Hi my mum who is 75yrs old was diagnosed with psp just over a year ago but I think looking back she has had the symptoms for a number of years. Since diagnosis gp and neuro have said get care package in place before you hit crisis point well we didn't and at the beginning of August she declined dramatically where I had to physically push her up the stairs to get her to bed ( where she stayed for 2weeks ) she would eat sparingly , Incontinence or frequency of needing to wee became more of an issue ( up 7 times during the night and still the odd wet bed ) and I didn't know where to turn. I am her full time carer and I live with mum with my 2 children aged 3 & 9 it was a nightmare. I rang social services and once I had been directed to the correct team we have had visits from ot who are looking at putting a ramp and grab rails at the front door to the drive so I can get mum in and out of the house easier and the DN have arranaged hospital type bed with pressure mattress etc and luckily mum had been referred to our local hospice Loros for pain management and when I called to say she couldn't make the appointment and explained the dramatic downturn in her they managed to admit her for an assessment. As soon as she got there she changed and could walk with a frame and eat etc all of which she couldn't do at home ? While in the hospice she was assessed for CHC but we were not eligible. She has been home now for just over 4 weeks and things are settled a little apart from the bed wetting but we have had nothing from anyone i.e. No contact from hospice , DN or anyone is this normal ? How did you arrange a carer ( we have to pay for our own as mum has savings ) I do not know where to start with it all and how to get my mum to agree to having a carer . How often can our loved ones go into hospice for respite ? I have LPA but not the medical how do I get this ? Mum has already said to our GP she wants a DNR in place and I have this at home does this need to be with anyone else ?
I have lots of other questions and don't know what to do next .