I really thought things would be that much better when mum came home but, sadly, I was wrong. I thought I was strong and that I would cope much better with her here but now I'm asking 'Can I cope?' I suppose part of the problem is that at the moment there is no care package in place and although I'm doing my best, lack of sleep and a well of emotions are rendering me useless in this crisis. At 1am this morning I was crying my eyes out as I made my mum a cuppa in the kitchen whilst she watched CSI Miami! Fortunately she didn't see me.
It was 2am before she finally got into bed and stayed there. Most of the day she went from her chair to her wheelchair to her bed to her commode and so on. She didn't really settle for more than 15 minutes. She is extremely shaky and Nicola and Tony both felt she was agitated. I expressed concern at my mum being taken off of peroxetine in the hospital and asked should these not have been gradually reduced. These are an anti-depressent that were given to mum some years ago for anxiety and which she has continued to take 1 a day from then. For them suddenly to be stopped by the hospital, even if they thought they may be having an impact on her sodium levels, may well have caused her problems with extreme anxiety and agitation. Having just been told her cancer is now in her liver and there is no more that can be done except keep her confortable and treat her symptoms would be good cause for being anxious.
Tony came today and has rung me tonight to say he has spokent to various colleagues and has done a considerable amount of research into the tremors mum has and the anxiety she is so obviously experiencing. He called the GP and asked for the peroxetine to be prescribed again so we should get them tomorrow. He has also said she can have 4mg of diazepam 3 times a day and if she still doesn't settle I've to give her 2.5ml of oramorph with a view to breaking the cycle and allowing her to settle. He told me not to give her the whole bottle and then added to save a spoonful for myself! He is going to be a Godsend, I just know it. He was going to bring a consultant with him today but it wasn't possible so he told me tonight they're coming on Monday afternoon.
The social worker came today and from Saturday two carers will come in from 7am until 8am and at 7pm in the evening. We will have to pay for this but don't know yet how much. Seemingly it depends on mums pension and her savings. Whatever the cost I'll pay it because I've realised just how valuable it will be for me to have an hour to myself at the start of the day and half an hour in the evening where I can disappear next door and have a cuppa with Gillian and the kids.
The lady from the hospice said she'd ring me tomorrow to tell me what they will offer and I'm hoping to get two nights 9pm until 7am and maybe a couple of hours during the day. Nicola, the district nurse, is going to contact Marie Curie to see whether they can also offer something so maybe by next week things will become more manageable.
Mums mood, energy, mobility and tremors are all extremely variable. There were points today when she was in quite good form but at others she was distant, vague, shaking from head to toe and holding her body tense, totally unable to relax. I've asked her if she is anxious and she says she doesn't know. Sometimes when I ask her a question she either can't answer or chooses not to. When I say 'mum answer me' she says 'I'm thinking' but that thinking can go on for ages. Gillian spoke to her tonight and she didn't answer, it's as if she is trying to process things but her brain is working too slow.
At about 7.30pm tonight my mums eyes were shutting and Gillian and I got her into bed. She is now fast asleep. I will have to wake her at 9pm to give her meds for low sodium and I'm praying that she'll settle back to sleep. She only had 4 and a half hours of sleep last night and hasn't had a nap today so she is absolutely shattered.
So I find myself asking 'Can I cope?' My answer? I have to! Tomorrow is another day, the weather forecast is good and if mum's up to it I'll take her for a wee walk mid morning as we are both going stir crazy, having not been out of the house since 10am on Tuesday. My aunt and uncle should be here around lunch time so that will give me support until everything kicks in and we get a routine. I will cope!!
