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A Newbie caring for my 27 year old Rett daughter - Carers UK Forum

A Newbie caring for my 27 year old Rett daughter

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Hi everyone! My name is Sue and I live in Poole. My husband and I look after Amy, 26, who has Rett Syndrome. She is lovely and very happy, but as we get older we're beginning to struggle a bit with the 24 hour a day care. We both really want to keep Amy here at home with us for as long as we can. My husband works full time and I have a part-time job and I'm Amy's primary carer. She attends a local day centre for adults with learning disabilities and charms everyone there! I just wondered if there was anyone else out there in the big world coping with a similar situation? It's just good sometimes to let off steam to someone who knows exactly how you're feeling. Much as I adore Amy, there are days when I feel like going back to bed and pretending that this life isn't mine! I'm sure I'm meant to be living a life of luxury on a Sunseeker yacht somewhere...anywhere!! Image
Ah a Sunseeker yacht ! You are living where they make them I guess. Okay....

First I just want to give you a really warm welcome Sue Image Its good to have you with us at the Forum. We like new faces and we like folk to feel at home here. We are all in different situations but all understand what its like caring for someone, especially the emotional side of things. Its okay to offload here whenever you like !

I'm sure someone will be along presently who can relate a little more closely to what you are dealing with. Meanwhile you have to sit tight and just be content with having my very best wishes Image

Welcome Image

Welcome Sue Image
Hi and welcome.Not in same position as yourself,i actually care for parents,but i do know where you are coming from.I`m convinced i was meant to live on a white sand beach in the sun.I`m sure you will meet others in a similar position to yourself.Hope you find the Forum useful and fun. Image Image Image
Hiya and a warm welcome to the forum.


The nearest I'll ever get to a Sunseeker is admiring them from the Quay! I have a lovely 32 year old son with severe learning difficulties, brain damaged at birth, some things he can do normally, like drive a steam engine at the Blandford Steam Fair, with supervision. However he can't read, write, or do any mental arithmetic himself - he depends on others to help him with his money. When he was 16, he started boarding at the Sheiling School at Ringwood, until then he'd been a day pupil. Then he went to a farm college; 12 bed residential care home; then a smaller 3 bed home; then to a shared supported living house; now living alone with support, and attending day services. Each move arose as he became more independent. Our children will probably out live us, we cannot pretend we will live forever. Some health problems, coupled with no respite, meant I could no longer care full time, but he came home so regularly that he knew he was still very much loved and wanted, and I could give him lots of support. Sadly, I then developed a life threatening illness, requiring major surgery and it took at least a year to recuperate. The following year my husband died suddenly, and later the same year I had a head on smash which left me disabled. Friends have been very disapproving of our decision not to care full time, but I'm so glad I did, it would be impossible for me to care for him on my own, with my disability. Nothing could be worse for our children than having to move out of home because the last parent was ill or dead. Far better that they move out and develop a life of their own when we can support them. My son loves having a mum with more energy when he comes home, we can enjoy each other's company so much more. If possible, start the process with regular respite or holidays away from home, and then increase the frequency.