to 2022, Kate is back on the screen to give us an update on her caring duties and how Derek is getting on. Watch the ITV trailer here.

https://vimeo.com/676233148

On the 23rd of March 2021, 4.5 million people tuned into ITV to watch Kate Garraway open up about her husband Derek’s battle with long-COVID.

In Finding Derek, the tumultuous journey of a long-term chronic illness, for both the sufferer and their family, was laid bare for the whole nation to see- in all it’s painful detail. It’s safe to say that the British public was deeply affected and moved by the struggle of the much-loved presenter and her family.

Many people particularly honed in on Kate’s statement about how she may potentially have to give up her job to care for her husband full-time, as she said:

\”If he needs 24-hour care I will be the primary carer. I have a fear of the reality of that life… it is a completely different dynamic to our relationship.\”

This led her to clarify in an interview on Good Morning Britain that ‘she’s not going anywhere’ and that she more meant:

\”right, I’m going to have to change my future, as anyone who’s faced a long-term impacted illness is going to. And that’s going to mean altering my life\”.

Perhaps the attention on that particular statement was due to people worrying that Kate would be disappearing from their screens in the morning. However, Kate Garraway raises two very important and very sensitive concepts with both her initial statement and her response.

Unpaid carers and giving up work

Firstly, she draws attention to the fact that many carers are forced to give up their jobs and careers to care for their loved ones.

In fact, in a recent report commissioned by the CIPD and written by the University of Sheffield, it is said that:

\”almost half (44%) of working carers in England and Wales, equivalent to around 1.6 million people, are struggling to cope with the pressures of balancing their work and caring responsibilities – and that a quarter (24%) have considered giving up their job entirely.

Of those surveyed:

\”60% reported low mental well-being, and only 1 in 10 (11%) said combining paid employment with caring had no effect on their levels of stress and anxiety at work\”

The realities of being a carer

Then, more subtly, Kate Garraway highlights the harsh reality that carers often do not want to be carers in the first instance.

It goes without saying that no one wants their loved ones to become chronically ill.

However, when thinking about those who care for their family members, people often think of the picture of passive and loving duty- a symbol of enduring patience and unwaivable dedication to the one they love at the expense of themselves. It is often not thought that there could be any resentment or emotional struggle involved.

Due to the incredibly selfless nature of caring for someone else, we have a tendency to romanticize the act of caring for a loved one. We don’t discuss the uncomfortable and distressing parts.

However, this can do a disservice to carers.

We tend to gloss over the carers who are scared of losing their normal lives to caring for a loved one.

We tend to not discuss those carers who may not like the person that they care for. Indeed, forums are full of carers being emotionally and physically abused.

The idea of someone having a caring role thrust upon them unwillingly is distressing, so instead we focus on the rewards of caring and the heroic act itself.

However, if we don’t represent these struggles and don’t discuss the realities of caring, these people will remain unsupported.

Of course, caring can be the most rewarding act a person can do. It can bring people closer together and can be a largely positive experience for all involved.

It’s selfless, generous, and shows a real strength of character. Studies have even shown that:

‘caregivers can be highly burdened while maintaining adequate levels of well-being’.

However, this perhaps does not speak for everyone. There could be numerous factors that mean a carer would struggle in their role and be fearful of taking it on. It is also worth noting that these studies would only take into account self-identified carers, who would be more likely to receive support.

It is hard to be honest about the ‘fear’ that Kate Garraway mentioned, as carers often feel their problems pale in comparison to their loved one’s. Forums like Carers-UK are filled with people who are simultaneously terrified of what their future will look like and consumed with guilt over their reluctance to care for someone.

Carer support forums are lined with posts such as: 

‘I’ve just become a carer and I don’t want to be’

‘suddenly my whole life is non-existent’

‘I’m scared about having to give up my future to care for dad’

‘emotionally abused’. 

The fear of appearing or being selfish reigns supreme in these forums.

Thankfully, the comments are filled with kindness and reassurance that no one is ever obligated to care for anyone and that you are entitled to live your life as you choose.

