My first post was filled with anger and frustration having just received my wife's diagnosis of PSP with the consultant giving her a 2 to 6 month prognosis due to her rapid deterioration where she went from being able to walk around a supermarket one week with her unable to stand the next and then being hospitalised. Well, we have jumped the 6 month hurdle but she is getting worse. Her ability to communicate is limited to the odd word and grunt (varying pitch and intonation which I am now able to interpret depending on what I have done to annoy her)! She needs constant supervision but can be left in safe places (her rising recliner chair or a low armchair from which I know she cannot try to escape). She has no control over her bladder and uses pads. She is unbelievably stiff and has a powerful grip and an obsession with grabbing anything in reach. I move and turn her using the "turn assist" with safety belt against purist OT advice because part of her stiffness is her inability to sit back down easily so I figure that the least times she has to do this minimises the force needed to get her to sit. We have just begun the CHC funding marathon and are being helped by our district Matron and have received notification that it is "In for assessment by a Health Professional" (funny that but I thought a district Matron was a health professional)! I have to ask what the purpose of this bureaucratic nightmare is other than to provide obstacles to slow down the funding process. There is no incentive for the local authority to say that the level of care is above that which they can provide if the patient is funding their care themselves. The NHS is unlikely to volunteer to pay for this! We have had excellent support from Marie Curie with normally two night visits per week enabling me to get some rest and Hospicecare are counselling us with facing up to the "inevitable" difficult questions such as funeral arrangements. Oh well onwards and upwards, must get another load of washing on, get breakfast, shower and hair wash my lovely and then sit down together to listen to the Archers. A carers lot is not a happy one!!