Anticipatory grief – what the internet definition doesn’t tell us
- Alice Bunt
For some of us who have lost a parent to long- or short-term illness, the process of grieving sadly does not necessarily begin the day we lose them. For so many of us, we begin to grieve a life lost, and a person changed weeks, months or maybe even years before. This most complex and challenging set of feelings throws our brains and our bodies into complete turmoil, as we grapple with accepting that a loved one’s life may be cut short, whilst also doing your best to cope and focus on the present situation. A term which I never knew before my dad became unexpectedly unwell in March 2022 and spent months researching was ‘anticipatory grief.’
This, rather simply put, means the preemptive feelings of grieving that you might experience when your unwell loved one is still alive, but faced with a life-limiting condition or illness. But anticipatory or preemptive grief, in my experience, is rather ill-defined. This does not necessarily mean just the grief you feel knowing your parent is going to die, but rather a weave of interconnected feelings that come with seeing transformations and changes in a person due to their illness. And for many of us, it is both. For some of us, we can grieve abilities lost just through a diagnosis. This can mean grieving for the life they can no longer live, the way they looked, their physical ability to continue working, living, or thriving, as you may have experienced a huge plethora of radical physical and mental changes. In my experience, these complex feelings are often passed off by our brain as guilt. As young people, we are likely to feel guilt for being unable to control the situation of a loved one’s illness. In tackling and breaking down what anticipatory grief actually looks like, I want to remind anybody who is currently dealing, or has dealt with this situation, that it is not a package that comes neatly wrapped in a single box, and certainly we cannot always rely on the google definitions to help lead us.
My first insight into anticipatory grief arose most prominently in my life when my dad lost his ability to eat and enjoy food due to complexities with his cancer diagnosis. He, rather unbearably, spent a significant period of his battle reliant on a feeding tube. Ever since I was little, me and my dad always had a shared love for food, mostly when he would be taking me to my various sports trainings. Whether this was a sausage roll on the way back from my Saturday morning cricket, a bag of chips after Tuesday night training (with the evidence quickly discarded), a milkshake from the drive through after a trip to the garden centre, a sausage sandwich at our favorite cafe in Westerham, or the best, and most missed, a Sunday roast dinner (his potatoes and Yorkshires really were the best). For a man who created so many strong friendships and bonds over food; a coffee and cake break on his weekend cycles with his friends, or a curry from the Raj Bari with his besties, eating good food with people he loved was one of my dad’s simple pleasures. My favorite game to play now when I go out to eat is, ‘what would dad have had.’ I found myself in so much internal pain seeing his struggle with eating, as the small pleasures of taste and conversation around food were stolen away; the chemotherapy chemicals and blocked intestines made everything taste disgusting. Even discussing food in front of him caused pain, and it broke me that on multiple occasions he could not sit down with us for a family dinner, instead having to sit in the next room with the door shut because the cooking smells made him feel so unwell. I, and him, grieved for the times when he used to be able to make himself a coffee and a fried egg sandwich, and enjoy it whilst sat in his garden watching the world go by.
Another component of anticipatory grief that the internet doesn’t tell us about, is grieving the way your loved one looked. Dealing with physical changes are such a huge aspect of dealing with illnesses. I began processing the grief of the physical side of my dad as soon as he started chemotherapy. I felt I was losing him as he lost his hair, weight, and essentially just looked unwell. I grieved, and I still grieve for how he looked before his illness; a tall, good-looking man who gave great bear hugs, had a stubbly beard and a cheeky grin. As he quickly started to look physically different, his feeding tube was such a visible marker that he had been labelled with his awful disease. We always made fun of my dad for having stick skinny legs, but it was when I hugged him after coming back from a 2-week trip that the rest of his body now matched that. Feeling his bones when embracing him is a feeling I will never forget, as a bodily reminder of just how sick he was.
I finally want to touch upon anticipatory grief as it is more conventionally understood. Whilst my dad never had terminal cancer, his prognosis was not good, and we knew that his time would be limited. Whilst you may grieve the things that your person used to be able to do and enjoy, and what they looked like, you of course may also become fixated on what life will look like beyond their death. In my experience, generalized anxiety and loneliness became the biggest dark clouds in my life. A fear of not knowing when, how quickly, how, where, and so many other unanswered questions would storm into my brain every second, and fill it up, so I could think of nothing else. I never openly spoke with my dad about these feelings, or the fact that we both knew he was going to die. Sometimes I have regrets about this, but looking back, all I wanted to do was remain as positive as possible, and not further burden him with how I was feeling. As a young person dealing with the imminent loss of a parent or loved one, the hard reality is that you must deal with things that no person your age should have to. Inevitably, you must grow up pretty quickly. And sadly, there’s just no beating around the bush with that. It may not feel like the right time to express those feelings, but just sitting with your thoughts and allowing yourself to feel is okay. Even if you are not able to fully express and communicate with your loved ones, sometimes I found the moments of silence spent with my dad even more healing. We didn’t have to talk about it, but we could sit there and still acknowledge the immense love and heart wrenching pain of what he was going through.
Relief. A really hard word to talk about when it comes to anticipatory grief. This is so commonly associated with the turmoil of post-death. But relief can certainly be an anticipatory feeling, and something which we as young grievers need to realise it is okay to feel. As horrible as it may feel, relief is so natural, as broken down, all it really is is emphasising just how much we love that person, because we do not want to see them suffer. For me, inverting these feelings of guilt I had for feeling any sort of relief through the process of my dad’s illness helped to show me that it simply expressed how much I loved him. And a phrase which has helped me immensely in my journey of losing my dad as a teenager is ‘grief is the price we pay for love.’ Grief, whether anticipatory or not, all comes from a place of love, and we should therefore never pain ourselves with guilt or regret; we only feel the pain so deeply because we loved so deeply. There might feel like no right way to approach anticipatory grieving. Do you continue with your life, put it all on hold, or just sit and cry? And the reality is there is no singular right way, but lots of little ways. Even just understanding its wider definition can help us grapple with the complicated feelings that come with this unique experience.