Reply to talk to me about late stage Parkinsons

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[quote=Anonymous]We are in a similar position with my father who also has atypical Parkinsonism. His first noticeable symptoms were early 2020. He recently began hospice care and is confined to bed, mostly unable to move and with cognitive decline. In the years between he fell often. He has paid care about 40 hours per week. It’s not enough (12 hrs/day 7 days/week would probably be ok). The decline has accelerated the past few months, so we are attempting to keep him home, but it’s challenging. My mother is exhausted. I’m on-call to help evenings and weekends but I’m not available 100%.

I tried to get his neurologist to give a rough idea of the time he has left. Given how much he declined since his last appointment and the severity of his symptoms, he approved hospice, so obviously feels time is limited. But prior to that he was reluctant to give a timeline, especially since my father was so healthy and active before. Sorry that you are going through this. These are terrible diseases and fairly rare so a bit hard to predict and plan for care accordingly. [/quote]

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