Difficult days! My dad 87 is primary carer for my mum 80, she has FTL dementia and has been steadily declining since 2017, we reached crisis point last Wednesday when the Dr had to do a home visit, called for an ambulance at 7pm because he suspected a chest infection. Dad stayed up to wait for the ambulance which arrived at 8 am the next morning. He has had no help to date. My sister and I who both live 2.5 hours away in opposite directions have been on hand when needed. So mum has been in hospital since Thursday and a ‘care plan’ is being put in place. The chest infection has been treated and as far as the hospital is concerned she is healthy enough for discharge but hey won’t do this until the care plan is in place... no problem so far, quite relieved actually...however I have no idea who is putting the plan together or who to speak to. I jus feel that they have fallen through the gaps! We’ve had no support since diagnosis and it was only a chance conversation which introduced dad to a wonderful volunteer from the society. Anyone know who I should be speaking to or any advice? I was under the impression that we should be involved in the discussion for the care plan but so far we have no idea where we are and it’s all been behind closed doors! .....I’m still furious that mum had to lie in her own faeces and urine for 13 hours!