Not quite a former carer

Hello, my 55 year old learning disabled son moved into supported living over 18 years ago and although I no longer have the day to day hands on caring role I am still a member of his wider support network and visit him twice a week. I accompany him to most of his hospital and other appointments along with his support staff. I don’t consider myself a “former carer” as I’m still involved in his care and support, just not 24/7 as I was when he lived at home. Are there any other members like me who are still actively involved in their loved ones lives even though they live elsewhere?
Mrs B

Hi Carolann! Absolutely in the same boat with my 37 year old son who has autism and associated learning disabilities. He lives about 1/4 mile away but we see him regularly and are currently involved in training delivery with some of his staff.

I’m also in the same position. After major cancer surgery in 2004 I was told never to care for anyone ever again. Social Services were aware of the situation, buy moved my son into supported living against my wishes when I was too ill to find any alternative. It’s been a nightmare ever since. Mum chose the same week as my surgery to fall over and break her leg which had a knee replacement already. Her leg was nearly amputated, but saved after a specially made ultra long replacement was specially made, but she was never the same again. The next 10 years were so difficult, son and mum having endless problems and each person involved with each of them kept telling me to do things I couldn’t. 18 months after the surgery my husband died, 3 months later I had a serious car accident, nearly killed, so I was hobbling round for 5 years with 2 walking sticks until I had two knee replacements. I was STILL expected to help mum and son!! I keep saying carers should have a right to retire that is respected, especially as the government won’t give us carers allowance as well as our pension!