Care is a four-letter word

Recognising both the blessing and curse of being an unpaid carer, enei Content Editor Heidi Schwartz wonders if it’s possible for managers—or anyone, for that matter—to relate to this challenge unless they've gone through the experience themselves.

Lapel pin incorporates blue forget-me-not flower with Dementia Friend logo.
Lapel pin incorporates blue forget-me-not flower with Dementia Friend logo.
Photo by Heidi Schwartz.

Everyone cares, right? 

At some point, most people take on caring responsibilities of one kind or another. It might happen informally with an offer to a family member, friend, neighbour, or even a casual acquaintance who just needs some assistance. A simple decent act like this can feel pretty rewarding. As time marches on, additional long-term caring commitments may develop through deeper relationships with family members or friends in times of poor health or economic hardship—especially when both situations come with age. 

Helping someone during difficult circumstances may seem like an unselfish act of kindness (although sometimes this act may not be entirely voluntary), but even the kindest person may not be fully prepared for what it’s like to be a long-term, unpaid carer. Being an empathic person can also be a fairly demanding job—and a full-time one, too. In an unsupportive—or even simply an apathetic—workplace, carers may feel overwhelmed and isolated. 

Not a business matter 

Historically, the business world was not particularly proactive in terms of promoting work-life balance. If anything, work could sneak into an employee’s personal life in the form of after hours telephone calls, travel requirements, or meeting commitments—but it would generally be frowned upon if personal matters didn’t take place in the employee’s own time. For unpaid carers, scheduling conveniences or conflicts were not even a consideration.  

Fortunately, times have changed. Many modern workplaces support the idea that paid work and personal life should be seen less as competing priorities and more as complementary elements of a full life. For more information, see enei’s Quick Guide: Work-Life Balance

Why should employers care about carers? 

Since the beginning of the COVID-19 pandemic in early 2020, the number of unpaid carers in the UK has increased significantly. That means, more than ever, people in the workplace may be providing unpaid support to family members or friends. This can often have an impact on their emotional wellbeing. 

Nothing prepared me for the downward spiral that came when dementia took over the life of someone important to me. Nor did I anticipate what it would be like to try and manage it against the backdrop of my work environment. Some stress came from my own self-imposed and competing sense of responsibilities, but acknowledging this didn’t make the situation any easier. 

Heidi Schwartz, enei content editor 

An employee may see the workplace as a normal, stable environment—almost as a refuge from the sometimes thankless and often unpredictable demands of being an unpaid carer—but this type of escape is not necessarily healthy (or even sustainable, in a practical sense). Employers can benefit by offering proactive and compassionate support to employees who are carers. For suggestions, see enei’s Employer Guide: Employing and Supporting Carers in the Workplace

What’s it like to be a carer? 

As it turns out, being an unpaid carer was tougher than I thought it would be. Before the COVID pandemic, my elderly family member (who I live with) was diagnosed with dementia. I had just changed jobs and was working from home even before lockdown, so I could be on hand to make sure the person I cared about would be safe and comfortable. Everything was pretty manageable at that point, aside from the occasional unexpected disruptions at night. 

And then lockdown happened. With that came safety concerns that arose from the impossible task of explaining why a strong-willed, 90-year-old non-English speaker with dementia couldn’t come and go as they wished. Wandering meant the front door had to be locked; then dangerous cooking accidents meant the kitchen door had to be locked. A few falls in the garden meant the back door eventually had to be locked too. 

As lockdown dragged on, the world became more restricted and confusing. My family member had to be watched more closely. My employer had to deal with my unpredictable schedule. I did my best to participate in every online meeting, but disruptions in the background might occur, and there was nothing I could do about it but go and try to calm the situation. There were times when I failed in both instances. 

I thought I was prepared for the situation and approached it rationally. I already knew what it was like to be a carer, having both taken care of my newborn child and his seriously ill father while balancing my full-time career. One time while I was away on a business trip, I had to rush home to care for my young toddler whose dad was suddenly taken to intensive care due to his heart condition. My son learned to walk in the hospital while I found out his dad needed a heart transplant. That adrenaline rush of parenting tested me, but we all survived and thrived. 

I also had experience with dementia patients, having worked for a charitable organisation that dealt with dementia clientele. I even had my Dementia Friend lapel pin! That proved something, didn’t it? Well, no it didn’t. I quickly learned that being a “friend” wasn’t quite the same thing as being a full-time, unpaid carer. 

I was not ready for what it would be like to witness the downward spiral of dementia gradually taking over the life of someone important to me. I did not expect the unkind, relentless, and thankless aspects of what it’s like to care for someone in a way they should be cared for (and in the way I might hope to be cared for—if or when that time comes). Nor did I anticipate what it would be like to manage it against the backdrop of my work environment.  

Eventually, my family member moved to a safer environment in a care home. During most visits, my name and face are still remembered quickly. Sharing memories that bring positive recognition and smiles has been a pleasant surprise.  

Changing jobs has also reduced some of my professional guilt and anxiety, now that I work in an organisation with managers who do everything they can to understand and support employees through the challenges they face. Some of the stress in my previous job probably came from my own sense of self-imposed and competing responsibilities (for instance, I felt guilty for missing a work obligation after my family member’s serious fall in the garden resulted in an unschedule trip to A&E). I admit that this guilt was my own baggage (my manager at the time didn’t reprimand me), but it didn’t make the situation any easier.  

For some unpaid carers, pending legislation may help to improve matters slightly in this regard. I suspect more support will be needed. 

Making life easier for carers 

Under equality and discrimination laws in the UK, employers are prevented from discriminating against employees who are unpaid carers because of their association with a disabled person. On 25 May 2023, three government backed bills announced additional workplace protections covering leave entitlements and redundancy rules for parents and carers. The bills received royal assent on 24 May 2023 and will be enacted some time in 2024. 

Once in place, The Carer’s Leave Act, introduced by Wendy Chamberlain MP, will give unpaid carers a new entitlement “…for a week of flexible unpaid leave a year, for employees who are caring for a dependant with a long-term care need. This will enable carers to better balance their caring and work responsibilities, supporting them to remain in employment.” 

Will this make things easier for employers and employees who are unpaid carers to achieve a less stressful work-life balance? Only time will tell.  For now, many people will continue to provide unpaid care to those who need it for the sake of another four-letter word—love.

This blog post was written by Heidi Schwartz, enei content editor. It was originally posted on 1 June 2023.  

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