Bereavement and work

Going back to work after a bereavement is always going to be hard. People don’t know what to say. They feel awkward. You feel awkward. There’s an assumption that with a little time you’ll ‘get over it’ and it won’t need to be mentioned again and everything can just go back to normal.

Bereavement policies and support at work tend to stop at compassionate leave, maybe some flowers and a card, the contact details of the workplace employee assistance programme, the odd check in, maybe an invite to lunch. Death isn’t exactly an uplifting subject, so it gets brushed aside. Best left to the individual to deal with and best left unspoken. Work is work after all, and despite it increasingly creeping into the personal, this side of personal it seems, is a step too far. It’s too personal. It’s too delicate. It’s too much. Whereas menopause, stress, health, wellness, wellbeing, mental health, flu jabs, fitness, sexuality – these are apparently OK. In fact this type of ‘personal stuff’ we are told we need to talk about more in the workplace to understand it (and so we should). We need to talk about them openly, encourage more dialogue. We have whole days, weeks, programmes, courses and people dedicated to them. We need to show we are inclusive and diverse by encouraging openness around such issues which previously were very much considered personal and nothing to do with work, but bereavement doesn’t seem to get this type of attention. No one wants to talk about it and very few seem equipped to deal with it.

My dad died in 2015, five years after being diagnosed with terminal prostate cancer. It was a tough five years and his death was hard to take. One minute your dad is there, laughing, joking, chatting, then he’s gone.

Losing a parent is something we all know is probably going to happen in our lifetime. Most likely later in our lifetime, but it will happen, however difficult it is to accept. Does this make the pain and grief any easier? Of course not, but it’s something people can relate to a little more and we just kind of get on with it regardless of the depth of our grief. It’s expected. It’s part of the order of life. When I returned to work after my father’s death, my colleagues could nod in sympathy, share stories of their own parents or grandparents and then it was business as usual. Was this adequate support? Not really, but it was a distraction from it all and that was OK at that time and in that instance. I didn’t really understand grief. I buried it all away until it felt easier somehow. I didn’t really realise the impact. Life had to go on. I had children and my mum to take care of and make life as normal as possible for them. There was no time to think about it.

Then my daughter died. It was on the 12th January 2022, after almost 3 years of cancer treatment. Your child dying is beyond comprehension. She was just weeks away from her 18th birthday. Her initial diagnosis wasn’t terminal. We were promised a cure. We went through everything available – chemotherapy, radiotherapy, immunotherapy, stem cell transplant, more chemotherapy. All in the midst of the covid pandemic. The one time we needed help and support, and we had to keep away from everyone. We were locked down in every conceivable way. And then, just as the pandemic was coming to an end, she died. Restrictions lifted in time for her funeral. Trying to work and care and support a child with cancer (or any one with cancer for that matter), as well as look after another child is hard enough, but coping with the death of your child and navigating bereavement is a whole other ball game.

I was told to take as much time as I needed from work. I was so grateful. The official work policy stated that compassionate leave for a bereaved parent was something along the lines of two weeks. Two weeks. To give some idea of how impractical this is, just getting funeral arrangements and a date for the funeral took two weeks, and the funeral itself didn’t take place until 6 weeks after she died. I was in survival mode. Just doing what needed to be done. Focusing on my son and the arrangements for her funeral. The injustice weighed heavy. I should have been organising an 18th birthday party, she should have been going off to university, living her life, but instead this.

I took three months off work. I felt lucky that I had such accommodating employers to allow me that much time, but I wasn’t ready to go back really. The guilt weighed heavy that I wasn’t there. It just added to the work guilt I had when my daughter had been ill and I had tried to work around it all, around the unpredictability of cancer with a global pandemic thrown in for good measure. I felt like I was failing at my work. I wasn’t visible enough, I couldn’t be present in every meeting, I had to change my plans at the last minute. I felt like I was inconveniencing everyone. No one can understand the erratic-ness of cancer unless they’ve gone through it. You can book timeout for appointments, but no one tells you about the waiting around in hospitals, the side illness and unexpected hospital stays, the blood transfusions, the late night dashes to have tests due to side effects of treatment or infections. It turns life upside down, inside out and back to front. And when you’re the sole breadwinner in the household, you are caught in an endless cycle of trying to keep up, catch up and keep some kind of work routine going because bills need paying and the hidden cancer costs are high – hospital car park fees, fuel, additional food, new clothes due to weight loss / weight gain – the list is endless. It was exhausting, and the fact that covid was going on meant that support services were at at standstill. I was exhausted. When you’re not the one that’s ill, workplace policies around long term illnesses are pretty much non-existent. But, I was grateful. Generally it felt like work was understanding.

After three months of being off work, the guilt got too much and I convinced myself I was ready to go back. I was worrying that everything that I had worked so hard on over the years was crumbling due to needing both time out when my daughter was ill and then time off after she died.

Going back so soon, even though at the time I thought it had been too long, was a mistake. I’d convinced everyone I was OK, but I’d been worrying that I was taking too much time off and that I would lose my job. The lack of government policy and guidance in this area, makes it very difficult to know what to do and whilst I can fully understand the difficulties for employers to know what to do in terms of time off and staffing and pay, until there is some guidance, or official policy around bereavement leave, this will continue to be a struggle for both the bereaved and their employers.

