The death of someone we love is never easy, but it can be even more challenging when someone in the family has dementia. It can be hard to know how and when to tell the person with dementia about a death in the family. This can become even harder when the person with dementia doesn’t hold onto the memory that a loved one has died. There can be extra distress for both a carer who may also be grieving and to the person with dementia who re-experiences the pain of the bereavement each time they are told of it. Even old bereavements may seem as though they have just happened.
It’s good to think ahead about when and how to share the news of the death of a loved one. Suggestions on how and when to pass on news of a death to someone with dementia can be found in telling about a death. Using simple clear language that includes the fact that a person they loved has died helps avoid misunderstanding. Practical ways to help the bereaved person with dementia to understand and accept the death include speaking about the person who has died in the past tense. It might be helpful to give a memento that may help them to feel closer to the person who has died. This could be a picture, an item of clothing or a piece of furniture that might provide comfort. The booklet Bereavement Loss and Dementia from Cruse includes a simple pictorial guide on the journey through loss and bereavement.
Bereavement for carers of people with dementia
Grief can start even before a diagnosis is reached. A loved one may gradually lose abilities and there is the loss of being able to share memories together. There is sadness at gradually losing the person who “was” rather than who they are now. As the dementia progresses there may also be less sharing of normal activities of daily living and the carer may lose the freedom to live their own life as fully as they may once have intended. Support for carers and their families in Dudley is available from Dudley Carers Hub and from the Dementia Gateways. Help is available to develop coping strategies as both individuals come to terms with the diagnosis and role reversal that can occur. If you are a carer it’s also important to look after your physical, mental, emotional and spiritual wellbeing to help you to cope as well as you can with the demands of your caring role.
Demands on carers
Caring for those with dementia can be difficult and may last for a long time, although some find benefit in using assistive technology to calm, stimulate and to reduce agitation. A decision to move a loved one with dementia to residential care may leave a carer feeling a loss of purpose, loss of person, and possible pressure to “move on”.
When their loved one with dementia dies, their carer may find they are exhausted. While caring may have demanded many hours of care every day, bereaved carers may also feel that they have lost their main focus in life. They may also have lost someone who they were deeply bonded to, having cared for them through good times and bad.
Support for you in your grief
After the death of a loved one family and friends can help by being there to listen and giving opportunity to share memories. There may be the possibility of re-connecting with friends or family where links may have become weak or fractured during an extended period of decline in the loved one with dementia.
More information about bereavement and grief is available here.
Additional support for bereavement is also available:
Dudley Listening and Guidance Service offers up to four supportive phone calls – call your GP surgery and ask to be referred to Listening and Guidance.
Mary Stevens Hospice provides a telephone support line for bereavement 01384 445417.
Grief Chat can connect you to an online counsellor.