Untangle Grief
A Tech-for-Good Business Supporting Grieving Individuals
Interview by Caitlin Gray
After someone close to us has died, we are faced with multiple challenges for which there is still not enough support. Aside from managing our own pain and loss, there is also funeral planning, sorting through assets and finances, closing accounts and potentially the need to support children or dependents. Untangle Grief is a UK based tech-for-good start-up founded by Emma Dutton and Emily Cummin who both, motivated by their own experiences of grief, developed a service that practically, emotionally and socially supports the bereaved. We spoke to Emma to ‘untangle grief’ with her and better understand how they have been able to provide support to grievers over the last year.
What does the word grief mean to you?
There's a clichéd quote about this, but one which I think offers a good explanation. It's actually from Doctor Who, ‘Grief is just love with no place to go’, which I think is a really beautiful metaphor for what grief feels like. When you have close relationships with people and they die, you still have that love, that care and that relationship with them. But the difference is you can't really express it. You can't communicate with them, you can't see them. It’s that feeling of love with no direction, no target. That's what grief feels like. Your side of the relationship doesn't end just because that person isn't alive anymore.
Have you had a personal experience of grief?
When I was 20, my dad got diagnosed with terminal cancer which had already metastasised into his brain at the time, so it was already stage four when it was discovered. He then lived for 20 months after the terminal diagnosis. There was lots of chemotherapy, radiotherapy and surgery and lots of medical intervention to try to make him comfortable and add some time onto his life. And then he died when I was 22, and it was just before I had graduated from university. It was quite a hard time. It's funny because my friends were having all these graduation problems, you know, finding jobs and finding somewhere to live. And I think for me it put things into perspective. I just didn't really care at the time. It just didn't matter anymore. I thought, ‘OK, cool, well I'm going to go home and look after my dying father now.’ Just as I was finishing my degree, I was able to go home for a few weeks and he died while I was at home. It was nice to be able to be there. But it was quite a shock to the system being so young and being confronted with what death really looks like.
I’m really sorry for your loss.
Thank you.
And so you founded Untangle Grief, a tech-for-good start up. Where did the idea for the name come from?
I was just sitting on the bus on the way back from Liverpool Street to my house and I think it was a kind of unconscious thought sitting in the back of my mind. It's got this physicality to it that I think adds that tangible dimension of what you're feeling as a grieving person. The way I see it, you've got the paperwork side of things, your friends, your family, and it's all this big mush and you have to just kind of sit there and untangle it all. Just like untangling a web of threads. It just came off the top of my head and then I googled the domain names as soon as I got home.
One thing that Untangle Grief offers is help in sorting out the practical side of things after someone has died. What is some of the unexpected admin that comes up after a loss?
If you’re at the point where a loved one has died it’s obviously incredibly difficult and traumatic, regardless of the circumstances. In my mum's case, she'd been caring for my dad for the last 20 months before he died. She was already physically exhausted. And then you get basically a whole new job because, all of a sudden, you are essentially managing the administrative closure of someone’s life. What’s especially hard is telling the same story to every person on the phone. Every time she had to ring Sky or BT or whatever, it'd be the same process. She'd get through to normal customer service, then have to say, ‘this is a bereavement call’, then be passed on to the bereavement team. Then she’d tell them the same story ‘my husband has just died.’ That's really hard to talk about. But when you're doing that 10 times a day to all these different providers, it really takes it out of you.
She also had to provide proof of his death and organise his death certificate - it's all very old school. You still have to send in paper copies of death certificates through the post to all these different people. She was having to pay bills, she had to work with the solicitors to be able to access some of his assets and his savings accounts. And at the same time, her own financial situation had completely changed because she now had one less income for the household. Could she pay for all the bills? Could she still live in the house? Could she afford to? She’d had to take money from her pension because she’d had time off work as her husband had been terminally ill. You’re just really not in the headspace to start sifting through those fundamental life changes. It all comes at a time when really all you should be doing is sitting with your family and taking time to process things and heal. The last thing you want to be doing is filling in forms. It is just a real headache.
What were the processes and thinking behind the resources that Untangle Grief offers?
We offer practical, emotional and social support in one place. Our website provides useful guides on all the different things you'll have to do, and you can also find the right professionals to help you through it. If you need to talk to a solicitor, you can do that. If you need to talk to a therapist about how you're feeling or how you're sleeping, you can do that. Then there’s also the community side. We have online forums and an App which offer a place to talk to others who can relate. People who are dealing with the same experience, dealing with the same paperwork, filling in the same forms and have the same questions. And we’ve found that the combination of practical and emotional support has been incredibly important because it's very much two sides of the same coin. And by uniting it in one place, it means that people know they can easily find this information and don't have to spend hours googling, because there just isn't the time or the capacity.
Could you tell us about some of the people who have successfully used your resources?
We had some really lovely feedback from a customer recently. She had downloaded our app about ten days after her husband died. She said that she wasn't quite sure what she was looking for or what she needed. She was still really in a state of shock, going from one day to the next like a zombie. But now, looking back, she’s so happy that she did stumble across us because of the amazing support network she has created. She took part quite heavily in the community side of things and I think that's important, being able to be around other people, ask questions, not feel alone, feel normalised. That just made all the difference. Hearing things like that is really wonderful.
