A letter from a mother

A letter from a mother whose daughter, Greta, receives regular respite care through the City of Edinburgh Council carer Jen.

We thought that people should understand the importance of respite for our whole family.

I remember when the social worker first rang us to say that there was probably a family who could provide respite care for our little girl Greta. We were amazed that there were people so kind that they would do this as a job. But respite is so much more than that; Jen is part of the family, and Greta definitely feels like she is part of her family.

I remember the first time that we met Jen; Greta had been in Sick Kids hospital for over three months. Jen came onto the ward, and smiled at her and told her how lovely she was. Her husband picked Greta up in his big strong arms, and I breathed out, and thought, everything is going to be alright; there are people who will help us. This and the continuity of care is what makes this support work so well for us: Jen gives us valuable time with Greta’s sister who really needs and deserves time with us that is just about her needs. She is such a wonderful and loving young carer and sister, and she deserves this.

Jen gives my struggling back a break every week from lifting and physiotherapy, and also gives me a chance to breathe out and stop worrying about what is the next thing I should be doing, and when the next seizure will happen. The fact that Jen can take Greta even when she is ill, because she knows her so well, is a huge relief to us when we are struggling.

Jen looking after Greta gives my husband and I a chance to be a couple, to spend time together; talking about the difficulties we are facing, but also just enjoying being a couple. This regular weekend for us to relax together has kept our relationship strong and happy through a very demanding life. And the chance to escape for ten days each year is just the most wonderful thing for us.

All of this is made possible by having Jen as Greta’s respite carer. Because we trust her completely, we know that Greta is very happy when she stays with Jen and we know that Jen knows Greta so well that she can look after her and keep her happy and safe. For Greta this relationship is extremely important: because she finds it very hard to communicate conventionally, and because she is reliant on other people for all her physical needs, it is important that Greta spends time with people who she has developed a really strong relationship with, and this takes a lot of time for her: she has this with Jen, coherency over seven years.

Having Jen as Greta’s respite carer is what makes our family work: I am not exaggerating in saying that without her we would be a family in crisis.