"Matt was the administrator in our relationship," says Hayley Smith matter-of-factly. Two years have passed since her husband, Matthew Smith, died of cancer and she is still dealing with the loose threads of his digital legacy.
"When you're dealing with someone's death, you're suddenly asked for every single document," says Hayley, now 33, the same age as Matthew when he died in 2021. "And they were all in Matt's emails. "
The problem was that, in the aftermath of losing her husband, she couldn't remember his password. She had to guess and change the numbers until she finally found the right combination.
"And then having to scroll through all his emails was not a nice feeling," says the West Lothian charity worker.
The couple had only been married for a year and three months when Matthew, a hedge fund reconciliation manager, was diagnosed with stage 4 glioblastoma in July 2016 at the age of 28.
Although he initially responded well to surgery, chemotherapy and radiotherapy, scans in April 2020 showed his tumor had begun to grow back and in October 2020 he was told he had a year to live.
His decline was rapid. Matthew started having clusters of seizures. His speech was affected and the pair, even if Hayley had thought so, would have struggled to fully discuss the details of Matthew's presence online.
He was eventually admitted to the Marie Curie Hospice in Edinburgh, where he died on October 7, 2021, aged 33..
"Even though I knew Matt was dying, it was never something that crossed my mind. Only afterwards did I think: 'Oh great, how do I close his socials?'"
It is a problem that did not exist twenty years ago. What happens to our Facebook, Twitter, Instagram and TikTok accounts when we die? Should we come up with a plan now, or risk leaving our loved ones behind and making the decision about our digital legacy when we're gone?
For Hayley, the tsunami of digital record-keeping was unsettling, although knowing the key to unlock Matthew's phone made some things easier. "Everything I had to cancel was so stressful. Many of our joint accounts were in his name, our Netflix and even our Nectar card. I had to cancel his phone contract. Many of these places don't know how to talk to a grieving person. I've had some pretty disturbing phone calls."
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Hayley remembers them trying to cancel their Sky contract, which was in Matthew's name. "I explained that I was just one person now and I couldn't pay the bills, but even then they still tried to sell me things."
The problem with Facebook
Matthew also had investment portfolios and he had them all on apps, which Hayley had to untangle. "It took me about a year to get most of the things sorted out." But there remains one part of his digital legacy that she doesn't yet have control over: Matthew's Facebook page.
'I still haven't managed to close Matt's Facebook or make it a memory page. I tried uploading his death certificate ten times, but it never changed. I don't know if there is a bug in the browser I am using, but it doesn't seem to work.
"I just don't have the energy to chase Facebook. I'm so busy with work and still dealing with my grief that I don't feel like contacting them." As a result, she often sees disturbing messages appear on her feed.
'Some people don't realize he died. I've been quite vocal on social media, but there are people who haven't been active for a long time who still write him 'Happy Birthday'. You see that pop up and it's just horrible.
Her experience with the loss of Matthew has made her think about her own digital legacy. Hayley has appointed her two sisters as power of attorney and even has a 'If Hayley is hit by a bus' folder at her work.
She recommends that more people think about passing on information about their digital lives to their family or partner, to read in the event of a sudden death.
"We don't want the worst to happen to us, but you just don't know what's going to happen. It's horrible to think about, but it's necessary. It makes everyone's life easier when you suddenly can no longer make your own decisions."
Sarah Stanley is a Marie Curie nurse and expert in digital legacy issues for the charity. She says: "When you think of digital legacy, people immediately think of social media, but actually our mobile phones hold so much information about us. They're our cameras now, too, and we store so much on them that could be lost when we die."
She has direct experience of how painful a locked phone can be, having lost two families during the Covid pandemic. "We don't necessarily print photos like we used to. Many people also use facial recognition or fingerprint recognition."
'Make sure you get prints from your loved ones'
She urges everyone to think about how they can ensure their own family memories are not lost. "It could be going through the photos on your phone and making sure you get prints of some of your closest loved ones."
Digital legacy is something that Marie Curie is increasingly talking about with the people they support. Among the questions they ask people is whether they want friends and family to have access to their photos or messages after they die, whether they should have important documents saved in their email folders that others might need, and whether private documents are stored in their email folders. information they do not want family or friends to have access to.
"The conversation is moving and growing quickly," says Stanley. "And it's something we need to think about a lot more."
Making a plan for all the different online accounts you have is a first step. When it comes to social media, it's important that you know your options. Want to memorialize an account so that your timeline and photos are visible to friends, but no one can make changes to them?
It is also possible to create a Legacy Contact on Facebook - a person with the power to manage your account, but not the ability to create new messages or read your messages. You may prefer to deactivate it or permanently delete it so that its contents are no longer available. Although this may be the last thing on the mind of the person who is dying, it helps those left behind to think about the issue and, if possible, talk about what your wishes would be.
"The things you end up doing after someone dies are so incredibly stressful. The responsibility is all on you, which is very difficult," says Hayley. She says Marie Curie has been a huge support, both during Matthew's illness and afterwards.
It wasn't until July 2021 that Hayley was referred to Marie Curie. Before that, she cared for Matthew alone at home while she was still working. Marie Curie organized day and night visits and put her in touch with local palliative care services, with which she had previously had no contact. The support she and Matthew received inspired Hayley to work for a children's hospice in Scotland.
"I don't know where I would be without Marie Curie, they were phenomenal," she says. "Everyone processes grief so differently, but by talking about digital inheritance and making a plan today, you can protect loved ones from grief when you are gone."
Marie Curie is one of four charities supported by this year's Telegraph Christmas Charity Appeal. The others are Go Beyond, Race Against Dementia and the RAF Benevolent Fund. To make a donation, visit telegraph.co.uk/2023appeal or call 0151 284 1927
