When you care for someone with a serious illness your relationship with them can change. Your role as a carer may dominate your role as a spouse, child or friend. This can be difficult to accept. It can leave you with a sense of grief even though the person is still alive. Changes in relationships can begin soon after diagnosis or later. As the illness progresses your relationships may continue to change. For people with dementia and their families the effect of illness on the person’s memory can mean the sense of loss is even more intense.
Your role and identity as well as that of the person will change in a few ways. But it is different for everyone, there is no typical pathway. As the illness progresses relationships will need to be reframed and renegotiated.
With dementia the loss of shared conversations and feelings can often mean that emotional and physical intimacy is lost. Without memory it becomes difficult to share past experiences. As the illness progresses being physically close may become more difficult. Some people may lose interest in sexual relationships and intimacy, others not. Talking with your GP or a counsellor can help you to deal with your emotions.
As your relationships change you may experience a sense of grief and loss. But because the person is still alive you may have mixed feelings. Unlike death there is no closure. This sense of loss might also occur when the person moves into residential aged care.
When the person moves into residential aged care you may feel a mixture of relief, loss, grief, and guilt. But as staff take on caring tasks you may be able to return to your previous role as a spouse, child or parent or build a different and new relationship.
Dementia Australia has a discussion paper on Relationships and Dementia (861kb pdf).
CarerHelp (515kb pdf) has a fact sheet on information on Relationships and children (515kb pdf).
Healthtalk has a series of videos from carers on their changing roles and relationships.
Page created 29 March 2021