I was fighting for weeks for anyone to acknowledge how sick my mum was after being discharged from hospital into an assessment bed. Personally i feel it was dictated by the fact they knew if they could avoid admitting she had a 'primary care need' as in shes was dying, they could get out of giving her CHC funding. After much shouting, crying , emailing, phoning the GP finally agreed ( be it under threat of having their license if they ignored my request for a full assessment) that she is EOL althoguh not actively dying ( I think they term actively dying as probably gone in the next few days weeks) and agreed to add her to the palliative care register. Once they do this, whether you have POA for health and welfare/deputyship order etc the GP is obliged to have a very candid discussion with the patients next of kin if the patient is not mentally able to answer these question etc, and ask you what the patient would want, how aggressively would you want them to sustain life, would you want them moved out of the environment they are in to a hospital emergency setting if they became seriously ill, or would you want it managed in the way of 'comfort care' in the setting they are in even if this means less of a chance they will survive the emergency. Obviously things like DNR are discussed, and also the level of preventative medication. I personally said I wanted her to be free of pain, and fed if and when she wanted not to force food or liquids if she showed no sign or wanting it or wake her to try her to force her to feed etc, I asked that if she got an infection uti or chest infection etc a oral course of anti biotics were ok but if that was not enough to ward off anything no IV meds and nature should be allowed to run its course. Obviously a DNR. My mother was brought back from the brink in Jan from bi lateral pneumonia and collapsed lung. Now she is in a nursing home, sleeping 20 hours out of 24 and the other 4 only awake to eat food she wouldnt like or eat under normal circumstances, having to be fed a constant supply of laxatives to make it leave her at the other end, sitting and laying in her own waste, hoisted out of bed into a chair to again fall asleep surrounded by noise and confusion she doesnt know or recognise.
I am just sorry they failed to have this discussion about appropriate meds whilst she was still in hospital as she would not have survived and not be in this terrible place.
Now at least because of them acknowledging how close to the end she was/is the next time hopefully she will finally be too weak and lack of intervention will at last give her some peace.
now its just a waiting game for me, everyday hoping for a sign things are again catching up with her, a cough, a rash, her breathing changing, not eating much or choking a little easily than the day before, I spend my life everyday hoping for something to tell me she's getting sick or weaker and soon it will be over for her ( and myself)
12 yrs since she first showed signs of frontal lobe 8 years since diagnosis and 6 yrs of being totally without diginity or speech or ability to communicate. Its been too long, and that makes me jealous of the ones who's fight is already over. I just want her final day so she can close her eyes and no longer be the victim this disease has made both of us.