The impact that caring for another person has on your identity

Sometimes caring can enrich your life and self-image. Particularly in young carers, it has been reported that caring can lead to young people ‘feeling a greater sense of purpose, or capacity to deal with challenges; the ability to empathise with others; stronger family relationships and developed helping skills’.

Our jobs can often be a huge part of our identity and how we see ourselves; your profession can be a great source of self-esteem.

It makes sense then, that unpaid caring is sometimes treated as an occupation with unpaid carers referring to it as a ‘job’ with ‘shifts’ in recent studies. This often leads to a fusion of the carer’s identity with caring and evidence does point to the fact that:

‘young carers often go on to adopt ‘caretaker’ roles as adults (which) supports the notion of their having ‘integrated’ caring into their identity’.

This can be either positive or negative- there is no one size fits all. However, if a carer is forced to give up work, it can feel like a loss of the self.

This loss of identity can make them feel invisible. It can erode at their self-esteem and leave them feeling adrift.

It is understandable to feel fear towards challenging an identity you may have spent years building for yourself.

However, even if a carer chooses not to give up their job, this fear does not necessarily go away. It is often replaced by fear of managing caring and working, the fear of neglecting someone who needs them, and the fear of being judged by others.

After all, by nature we grow to see ourselves in the way that others see us. So if we fear that people will think we’re selfish, that directly leads to a fear of actually being selfish. This is why this side of caring is under-represented and under-supported.

It feels taboo and self-serving. However, it is important to remember that your emotions are valid and serve a purpose. It’s important to listen to yourself and live the life that you want.

Help is out there.

This is by no means to paint caring for a loved one as a horrible job that no one wants to do. As said previously, it can be the total opposite. 

However, the harsh reality is that some people feel trapped. Some people are frightened and feel as though they have to give up their lives.

The fear of seeming selfish or having to give up work may stop them from speaking out and getting support. This support would help them to ensure that the chronically ill individual was cared for and that they would be able to live the life that made them happy.

Caring for a loved one doesn’t have to be scary or upsetting and a resolution that suits everyone is possible.

Here are some organisations that can help you.

3 thoughts on “Unpaid carers and the fear of losing themselves”

  1. I agree with all of the above. I am a 67 year old woman supporting my 89 year old mother from a distance of 150 miles. Her situation means that I visit her for 3 days regularly. This has been once a week until recently but, for my own well being I have cut it back to once every two or three weeks. She needs support but won’t accept it from anyone else. She has a cleaner once a fortnight although I would prefer once a week. She is deemed capable although she has increasing short term memory issues. She drives although I don’t think she should. Despite discussions with her doctor she won’t come and live with me and my husband. I have learned not to feel guilty and know that I am doing everything I can to keep her safe, well and hygienic. She isn’t the same person she was but she is still my mother. The situation mainly impacts on me financially as my husband and I are self employed and coupled with the pandemic are struggling with juggling increased costs of fuel and electricity. Goodness knows how we manage but we just get on with it. Hopefully when the inevitable happens we will still have enough energy to live whatever time we have left with pleasure.

  2. We moved my mum in law up north almost a year ago. We bought a property for us all thinking it was better to do it now before she deteriorated too much. We are currently waiting for a formal diagnosis but have suspected dementia for quite a while. I have recently taken the step to go back to work part time as my mum in law is generally ok at home tho does forget to eat properly and will spend all day sitting doing puzzles unless I leave her notes asking her to prepare veggies for our evening meal. Everything needs prompting and reminding several times. It is sad when only a few years ago she could think for herself and do normal household tasks. It was a relief to read parts of the article where the writer talks of people not wanting the role of carer. I have read dozens of posts from people talking of their “loved ones” but not many from people caring for someone they don’t particularly like or get on with. The feeling of shame can be very strong as you often can’t relate to others but daren’t actually share your true feelings for fear of sounding cruel or hard hearted. A difficult journey and we’re only just beginning!!

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