I Started Grieving Long Before My Dad Died

As Ellie, 26, sat at the foot of her grandad’s bed in the days before he passed, she knew in her heart that he was already gone. "He wasn’t going to come back," she tells Refinery29. "Whoever was left struggling on the bed wasn’t the man I’d grown up loving."

After her grandma passed away last year, Ellie knew her grandad didn’t have long left. The first time she visited him after he fell ill for the final time, it hit her that this was it. "He’d been ill before but he always had my grandma by him to help him power through," she says. "This time, though, we were watching him fight an uphill battle that he didn't want to win."

Although he was still alive, Ellie was already grieving for her grandad.

Anticipatory grief refers to feelings of grief that occur before an impending loss. This can be anything from a failing relationship to the inevitable death of a loved one due to old age or terminal illness. Research has shown that it’s similar to conventional grief, although one study found that it was more likely to be associated with higher intensities of anger and loss of emotional control.

"Anticipatory grief starts as soon as your loved one's life is put into question," explains Maria Bailey, a bereavement counsellor and founder of Grief Specialists, a collective of grief experts dedicated to supporting anyone experiencing loss. "When you know your loved one is going to die, it’s like death by inches – you start losing little pieces of them, rather than the whole of them at once."

In this sense, it’s almost like microdosing grief. On the outside, everything is normal, especially when your loved one is still somewhat healthy. But then, out of nowhere, it hits you. It’s like an ice pick headache: a sharp, sudden, stabbing sensation that hints at what’s to come. Suddenly, all those happy moments – birthday parties, Christmas dinners, time spent together – are blemished by the inevitable. 

What makes it all the more difficult is that anticipatory grief feels impossible to talk about. Ellie struggled to open up to anyone about how she was feeling. "My family were obviously in the same boat as me but they were either running off fumes from staying by his bedside 24/7 or in denial that he was passing," she says. "It felt wrong confiding in my friends that I was grieving the loss of someone who was still alive."

Carolyn Gosling, a grief recovery specialist, says this is because we're not socialised to deal with grief in general so we aren’t tuned in to its nuances. "The expectation is that grief only really applies when you've already lost something or a death has happened," she tells us. "So when you anticipate loss, it’s even more alien." Even if you are accustomed to death and grief, nobody can prepare for how it feels to grieve someone who’s still alive. 

"It was difficult," says Ellie. "There’s a weird layer of guilt – sometimes I’d think I was jinxing his life, even though I knew deep down that wasn’t the case and it was going to happen whether I came to terms with it or not."

When you’re dealing with anticipatory grief, you’re not just grieving your loved one, you’re also grieving all of the moments they’re going to miss: watching you walk down the aisle, for example, or helping you decorate a new home. Knowing that they won’t be there to hold your hand in times of crisis can feel selfish but these feelings are completely normal. 

Gosling calls this a loss of hopes, dreams and expectations, which causes you to grieve what you thought would be your reality. Bailey suggests asking your loved one to write a letter that you can come back to on those big days, so they still get to be part of the occasion. 

Then there are practical concerns, such as life insurance, wills and funeral preparations. Bailey says it’s important to embrace these conversations and make sure your loved one knows that everything will be taken care of. "That’s what they’ll need," she says, adding that having these conversations before someone dies can save a lot of added pressure afterwards.

Gosling also warns of turning to unhealthy coping mechanisms such as substance misuse or, in 22-year-old Eliana’s case, disordered eating. After a stem cell transplant, Eliana’s dad developed graft versus host disease, which caused the new cells to attack his body, and was taken to hospital. 

Eliana flew out to be with him in early November, three months after he fell ill. Just after she arrived, she was told he had only two days to live. But after being taken off his medications, Eliana’s dad made a small recovery and managed to live for another three weeks. It was a rollercoaster: Eliana went from reconciling herself to her father’s death to having hope that he would survive. 

Fraught with anxiety, sadness and a confusing cocktail of hope and hopelessness, Eliana couldn’t bring herself to eat. "I was so triggered," she says. "I lost so much weight." Then came the guilt – that she hadn’t spent enough time with him – followed by the bargaining. "I basically went through the stages of grief but before he’d actually died."

It’s like being stuck in emotional limbo, especially when there’s still hope. Yet it’s important to accept how you’re feeling. Bailey suggests labelling your emotions and allowing yourself to sit with them before putting them behind you. Although it can be difficult, she adds, it’s important to talk to someone about what you're going through, whether that's a trusted loved one or a counsellor.

When Eliana’s dad did pass away, her anxiety subsided and she was able to eat again. "I was just so exhausted," she says. Ellie felt the same. While the post-death grief hit her like a train, Ellie says there was also an overwhelming feeling of relief that her grandad was finally at peace. 

This is one benefit to having a long goodbye: not only does it give you time to reconcile yourself to your loved one’s death but it gives you the chance to leave nothing unsaid. "This is one of the main reasons why people get stuck in their grief," says Bailey. "They haven't had the chance to say goodbye or tell somebody they love them, say thank you or apologise for something they did 10 years ago. So use your remaining time well."

This is something Eliana was grateful for. She says it’s important to take pictures with your loved one, even in their last days, and spend as much time with them as you can. "Even if they’re not in the best state of mind, even if they're sleeping, just sit by them. Talk about all your favourite things and reminisce. Watch them, hold their hand, because you're going to miss that so much when you can't do it anymore."