I need non medical jargon help at the touch of a fingertip any time of day. Dad has adavanced end stage Parkinsons and we as a family have chosen to care for him at home. Most of the time its good with the help of a live in carer a care package and loads of space. However its often late at night when we are exhausted that the complex times often occur. Dad may experience hallucinations and confusion. we can tell by the frightened look on his face and his attempt to move away but because of his poor mobility he cant. You cant reason with him as the hallucinations are so real and although we cant see them we know the signs that they have appeared. We try to avoid calling out the GP or the ambulance as from experience they often know less about Parkinsons than we do as a family. It is complex but when it comes down to medication the knowledge of professionals unless they are working in the movement disorder world are limited to say the least. Is he dehydrated? if so what are the symptoms? does he have constipation? has he developed yet another urinary tract infection? has he aspirated? again what are the symptoms?. Our usual first port of call is our ever available PDNS who we cant text or call at any time. But when she isn’t available then what? every web site we seek out is full of medical jargon that is complex and hard to take on board when we are exhausted. when dad has a UTI he never has a temperature as the hypothalamus which reads the temperature is full of Parkinsons plaques and malfunctions so doesn’t read the temperature reliably. the same when he has a chest infection. He has limited cough reflex and no temperature and if there is no temperature most medical professions dismiss the idea of any infection being the underlying cause. Constipation causes confusion and is often caused itself by dehydration. But what are the symptoms. Its a guessing game. When the GP comes out he asked whether dad has had the flu jab? we panic? will this react against his PD medications? so we do what we always end up doing and texting the PDNS. If there was an accessible web site with bullet point question and answers then we would be more empowered to help our selves .
