By Amanda McCarren
tide Head of Development and National Lead for Scotland & Northern Ireland
In society today it is commonly acknowledged, accepted and permitted to experience feelings and behaviours associated with grief and bereavement when someone dies. Even if you look up definitions in the dictionary for grief and bereavement you will frequently find words such as death, dying and the loss of a loved one. What these definitions and society don’t often acknowledge, accept or permit, is that when you are caring for someone with dementia you will experience feelings of grief and bereavement whilst the person is still living.
The lack of awareness of “living” grief and bereavement is not only limited to professionals but in many cases to carers themselves. They may be experiencing feelings that they cannot explain or articulate to others. Often these will be feelings of grief and bereavement that they have not recognised in themselves.
Carers can experience grief and bereavement associated with a number of aspects of caring for someone with dementia including; grieving for the life you expected to have, grieving for the loss of relationship or connection with the person, grieving for the life you used to have, grieving on behalf of the person with dementia, grieving for the adjustment in expectations of what you are now able to do, grieving for the loss of your employment, relationships, hobbies, time to yourself, identity and sense of self.
Carers may also experience feelings of grief and bereavement at points of transition e.g. when the person with dementia is admitted to hospital or moves into a care home or has a significant deterioration in their condition or symptoms. Carers find themselves in a sustained cycle of both complex and anticipatory grieving patterns which have a profound physical and psychological impact on those carers and those around them.
Talking about it is difficult and often met with a lack of empathy and the justification that “you are lucky, you still have them here”. This creates feelings of shame and guilt in carers and further contributes to the need to internalise these feelings and not to admit to having them.
tide want to lift the lid on this taboo subject and shine a light on the real life experiences of carers of people with dementia. We do this in hope that other carers and professionals gain an understanding and awareness of this issue, and that it helps to influence and change practice and support for carers.