I am new to this group and thank you for letting me join. I am happily married and have two grown up daughters. I became a full time carer and surrogate mum to my youngest sister Jenny five and a half years ago. The reason I am here, is that on 12th May, this year my much loved little sister Jenny, (Jenny Wren) had a catastrophic seizure. Jenny was 53. She had Down syndrome by coincidence and she was a adult child. We knew things were changing, but we thought it was a mixture of the grieving process as in recent months we had lost both our parents and over the last six years, we had been through a lot as a family, but we thought the changes were that Jenny was about to embark on her own journey and she was being assessed for dementia. However, on her birthday, she had what we thought was a seizure (my husband and I only witnessed the aftermath), she came through ok. Then 25th April, we saw it for ourselves and ended up in hospital, she had fractured her collar bone too. The following week, we think she had a silent seizure and seemed ok but never left my side. Although she was hallucinating, mainly at night, everything seemed ok for a week, although she was still clingy. We tried to get her to go back to her normal routine and things had started to get back to normal. We had been out on a couple of trips, even enjoying an afternoon at the beach. Come Friday, she went out with her Support Worker, came home singing, we were teasing her and she was laughing. At six o'clock pm, GMT I looked over at her and signed "I love you", she put her thumbs up and smiled. I looked away for a split second and then everything was then in slow motion and when I looked again, she yelled out and started shaking. I have been told, by the time she hit the floor, she had already gone. My husband gave CPR whilst we waited for the paramedics. But I knew that after a short time, her beautiful little brain would have suffered too much. She did eventually start breathing on her own, but only after twenty seven minutes. We had been warned of what could be. Four long days later after praying and hoping that our beautiful girl would show a little miracle and come back to us, we were told it was time to let go. It took ninety short seconds, for her beautiful heart to stop beating We have yet to have the funeral, that is next Friday. This Friday, three weeks on and we are both in turmoil. Still living on "if's, buts and if only's" despite the reassurances that not even the most professional and dedicated Medical team could have saved her. Jenny was like a daughter to me. I had fallen in love with her, from the first time I saw her all those years ago. We had a special bond and some of me has died with her. I don't know how to move on or what to do?
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