Carers urge: tell us about support

Mrs Black, whose 69-year-old husband has an aggressive form of dementia that has severely affected his balance, gave up work to look after him.

“It’s a very hard, 24/7 job,” she said. “He’s bigger than me and I’ve stopped him falling hundreds of times. If I leave the room for a minute, he has fallen by the time I get back.”

The advice offered by organisations like Jewish Care, Norwood and Jami, particularly on dealing with her local authority, was indispensable, she said, while members of her synagogue in Pinner, north-west London, have arranged for someone to relieve her once a week.

Gillian Rustin, who also lives in Pinner, and has been a carer for her husband for 20 years, said she often heard carers complains that “nobody told me what was available. Our shul started a group for carers but I just happened to see it — it wasn’t that anybody came forward to tell me about it,” she said. “People need to be made aware.”

She acknowledged that there was a reluctance among many members of the community actively to seek help in situations like hers.

“It’s difficult to balance between carrying on as normal in a difficult situation, and being up front about how much of a struggle it actually is,” she said.

Simone Barnett is a full-time carer to her 10-year-old daughter with severe learning disabilities. She admitted that, although people were generally sympathetic, “you sometimes do feel a bit isolated”.

She added that the community could do more to support the family members of carers.

“Particularly for siblings — there really isn’t anything for them that I know about,” she said.