Case study: the journey from caring to bereavement

I remember trying to juggle everything. To go into work, do stuff for my mum and support my dad. I knew I didn't have the capacity, but I also felt like I didn't have any choice. My line manager who was brilliant at the time said, look just do what you can. But I remember thinking how long does this go on for? Are they going to pay me? It was all a bit vague to be honest.

I would go into work in the morning as normal, then work to a late lunch and then go home for lunch and not go back into work, and continue doing stuff at home. My mum had cancer for three years before she died. Her health really went up and down quite a lot. I don’t think I’d ever really realised that when people have cancer that their health can go up and down quite a lot.

When she was really ill and in hospital I’d be getting up, going to work, going home in the evening, going straight to hospital to see her not getting back till quite late. I was just exhausted all the time basically.

Then after about a year, I got a new job.

There was a lot less flexibility in the new role. You couldn't really work from home and you couldn't leave early. The job used a lot of brainpower and it was really hard to do that when you’ve got other stuff going on in your life that is taking up the brain power as well. I remember thinking at one point something has to give and the thing that’s going to have to give is me. It couldn’t be my mum. Her health was what it was, it wasn’t going to change. I remember thinking I’m going to get ill.

I went to the doctor and he said ‘on your way home don’t go home straight away just take an hour and go sit in a library or have a coffee’. And I remember saying to him, how's that going to help? That’s not going to give me an extra 10 hours in the day.

Then my mum got really ill. During a routine hospital visit she got an e-coli infection. I said to my boss ‘I don’t know what to do. I’ve got this situation. My dad can’t be on his own and my mum needs 24/7 care’. So they let me work from home one day a week, which was quite a big thing for that organisation at the time because there was no flexible working. I wasn't allowed to tell anyone.

They said, ‘oh, don't make a big deal of it because we don't want everybody asking for working from home’. It meant I couldn't really talk to other people about it or reach out for support.

There was pressure as well that when I was working from home I felt like I've got to show that I'm doing work rather than being able to work flexibly to care for my mum.

I remember looking on the intranet at all these really confusing policies. I asked for compassionate leave so I could take my mum to chemo and they said, “you can’t it’s not for that. You can take unpaid leave”. It was quite hard to find out what was available and to ask for something when you’ve already got so much other stuff going on.

As time went on I got more savvy about what I was entitled to. I would just go to my boss and say, ‘I need to work from home one day a week’. I think she wanted to be supportive, but there weren't really the processes in place for that to happen. Not as much as they could have been. I ticked the box on the equalities form to say I was a carer but nothing ever happened.

They had staff support groups but they didn’t have anything for carers. If there had been something, like an information pack which you’re sent when you tick the box to say you’re a carer, which tells you what you are entitled to it really would've made a massive difference.

I spent hours trying to find out on the intranet what was available. I could’ve spent that time doing other work. I remember sitting at my desk sometimes and thinking, my brain is overloaded. I can’t do anything. I might have even made mistakes that then had to be rectified. So if you have the information, if you feel supported and that people care about you, the employer isn’t going to lose anything from that.

When I told the people I managed, it was just really awkward. I don’t think they really knew what to say. But then later on, they told me that really made a difference to them. They said they were really glad we had those discussions because they were able to say stuff to me as well. But that was only because I felt confident to say something.

My line manager never asked me how my mum was or how things were going. If I was in a period of working from home, or if things had been bad for a couple of months, she might say “how are things with your mum?” But it was kind of in the “when are you going to be coming back to the office every day?” kind of way.

It always felt a bit like the onus was on me to ask for support rather than the organisation to say, this is what support's available or check how I was doing.

Sometimes it felt like I had a kind of work persona. I couldn't really talk to people about my mum being ill. As a result it was harder for me to have good relationships with people I worked with because I couldn't talk about stuff that was happening to me or impacting me.

Because my mum’s health went up and down, there were sometimes when I wouldn't be having any support and other times when I would need more support. But actually you kind of do need support all the time. Because even when someone you care for is doing well, they're still ill and you're still caring for them.

My mum died in the hospital around six in the morning and I remember thinking ‘I need to phone work’. I got the head of my department and she was brilliant. She said don't even think about work, we’ll phone you later in the week and we'll see how you are.

But then I remember getting a card from people saying, we're thinking of you and thinking, oh, so everyone knows. I wasn't necessarily ready for everybody at work to know.

Then when I came back, people didn't know how to talk to me or what to say or what to do – and it was awkward because I knew that they were aware what had happened.

There was a bit of an invisible line between those who had experienced a bereavement in their life and those that hadn’t. The ones that had would come up to me privately and say, you know, really sorry to hear about your mum, is there anything I can do kind of thing. They said that because that’s what they wanted when their loved one died. And the people who hadn’t experienced bereavement or didn’t know what to say were incredibly awkward.

I remember sitting in a meeting and a colleague was just staring at me. I remember looking down and thinking have I spilt coffee down me? Then I realised oh, no, it’s because I've got this big sign on my head saying my mum just died.

I ended up almost having to kind of go out of my way to make colleagues feel better. I had to kind of try and make a joke or something to show that I was still me. But actually, I didn't really feel like making jokes because my mum had just died. Some people would say I lost my dad a year ago and then they would kind of start telling about their grief which is fine. But at the time I just didn't really have the capacity for that. That’s something that employers can do, offer guidance to help people with what to say if someone has been bereaved or is a carer.

Employers can learn a great deal from Nikki’s experience, including:

• Provide paid carers leave
• Ensure policies are easy to find and have clear leave guidelines for caring and bereavement. Sharing examples of how other employees use the policy, for example working hour patterns, can be helpful for new carers.
• Once an employee shares they are a carer, have an information pack ready to share including signposting, support groups and leave policies.
• Provide bereavement and carers awareness training for colleagues including what to say and not to say.
• Ensure line managers feel confident supporting a working carer. This includes understanding flexible working arrangements and how to signpost to further support. The manager should be supported themselves.

Thank you to Nikki for sharing her story.