hello everyone, never really poates before but now feel i have to get some advice. my dad has vascular parkinsons, and when i came across this site i felt i was reading a text book on my dad. i hve convinced myself he has psp and almost convinced my family so here goes..... he has been bed and chair bound for 2 yrs now, hes recently been in hospital with aspirated pheumonia. he is also diabetic and had a hyp, turns out because he isnt eating he doesnt need insulin injections anymore. So he looks awfull, doesnt eat much, cant swallow, chokes alot and is now on pureed foods and thickened water. this time round at hospital i thought this was the end, i asked a sister what she thought, she said i could be right and that his skin is already showing signs of deterioration. anyway he is back home, still choking, cant speak and me and my brothers are beside ourselves feeling he just isnt getting the care he should be. even if he hasnt got psp, he is at the end in my opionion and we would like pallative care, spoe to DN and she said go to doctor with all my thought, another DN said no, pallative care is only for people close to death ( which isnt true) and chronic illness ( is this not chronic enough ?? ) so frustrated and sad :(......i just know hes going to get worse, i really dont know what to do........he has so many other things like pressure sores, has been catherised for last 2 yrs, incontinent both ways, just a mess...but we keep going, we love him, and im angry that he goes into hospital and i feel they know nothing, Twice now his notes have said addmitted with vascular dementia as well as vascular parkinsonism....we didnt know he had both??? its been bout 5 yrs now. any advice would be appreciated xx
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