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A carer’s story

FGC allowed the network to organise support for the primary carer

Bob* and Norah* live together in Camden. Norah lives with Alzheimer’s Disease and had contact with the Camden Memory Service as a result. The Memory Service referred her to the Adult Social Care team who felt that FGC might work well for the couple. Eva*, a local FGC Coordinator was asked to connect and work with them. Eva made contact with the couple and set up a FGC meeting. She thought that the focus of the initial meeting would be planning how Norah could get the help and care she needs whilst also thinking about Bob and his wellbeing.

At the time that Eva first made contact, Norah was staying awake most of the night, and Bob was feeling the impact of sleepless hours on his own health. The couple were already getting support from family members and a small amount of help from a care agency arranged by the Council’s Adult Social Care team. Bob was finding Norah’s behaviour challenging at times and struggled to find time for himself – he did not want their family, friends and wider social network to know the extent of their struggles.

At the first FGC meeting Eva arranged, Norah, Bob and other people who were there agreed to explore whether it might be possible for Norah to get more support through adult social care. They also identified a friend and a family member who could go out with Norah for a walk and tea, to give Bob a bit of a break. People also made arrangements to support Bob to do more to pursue his own personal interests. This included attending virtual meetings in a room in their house. To do this Bob was clear that the room needed to have a lock and that he would need to do it without Norah’s knowledge, as she would be very distressed and interrupt his much-needed time alone.

Norah, Bob and their family have had three FGC meetings so far, and although they have been dealing with one issue at a time, they have found implementing the changes difficult. In the latest meeting, Bob was preparing for a trip to another country. With his understanding of how an FGC can help people come together to help Norah he asked for another FGC  meeting to ask people for help to coordinate Norah’s support and care while he is away.

Eva is clear that everyone involved found the FGC process useful as it allowed them to discuss issues and focus on how they can best support Norah and Bob. All participants thought the FGC was especially supportive of Bob as primary carer and support for his wife of many years.

*all names have been changed