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I can always totally agree with all you say being in such a similar situation . My mum has terminal restlessness she still gets distressed but as she still eats a tiny amount staff are reluctant to sedate her . It’s torture . She is a skeleton what a lot of people don’t realise is that just because people are eating a tiny amount they are cachexiac and nothing absorbs . Mum eats then often chocks needs suctioning . She has skin tears and bruises where skin is so thin. She didn’t have the 3 re booster I Said no but I’m waiting for a call this week about 4th and have given up the fight now if they can find some skin to inject into it then it will be bruised and sore . mum has no qol so covid won’t save her from any moment of quality . It’s cruel demoralising and undignified . I say a quiet prayer each day for her to join her family in a kinder place . her Face is contorted constantly in the same position . I had to ask for sedation last time I visited I was told she will get over it soon which i didn’t find acceptable . Could like you write a book and intend to one dayVery true Sylvia. I was thinking of it more from the prospective of mum being distressed by having the injection as there's no muscle left on her as she's been bed bound for 9 months now and has lost a lot of weight in that time (over 3 stone).
Thank you so much @GillP that's very kind of you. I treated myself to a full body massage & mini facial this afternoon, it was a blissful 90 minutes and I completely forgot about everything that's going on, which was lovely.
I was told last year by mum's social worker that only one of her patients had received CHC funding during the whole year, so I wasn't surprised when mum was only awarded FNC, I was advised that as mum wasn't violent or disruptive she would be considered as mainly requiring social care, which CHC won't fund. The subsequent Fast Track application was also turned down as they considered mum to be palliative stable at Christmas.
I'm so sorry to hear that @15moterbike, it must be so distressing for you. At least my mum only shows signs of distress when they move her or try to feed her, the rest of the time she is asleep. I tell her it's time for her to let go when I'm visiting alone but I can't bring myself to say anything like that when I'm with my brother. As my brother says, she's a tough old bird and at this rate will reach her 96th birthday in September!!!
Thanks for the advice, I must admit I haven't felt emotionally strong enough to appeal, plus I haven't been able to see any of the paperwork either, despite requesting this from the CHC several times. You're right, they system relies on relatives being too distressed by the situation to fight for what they believe their relative is entitled to.
I'm sorry you are having to sell her house to pay for her care. Just visited mum all skin and bones coughing sounds chesty but still accepting some food .the staff really care for her one care assistant said she feels mum has a qol as she is still here and shouts when she has pad changed. I said she hasn't a moment of quality it's torture but I couldn't do there job and have decided today I can't deal with visiting and hearing all this again so yet again I give mum permission to ho and see dad etc and will keep praying for this to end . I can't see how see csn react any different to the nursing staff than me . She has no idea who I am heartbreakimg
@15moterbike yes it is heartbreaking to see your mum like that, especially when she doesn't know who you are any more. I'm sure deep down she recognises your voice. My brother & I visit together, I tend to hold mum's hand and we chat with each other so hopefully mum knows we are there with her on some level even if she doesn't show it.
