Dementia Action Week aims to raise awareness to improve the lives of people affected by this debilitating condition. Author Adam Land has written the third blog in the Bereavement and Loss series.
Anticipatory grief is triggered by an impending loss which can be experienced following any traumatic life event including bereavement, redundancy or divorce. It is most commonly experienced by people caring for a loved one struggling with a terminal disease, such as dementia or cancer, and brings its own set of harrowing experiences and feelings.
Many people who provide care for a loved one with a terminal diagnosis describe a strong, sometimes overwhelming need to provide protection and support. This can often come at the expense of their own personal mental health and quality of life. This can also be accompanied by pangs of guilt or inadequacy that all of their efforts are somehow still not quite enough.
Anticipatory grief is different to the kind of grief felt following a death, and each individual will experience it to different degrees, and in their own way. It’s also important to remember that anticipatory grief experienced before a loved one’s death doesn't lessen or shorten the impact of the grieving process after death.
Many people who experience anticipatory grief feel that they don’t understand what is happening to them, and can feel that their actions and feelings are unhelpful or irregular. Some of our Civil Service colleagues have been kind enough to share their thoughts and feelings on their experiences of anticipatory grief.
Clare from the Department for Education
“When my dad was diagnosed with an aggressive, terminal brain tumour, I immediately felt a mix of conflicting emotions. Obviously, I was devastated. I thought of all the things he would miss, and dreaded the prospect of watching him suffer, and ultimately losing him was unimaginable. In my darker moments though, I also found myself researching what his death might be like and thinking about how it would happen. I now know that this is normal and forms part of what is known as anticipatory grief. At the time though I felt dreadful about it and didn’t share my thoughts with anybody.”
John from the Maritime and Coastguard Agency
“Over the course of six months, my world had been turned upside down. I had been through a variety of different emotions: denial, it’s not going to be serious; anger at the delays in the system; a sense of loss when travelling to and from the hospital and guilt that I wanted her suffering to end.”
Judith from the Maritime and Coastguard Agency
Seeking help with the difficult feelings if you are caring for a loved one in these circumstances is vitally important. Judith talks about the help she received from her GP.
“I have found myself struggling to cope; my anxiety levels increased and I started to get stressed at small everyday things that previously never bothered me. But I didn’t recognise these emotions as grief until I had a conversation with my GP. She suggested that I might be grieving for what I had already lost and in anticipation of what was to come – which made complete sense. Recognising my feelings as grief has helped me deal with them, but it is hard when people around you don’t also recognise that you’re grieving. They are sympathetic about our situation, but they see that my parents are still alive, still present in my life, so how can I be grieving?
To others experiencing the same feelings, I would encourage you to talk about it, tell people how you’re feeling and seek some help to deal with it. Above all, know that this is a normal, understandable way to feel, and that you’re not alone.”
Sujata from the Ministry of Housing, Communities and Local Government
The difficulty of the loss of the loved one for whom we have been caring for is poignantly described by Sujata from the Ministry of Housing, Communities and Local Government.
“What starts with you having to take days off for their hospital appointments (then social services appointments, etc) will at some point, end with you holding their hand whilst sitting next to their bed. You will be counting the gaps between their breaths and wondering if they're clearing their throat or whether it’s the start of ‘Cheyne’s’ Stokes’ breathing.
One day you will be an ex-carer. The revolving door of carers, district nurses, GP visits and whoever else has been in attendance to your loved one will draw to a halt. And all the times you had sleepless nights, messed up work patterns and missed chances will be replaced by silence. You will have more time on your hands than you know what to do with. This will be your after-life.”
I am so grateful to Clare, John, Judith and Sujata for sharing their stories. If you are facing similar challenges, I hope that their experience will help you understand that you're not alone and that your feelings are a natural response to a very difficult situation. If you are a colleague of someone in this position, I hope that this blog helps you support that person with empathy and compassion.
If you need support please do reach out for help. Your Employee Assistance Programme can provide support and counselling, and your own organisation may have a carers network (details will be on your own intranet) who provide support for colleagues with caring responsibilities.