A carers guide to understanding grief
Grief is a complex emotion which is associated with the pain of loss, and for carers who have been intimately involved in the care of someone who has died, the grieving process can be particularly intense. When someone you have been caring for dies, grief is a natural process that may have started to unfold even before their actual death, and is made up of lots of different thoughts, feelings and emotions.
Grief is not linear, and there might be waves of shock, sadness, despair, anger and hopelessness. No two people process grief in the same way, even when they are grieving the same person but there can be times when you might feel stuck, numbness, or as if you're not feeling anything at all. Your experience of grief is unique to you, and being able to recognise how it might be expressing itself through you means you will be more able to take steps to look after your wellbeing and seek support when you need it.
Different types and experiences of grief
Grief can arise in any situation where someone experiences a loss, which means that it you can grieve even if someone has not died.
Every type of grief will look different, but you can find out more about each of them below:
Bereavement is the intense feeling of losing someone who has died. Grief from a bereavement can often be long term, with strong emotions emerging at unexpected times meaning it can sometimes be difficult to identify what you are feeling as grief.
Bereavement for carers is not only the loss of someone you have been caring for, but the loss of your caring role that had formed part of your identity. Your familiar network of professionals and your health team will no longer be around, certain furniture might be removed and established routines will fall away, and you suddenly have time that is not being filled in the way it used to be.
It is important to recognise the impact that this huge change can have on you, and it is very natural to experience feeling lonely, out of control and lacking in purpose. It can take time to adjust, and it is important to process how you are feeling, talking to others and seeking professional support during this process will allow you to process how you are feeling, reducing the risk of any long term effects of bereavement.
If the person you are caring for is at the end of their life, you might experience anticipatory or pre-emptive grief. This is particularly felt by carers who notice changes in their personality as they approached the end of their life, or they find themselves preparing for life without them. This can bring up strong emotions and can sometimes lead to carers pulling away or starting to detach from the person they care for. Because no one can predict exactly when the person you are caring for will die, anticipatory grief can be particularly wearing. You might feel always on alert, which can be very draining. Over time, this can leave carers feeling tired, anxious and sometimes irritable.
These are all normal feelings and responses to a huge amount of stress on your physical, mental and emotional systems, and just being aware of that can bring relief at a time when so much is going on for you. If you are someone who has experienced anticipatory grief, you may be at a different stage in the grieving process to those around you when the person you have been caring for dies. Knowing this can help you to be aware that others will need time to process their own loss in the way that is right for them.
‘Traumatic grief’ describes what might be felt if you have experienced losing someone due to sudden death or in a way that is unexpected or particularly shocking. There is more information on this in our article on Managing the unexpected death of someone you have been caring for.
Ambiguous grief is a term to describe how it feels when you have ‘lost’ someone or something but it is not due to death. A change in your relationship, changes in the behaviour of the person you are caring for, or the person you have been caring for going into a care home are all situations that can trigger ambiguous grief. This can often feel like grieving the loss of the person, the relationship or the life you once knew.
You might also experience grief over plans that will not now come into being and grieve the future life you had expected to enjoy. This can bring feelings of frustration, despair and anger with it, and a feeling of being out of control. Managing this type of grief can come when you allow yourself to express those intense feelings, and professional support, like counselling or therapy, can support you through this process. Then, in your own time, this can lead to you slowly accepting what has happened and gently being more open to the possibility of a different future life.
Managing your grief
If you are experiencing grief, simply acknowledging what you are feeling at any stage is the first step to allowing grief to move through you, and to feel some measure of relief on the other side of that. Our guide to managing difficult emotions might be useful here. It explains that all feelings and emotions are the natural way your system is trying to process your experience of loss, and these feelings will evolve and change if they are allowed to be felt and expressed.
Thinking ahead
Whilst it will naturally take time for you to be able to think about what might come next for you, at some point you might start to consider what life could be like for you beyond the caring role that formed such a large part of your identity. This can seem daunting for many people who have been bereaved, and our article on thinking about life after your caring role comes to an end has been put together to support you for when it feels right.