First and foremost mums condition has rapidly deteriorated. Over the past week she has gone from shaky and not much activity, to bed bound. This morning has been the worst to date, with her being completely unable to get herself out of bed. The distress levels have now risen to an all time high with her. I have only ever seen her this distressed before when she has been very bad, and ambulance crews have been trying to get her to comply. This morning the carer had to request I help mum out of bed so she could clean her and change the bed. Even though it was me moving her, someone she has trusted for years to lift and carry her when required, now she becomes very distressed, and tried to fight me a bit. She did the same yesterday after becoming stuck on the bed whilst trying to get in it.
She is even reluctant to get into the wheelchair for a cigarette now, which is a shocker in itself.
The biggest shock was on Tuesday when the rapid decline started properly. I made her a drink, and on giving it to her she said "I can't put it off any longer". Not understanding what she meant, I asked, and she explained that she felt it was time to go into hospital or the hospice now. Hearing that, I guess some would just go with it, but I wanted and still want to be sure she wants this for the right reasons. I asked her again on Wednesday WHY she felt she needed to go in, and she replied "because I'm no use to anyone like this". Which just makes matters even harder really. If she would rather be at home, a second carer can be added, extra visits can be made and lots of other things to facilitate her staying at home. The biggest problem would be the round the care attention, but I'm sure between me and my sister that could be done.
On the flip side, there is the dignity part too. While she may not want to be in a hospice for her final weeks, there is also the matter of maintaining her dignity. Being incontinent, and unable to move is very distressing for her now, so part of the request to go into the hospice will be to keep some of that a little private too, which I understand and respect.
So I have planned for the doctor to make a home call today, to check mum over, and to discuss what happens next. Should care at home increase, or should she really have around the clock care in a facility now. A large part of me thinks the latter. But that is both hers and his decisions to make, and depends on if St Christophers are able to take her in. Even in the state she is in, she is still reluctant to go into hospital, Lewisham at least!
As for me, I'm desperately trying to keep my head above water here. Finally starting to catch up with bills, council tax and more, as well as make applications to the benefits team for help with the rent while I'm on half pay. I would say I have been stressed recently, but I at least feel quite "at ease" shall we say, with the whole matter. I have to admit I find it quite strange that I am feeling like this at such a stage. Maybe I have gone numb again, or maybe my batteries have had time to charge up a bit, either way its a blessing that I can do the bits that I'm doing without too much stress. How long that will last however I don't know.
So this afternoon will be a turning point but in which direction as of yet we have no idea. Mums health today also seems on the decline. Very vocal with cries and moans, and struggling to cough etc, so maybe the doctor will suggest hospital, or maybe not. So much to guess about, but it will all be decided soon enough.
The only thing I have noticed about myself in all this is being tired. Whenever I lay down or even just sit on the bed, my body just wants to sleep and shut down for a while. Preserving energy, or avoiding dealing with it all? I don't know the answer to that, but while its all working out ok, I won't try and change my routine. If my body says sleep, and I have time to, I will.
What's keeping me sane at the moment is seeing and spending time with other people, keeping myself distracted from dwelling on things too much, although I still manage to bring all of this into any conversation I have. But that's me :op
So that's a very long, yet very basic catch-up on how things are.
Will update soon, as and when things change and are decided.
Regards
Michael
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