Hi everyone,
This is probably going to be a long one and my brain is fried so thank you in advance for persevering with me.
We are based in the UK. I have more or less taken on a coordinating role in this as I am a healthcare professional. However, this side of things is very new to me, and I would appreciate any help or advice from folks who may have experience or have gone through something like this.
Until a month ago, my grandmother had Stage 3 Parkinson’s Disease. She needed a carer once a day for washing/dressing and help for cleaning and shopping etc., but was otherwise independent (fiercely so - she was a very strong woman).
A hospital admission for a fall, a failed discharge and a 3 week hospital stay later, she has rapidly deteriorated to Stage 5 - she is bed-bound, doubly incontinent and requires round the clock care. She cannot reposition herself. She is very frail, and also has CKD5 and diabetes.
After discussing her wishes at length, she has expressed wish to be allowed to die comfortably and is very explicit that she wants this to be at home. She does not want to go into residential care and has declined any further interventions.
The problem we are now having is arranging appropriate care for her. She lives with my grandfather, who is also dependent on care and is unable to help. The original agreement for her to remain at home following hospital discharge was for her to have a 3x a day care package plus an overnight carer. She is (understandably) struggling to adjust to having become fully dependent, and after one night, withdrew consent for overnight carers due to monetary concerns and wanting to be left alone overnight. This is, of course, woefully inadequate, for a myriad of reasons. We have thankfully been able to talk her around to reinstating this.
The money remains an issue though. Her care is provided by micro-providers, who are brilliant, but it is very costly. They are threatening to withdraw care again. Following this, we’ve had to have a frank discussion with them that if they withdraw it, it is likely that she will be forcibly removed from the home for safeguarding concerns.
As a family, all we want is for her wishes to be met - to die with dignity, peacefully and comfortably in her own home and receive the appropriate care to make that happen, while also mitigating any external stressors I.e. finances if possible. I am wondering if you guys may have any recommendations for services that I can contact that are able to assist with care without the enormous cost, to remove their monetary concerns? Or even just support services? I’ve arranged a GP home visit tomorrow to discuss outstanding concerns and ongoing care, and was wondering if I should enquire about Marie Curie, for example. But if there’s anything else I can do, I would like to explore it.
Many thanks for reading and I can answer questions if extra info is needed. 