Returning to work was not easy. My state of mind was poor but I had no idea what else I could do. To add to it all, my office had moved during lockdown and there was lots of staff turnover so I felt like I was going into the unknown. We’d agreed a phased return but discussions didn’t really take place around what this would actually look like. Leaving the house and going into the office was an ordeal. I’d developed phobias following my daughters death that I didn’t understand or know I had up until I stepped out the house to go back to work and I was still battling with the injustice of my daughters death (I don’t think that will ever stop). I also realised that I simply was not the person I was before this had all happened. I felt crushed and overwhelmed by the outside world and yet here I was, travelling up in the lift to the office feeling like a wreck with a smile plastered on my face. I don’t remember much but it was strange. People I’d known a long time avoided me, some had no idea and said all the wrong thing and others were new and so I was just another person emerging from lockdown and back to the office. On the inside all I wanted was to scream about what had happened and go home to do nothing. Everything however was just normal. Life had simply carried on without me and without my daughter.

Returning to work didn’t quite go as smoothly as it could. No one was trained or equipped or briefed in any way to deal with a bereaved mother. The usual conversation was had around support from the Employee Assistance Programme and offers of ‘whatever I need’, but I didn’t know what I needed. I hadn’t been through this before. I didn’t feel like I could talk about what I was feeling. I just felt the need to get on with work and still feel guilty that I wasn’t fully available to my team. I felt like this was (silently) a big problem as it was mentioned over and over again – not maliciously, but in passing about the lack of adequate, full time support for my team members. It then took 4 months for someone from HR to check in, and that was off the back of a LinkedIn post about grief that I’d written. The chat was pleasant enough, but with high staff turnover having to have the same conversation over and over was distressing and the support that was planned never materialised as it got handed over and over between new staff. I found I was feeling more and more withdrawn and not part of the team anymore. For good or bad, I was left out of decisions so as not to add stress, but this made things worse. A wellbeing plan was supposed to be put in place but it didn’t happen and the phased back to work didn’t get followed up leaving me in limbo over what I was meant to be doing. I felt like grief and bereavement was grossly misunderstood and the effects greatly underestimated. I felt very alone and was depressed but I didn’t realise. I was just trying to keep going.

A year passed and things didn’t really feel much better. Other colleagues had also expressed how difficult their returns to work had been after bereavement. I started to research and learn more about grief and working and although it was a little late for me, I hoped that I could work with my employers to make a difference to others in similar positions. I was still overwhelmed with grief and also feeling guilty that I wasn’t working enough but things were beginning to feel a bit better and I was ready to get stuck back in properly again. It had been just over a year since I’d returned and then I got the news that I was being made redundant. It was felt that there was no need for my role anymore and so I was going to have to go through the redundancy process. A long drawn out process just to tell me at the end that I was officially redundant.

The timing (although I don’t know when there could ever be good timing) was damning. I had just about pulled out of depression and trying to fit back into the world and life and I was told I was being made redundant. An unpleasant experience at the best of times, but when you’re grieving, it’s truly traumatic. All the uncertainties and fears from when my daughter had first been diagnosed were back. My position as mother to my daughter who I had nurtured and looked after and loved had been made redundant without warning, and now my job that I had created and built up over years and years was also being made redundant. I thought of all the time I had sacrificed in order to be at work and at work events away from home for days on end, away from my children. I felt angry that I had allowed my work to take me away from my children, ploughing my energies into it, and now I had both my child and my job taken away from me. Whatever the reasons, that feeling of injustice was back. I was of course offered support and reminded that we have mental health first aiders and wellbeing champions at work, as well as the usual employee services. It took a while for me to take up the offer but I eventually spoke to a mental health first aider who turned me away and said they were at full capacity and couldn’t help and to try someone else. I guess it was lucky it wasn’t an emergency but it also made me think about how without proper training, support and guidance around the complexities of grief – and grief isn’t just about bereavement, there are many types of grief – how easy it is to get it wrong. I was grieving for my child and my job and no thought had been given to the impact that these two things combined could have on an individuals wellbeing. I’m not saying that I should have been spared from redundancy, a business decision is a business decision after all, but there needed to be thought and foresight of appropriate support to deal with the complexities of a grieving parent.

When you’re grieving you need to feel safe and secure. You need time. You need sensitivity. You need open dialogue. You’ll do anything for some normality and often that means just putting up with something to just stop the pain and uncertainty. The security of your job should not be something that is added to the uncertainties that follow grief. Whether it’s needing a phased return, flexible hours, someone safe to speak to at work, sensitivity around certain points of the year – these are just the basics.

So what am I saying? Being thrown into uncertainty again has been devastating in many ways and liberating in others. It’s allowed me to think and to really consider what I have learnt from it all. I would love to share my real lived experience of balancing work and the long term illness of a family member and then bereavement with People / HR teams, people managers, those with the influence and sway to make changes to how bereavement is dealt with at work. I would love to see bereavement support as a standard in the workplace and an understanding of how it impacts individuals. I would like to see everyone trained in how to support a bereaved colleague to reduce the discomfort around this area for those affected. I would like to see mental health taken seriously by workplaces. If they have mental health first aiders then they need to ensure that they are the right people who are also supported when things are tough for them. I would like to see responsibility around a team member’s welfare to not sit solely with line managers who may not have the capacity or capability to deal with these sorts of issues. I would like to see official guidance and policy from the government. I would like to see change. No one going through a bereavement should feel like they are a burden to their workplace. Simple changes and ways of working, can make a huge difference, and in this time of greater understanding about the human condition, death, bereavement and grief needs to be right up there alongside mental health programmes and policies. We can only do this by speaking openly about our experiences and needs and learning from those who are going through it.

It’s time for change.