Annabel pictured with Crossroads Care Operations Manager Nicola Wilson
To coincide with Carers Week, Jane shares her experience of caring for her daughter who has a rare chromosomal disorder —and how Crossroads Care supports them both.
‘Few people really understand the isolation, tiredness and stress of being a carer. I look after my daughter, Annabel, 15, with great love, but there are days where I miss my old friends and the freedom to be spontaneous, rather than always having to be on high alert.
‘Annabel was diagnosed at age two with a rare genetic condition that is given just a number — IDIC 15. She has autism, developmental delay, poor muscle tone and epilepsy. I have to look after her dietary needs, personal care, medication and many medical appointments.
‘Though Annabel is full of life and can be a real joy, her behaviour is very challenging and she has endless tantrums. Every single daily action such as taking a mouthful of food or cleaning her teeth requires relentless negotiation. I might get a sock on, only for her to remove it. It can take three hours just to leave the house.
‘Despite caring single-handedly, I was managing to work until the epilepsy arrived in full force. I felt so alone and began to really struggle until Crossroads came into our lives five years ago.
‘The charity provides a ray of light in the darkness; they have given me hope and friendship.
‘Their care support workers, who help me to care for Annabel, are highly trained, kind and positive. They celebrate all of Annabel’s achievements including her super skill in reciting books word for word. They give me a proper break from my caring role and feel like family.
‘Crossroads also run a Carers Book Club which has become my sanctuary. I often arrive frantic and late because I’ve struggled to get Annabel to school. The other mums always understand. I feel as if I have found my tribe there.
‘As a carer, I feel like I have a lot of negative energy directed towards me, but the yoga and massage that Crossroads provides through the Mental Health and Wellbeing Support Programme really helps me. Afterwards, I feel such relief and relaxation.
‘Crossroads are friendly, local and a small enough organisation so that you know everyone, and you are not lost in the system. Without them, life would be quite bleak.’