In terms of the more practical side of things, there was a really interesting case when someone joined one of our support groups and they were talking about how they were struggling to get time off work. They didn't know what they were able to ask of their employers. We were able to provide them with the right guidance and advice to go to their employer and actually get time off that they needed. It can be quite tricky in terms of legislation as there isn't actually the legal protection to have time off after a bereavement. So we are able to help in a very practical way and give people hands-on advice on their specific situation.
Have you noticed a shared challenge or a pattern amongst people seeking support with Untangle Grief?
My initial instinct is to say no. I was going to say that everyone's experience is completely unique and the things that they need and the situation that they're in is incredibly personal. However, I do think that there is a real seeking for others who have been through a similar experience. That is something that is very innate to human nature - the need to find others that can share our feelings which help us feel less isolated. I think by creating this space and this community, it has allowed those kinds of people who are seeking that closeness to actually find it. And that’s something which was missing from their daily lives and from their friends and family circles. It’s just so powerful having someone say, ‘oh my god, I know, right?’ It can make such a difference to someone because they suddenly feel heard and they feel validated. I think it's been really impactful in that way.
Is it possible to talk about grieving our pre-Covid selves or a pre-Covid world?
We saw a 300% increase in our membership sign ups at the start of the first lockdown last year. What was really interesting was that it wasn’t necessarily people who had recently lost loved ones due to the pandemic, it was actually quite a lot of people who had suffered losses around 5-10 years ago. Because of the nature of lockdown, and through the constant media conversation around death and daily death tolls, they found that that feeling of grief was coming up for them again and they wanted to find a space to talk about it. It was affecting people who had lost people years and years ago. Lockdown has been hard for people. And by being confined to our houses and to the same four walls, it means that we’re sitting with those uncomfortable feelings for much longer without really being able to process them in our usual way. There is definitely an element of grieving our past lives, our freedoms, things that made us feel human and happy.
But on the other hand, it’s helped people who were already grieving and felt incredibly alienated and abnormal. It’s given us a way of communicating that feeling with others who haven’t lost loved ones. Being able to open up that dialogue to everyone has been really impactful because it has normalised what grieving people feel like.
People in our communities have also felt a kind of catharsis in that they’re no longer missing out. They can take their time. Days are quite predictable at the moment, in some ways they’re too predictable, but they can take what they need from that routine. For example, we run Zoom support groups on a Sunday and people find having that ritual really comforting. On Sunday at 11am, they sit and they think about this person with others and then maybe they feel some stuff afterwards. Then they go for a walk and feel like they’ve opened the tap a little bit and let some of the pressure out. I think what lockdown has done is allow people to have that routine and that ritual around processing those feelings.
Covid has encouraged a lot of people to talk about grief which is great. But people who have lost loved ones worry that these discussions will stop when things ‘go back to normal’. How can we make sure that this is something we keep talking about?
I feel like with this public consciousness of grief, once the box has been opened you can’t un-feel those things, you can’t un-have those experiences. So many people have lost loved ones. We have such close access to these stories and we know these families. It’s no longer, ‘I read this in the news’ or ‘this one day will happen to me.’ It’s our friends and our neighbours, we’ve all got these really horrible stories of what’s happened in the last year. So, I think this conversation around grief has just begun and that won’t go away.
Do you have any guidance for someone who is grieving now and how they can look after themselves?
I think being really patient with yourself is important. It’s really cliché again but grief can appear in lots of different forms. It can be really physical, it can be aches and pains in your body, it can be fatigue, it can be having brain fog. It can be very emotional, you can cry, but you can also not cry. That’s one of the trickiest things because we have this image of what a grieving person looks like. But the way your body processes it might look completely different. And there’s no way of doing it wrong, there’s no set path to go down. It’s not like month one you’re going to feel angry, month two you’re going to feel sad. It ebbs and flows as you continue through life. And even years down the line there might be a day when you’re just like, ‘oh I feel terrible’, and that’s totally normal. Being patient with yourself, being patient with how your body is responding to what you’re going through and resting, whatever mechanisms work for you. It’s just having the awareness that your mind and body is going through one of the most difficult experiences it will probably ever go through. So just respecting the process is really important.
Do you think it’s possible to find meaning in or after grief?
Yeah, I do. This is something that is wracking my subconscious at the moment that I haven’t really put words to yet. Death is essentially the biggest instigator for change that I think any of us can go through. There’s nothing else that inspires us to change more than death, because it’s the ultimate thing that happens to humans in terms of finality. And that change can be tiny or it can be massive. It’s quite common that people run marathons for a charity because a loved one has passed away. We look at our lives and really think, there’s a time limit here, what are the things that are important to me. This person has died, and you realise life’s too short so you quit your job and go travelling. Death is the most confronting thing and the scariest thing to our real animalistic selves. I do think it really forces us to look in the mirror and ask what we really care about and then usually make positive changes.
Death often also changes your personality and the way that you function as a person in the world. For me, I became a lot more sensitive and emotionally aware after I lost my dad. You kind of get shocked into that harsh reality of seeing someone die. Literally and physically seeing a human being die is so impactful that I think it really does change your perspectives on what’s important to you. I think it’s quite common that people’s friendship circles suddenly become a lot smaller, they’re much more selective with who they give their energy to and spend time with. You do just become more empathetic because you’ve gone through this really difficult thing and you’re able to connect with people on a more emotive level. Especially others who have lost loved ones. There’s definitely a personality shift and you start prioritising what really makes you happy and what you really value.