After a very hectic few days, things have now settled in some kind of routine. JD is in bed most of the time. Sometimes we get her out of bed around mid day and she sleeps in a chair in the living room. Around 3pm, we take her back to bed.
There is a lot of sleeping going on. 4 times a day nurses and carers come in to help change the bed and make sure JD is comfortable. The district nurse comes around 1pm to change the medication in the syringe. All in all, there is a massive support system available for me and JD.
I have to learn to let go when the carers are here. The are happy to have me help them with the care but they all keep encouraging me to go out and take some time for myself when they are here. I don’t feel that need so much but they all have the experience so perhaps I should listen to them.
Last night I had a bit of a panic attack about the whole dying thing. I was sitting on the bed next to JD and we were eating apple crumble. It was all quite pleasant and loving when suddenly it struck me that even this distorted idea of happiness would not last. I suddenly got all cold and felt my throat close up. I broke out into a sweat. If I had been alone, there would have been an almighty crying session but I was sitting with JD so I did not want to upset her.
I think it is obvious I am not at all prepared for life without JD. I can deal with the present, no matter what it is because she is still here. No matter how much our relationship has changed due to this evil disease, she is still there and I can still see the woman I love. When I look at her now, sitting in her chair, asleep, I can almost pretend she is perfectly healthy and that this is all a dream.