Carolynne is a primary carer to her daughter, Freya, who has complex needs. For Dying Matters Awareness Week, Carolynne tells her #DyingMattersAtWork story…and how having a compassionate employer has made a huge difference on both of their lives.

“Every day is a trauma day for me”


It wasn’t always like this for Carolynne and Freya. When Freya was born, Carolynne was working as an on-site software engineer for an IT company. She returned to work after 11 months of maternity leave.

But things were soon to change, drastically.

Just a month or two after going back to work, Freya experienced a significant incident, and was put on life support. Although she made a recovery, both of their worlds changed immeasurably.

Carolynne, Freya and her sister
Freya’s first years were a rollercoaster

An understanding employer


Carolynne says that her manager was understanding, specifically telling her not to come in. They immediately gave her three months off with full pay; there was no requirement to even check in.

When she was ready to work again, Carolynne was offered a phased return, and her role was changed to give her a steady office environment with the IT support team, rather than her more hectic client-facing role.

A rollercoaster: Freya’s first years


A number of significant life support episodes happened in Freya’s first five years. But Carolynne’s work were supportive at every step, giving her as much time off as she needed, always on full pay, and she was never expected to get in touch. 

Carolynne recalls that she even ‘got into trouble’ with her managers when she tried going into work after Freya had been admitted into hospital.

Both HR and the wider organisation had a supreme understanding of her unique situation, and according to Carolynne, they never made her feel bad. The right support had very effectively been put into place for those that needed it.

Carolynne, Freya and her sister

"Work was so important to me, and the rest of the family…I wanted my children to know that I was working."

‘No choice but to give up work’


Eventually, Freya’s needs became more complex, which meant that Carolynne had to leave her job. This, she says, was really hard: “work was so important to me, and the rest of the family…I wanted my children to know that I was working.”

Unfortunately, leaving her job – and the welcome distraction that it offered from her situation at home – triggered mental health issues for Carolynne, who ‘plummeted’ into the depths of depression. At work, she could at least compartmentalise what was going on in her life. They had also arranged counselling and were “very, very empathetic towards my situation”. 

Now, that had all disappeared.

‘Everything I’d worked for was gone’


Carolynne found it extremely difficult to give up work, feeling like everything she’d worked for was gone. Even just her ability to be a mum to her other children was ‘limited’. 

She says she started feeling like she needed to get back to work.

Powered by a deep need to piece together her identity, broken by years of demanding caregiving, Carolynne started going to parliament groups and carer meetings, finding it cathartic to talk about her lived experience supporting Freya. 

She then got involved in the Carers (Scotland) Act 2016, and engaged with a number of research projects. This, she adds, helped her feel useful, giving her an opportunity to use her skills whilst boosting her confidence. 

Carolynne and Freya

“I was scared that I was going to end up being Freya's carer and that's it.”

A new start: PAMIS


During the Covid-19 pandemic, Carolynne started volunteering with PAMIS (Promoting a more inclusive society) – an organisation which supports people with profound and multiple learning disabilities, their families, carers and professionals. PAMIS provided Freya with postural care (an approach that aims to preserve and restore body shape and muscle tone for people with movement difficulties), and gave Carolynne the information about why it is so important to protect Freya’s body shape. 

Carolynne is now PAMIS’s Postural Care Education Lead.

Back in the workplace, Carolynne says that her new employers offer an enormously compassionate experience as an employee, with flexible time and ability to work from home when needed.

The many aspects of being compassionate


Carolynne says that there are many aspects of being a compassionate employer, over and above how much you pay your staff.

“It’s about understanding my needs and supporting me to continue to do what I’m doing in a really safe space”.

She adds, “there have been a few times when I’m on calls where I’ve broken down, and a compassionate employer has been there to support you when that happens.”

“Every day is a trauma day for me - nothing goes away, it's still there, it just takes something to trigger it.”

Carolynne and Freya at the theatre
PAMIS was a fresh start for Carolynne

Why being a compassionate employer matters


Carolynne’s work is hugely important to her – and the valuable opportunity it gives her to be more than ‘just a carer’.

Her experience shows that having a truly compassionate employer can make a huge difference to the lives of an employee and the person they are caring for. 

Research by Hospice UK has shown that every day, more than 600 people quit their jobs to look after older and disabled relatives.

Could your workplace benefit?

Could you and your colleagues benefit from dedicated wellbeing support for staff and employers? Then we can help. 

Get in touch with our wellbeing support programme to see how your organisation can be well set up to look after employees through grief, illness and caring.

About Dying Matters Awareness Week


We’ve shared Carolynne’s story as part of Dying Matters Awareness Week 2023, which focused on Dying Matters at work.

We spend so much of our lives at work – and we shouldn’t have to hide our experiences of death and dying from our colleagues, our peers, or our bosses. 

With your help, we can create open and compassionate society where we are comfortable facing the realities of dying, death and grief. 

Thank you to Carolynne for sharing her story.