Thank you for your kind messages, It's all so strange, to go from being needed pretty much 24h a day some days to not needed at all and feeling completely lost some days, with nothing that needs doing immediately. I struggle with the fact that we reached the stage at the end where she had to be moved into the care home, where she spent her last 2 weeks. She always wanted to stay at home til the end so I feel guilty that this was not possible in the end. If only we knew it's only going to be two more weeks. For several months I've been worried that I might have cancer (found a lump) but was unable to make any appointments as I was not able to leave her on her own as she was very anxious and hallucinating so often someone had to be around all day and night even if not always necessary in the same room if she was dozing off. We've been asking social services for some extra help for moths, but the machine moves slowly (if at all) and it was not forthcoming. In the end she got an infection on a sore on her foot and it was very painful and she was not able to stand up or walk and needed 2 carers to change her in bed, etc. Agency providing the care visits said they don't have capacity to provide 2 carers and social worker found a care home and we took her there. I quickly booked an appointment to have myself checked out with the thought that if everything is ok I will apply to work in home to be near her ASAP. Got referral to the clinic very quickly and my appointment for a full range of tests was sorted for Monday in just over 2 weeks. Sadly she passed away on a Friday beforehand. It was all very quick and she did not suffer as far as we know (doctor certifying death said it was the kind of death many of us wish for their loved ones). My appointment went ok and after all the tests it was discovered it's not cancer, just ordinary cysts and nothing to worry about, And now I can't stop thinking that if I didn't find the wretched things in the first place and I wasn't so worried about myself I could have done more for her and she could have stayed at home til the end. On the other hand I do wonder if it was easier for her to let go while in the care home. She deteriorated so much in this last year, she was most of the time anxious and wanted to be with her mum, talked about dying a lot, but she was always scared of it. Sometimes when she was telling me how scared she is of what it's going to be like we would talk about who will be there to help her 'on the other side' - her parents, majority of her friends, etc and that always calmed her down. Then she would start worrying how much trouble it will be for us if she goes, telling me she does not want to leave me on my own and things like that. In the end we agreed that my OH will look after me when the time comes for a while and then when it's mu turn I will know she will be there and she promised to throw me a big party when I arrive and she seemed to be more settled. Perhaps not having to worry about all of us whilst in the home helped her let go.
Apologies for such long and convoluted thing. Maybe now I've finally written it down it won't be going through my head constantly backwards and forwards. We shall see....