DON'T FEEL YOU NEED TO READ THIS AS IT HAS TURNED INTO A VERY LONG RANT AND IS MORE ABOUT ME GETTING OUT HOW I AM FEELING SO THAT I CAN TRY AND MAKE SENSE OF WHAT IS HAPPENING.
We had a slightly better night last night as mum settled more quickly after each visit to the loo, 6 in total. She has been very tired all day but is so anxious and agitated that she can't stay in the same place for more than 10 minutes.
Tony came round and spoke to mum with a consultant. Between them they decided that mum would have a catheter and that she would go back on MST keep taking the seroxat and diazepam and now lorazepam! My question will she be able to speak to me? Her speech today was already slow and she couldn't always say what she wanted to say. Tony explained that the important thing at the moment was to make mum comfortable so that she could get back in a routine of a good nights sleep but I can't help thinking they're doping her up to help me rather than mum.
Mums feet and, I think, her hands have begun to swell. The district nurse indicated that she didn't think mum had long looking at mums feet? How does she know that? Her heart is in the right place but she seems a bit like the grim reaper. She said things like 'I think this is it!' and kept asking mum why she was anxious and what mum thought was going to happen. Mum said she hoped she would get better!
I still can't fathom whether mum is just in denial or whether she hasn't actually realised the seriousness of her present condition. I didn't like the way the district nurse spoke about end of life drugs etc. in front of mum but there was nothing I could do. Tony was there and he just ignored that particular comment and told mum he didn't think she was comfortable and that the important thing was for her to be as comfortable as possible. Mum agreed, she'd agree with anything Tony said to be honest, she loves him.
Tony didn't answer my question about whether mum would be able to talk to me. He said let's just get her comfortable and then look at things again tomorrow after a good nights sleep. He is coming back in the morning. He did tell me that mum was no longer on the hospice list because it was not what mum wanted. He asked her again if there was a bed at the hospice would she go and she gave an emphatic NO! So it seems that's that!
The carers are continuing to come 7am-8am and 7pm-8pm but won't transfer mum from chair to bed etc. because the hoist hasn't arrived so I'm still having to do it. Someone from the hospice is coming on Wednesday night at 9pm until 7am so that I can sleep but, again, there seems to be an issue with them being able to get mum up or turn her in bed. The hospice said she would, the district nurse said she had been told she wouldn't. She also said she had been in touch with Marie Curie to see if they could offer any nights but again said they wouldn't get mum up so would waken me. She said they might ring me today but they haven't as yet.
Tomorrow I'm going to try to speak to Tony on his own and see what he thinks in terms of prognosis. This is so new to me and I don't mind saying I'm scared stiff. I know mum is going to die, there I've said it! One minute I wish it would happen quickly and put her out of her obvious misery the next I'm praying that she could just be herself again for a while so that we can get back our special mum-daughter relationship that we have always had until the past week when we have become patient-carer and where she is getting annoyed at me and I am getting annoyed with her. We've always got on so well and today she told Tony I'm always on at her. She even said I was shouting at her! Am I shouting at her? At 3am in the morning when she is asking to go to the loo for the 6th time in 2 hours and I can't get her to support any of her weight and move her feet so that I think I'm going to hurt or even drop her I suppose I am and I feel so guilty. I don't mean to get angry but know that the alternative would be for me to dissolve in tears and I don't want to do that as I'm scared I won't be able to stop. I am almost 50 years of age and at the moment I feel like a child! I don't suppose it matters how old you are your mum is always your mum and you are always her little girl!
That's enough for tonight as I feel emotionally drained now. Mum is sound asleep and I'm praying that she gets a settled night.
