One of the worst things about Parkinson’s disease, especially in its final stages, is that no matter how diligent you, and other carers, and the sufferer, are with the timing of the medications (which is vital), what works well one day might not work the next day, or hour, or minute.
When I arranged for Anthony to be taxied to and from a restaurant the other day, in a wheelchair taxi, it was a great success except about an hour too long. He became exhausted.
Today I arranged for Anthony to be taxied to and from the farm but made sure it was less hours than the previous time. So he arrived at 11.30am and he and Ming sat out the front in the sunshine and it was great hearing them chat. Then I served a lunch of scrambled eggs (Anthony’s favourite except for fish mornay!) Then he got too hot in the sun so I got him back into the wheelchair and pushed it into the shade.
By this time (about an hour into the visit) Anthony had become very slumped and silent and our conversation was limited to my chatter with little response; he just wasn’t ‘with it’ and looked awful, you know, really sick. So, I rang the taxi people and asked for the wheelchair taxi to come earlier, then I rang the nursing lodge to tell them and that was fine.
Well, as soon as I had done that, he came good (‘come good’ is an Australianism for rallying I think). He got off the wheelchair and used his walking stick to shuffle around the garden a bit, went to the loo without needing much help and walked outside the front again, sat down and was suddenly in the mood for conversation. By this time it was around 2pm and I was wishing I hadn’t asked the taxi to come early because Ants would have lasted until the original time of 3pm
So when the taxi arrived, Anthony said, “Not already?” and looked so crestfallen that I could hardly bear it and kept saying to him, as I was wheelchairing him to the taxi, “I’m sorry – I’m sorry, you were all slumped – how was I supposed to know you would suddenly come good?”
After Ming I and I waved him off, I cried for my bad timing and Ming said, “When will you learn, Mum? It’s not your fault.”
By now, Ants will be back at the nursing lodge. And, until I get the taxi vouchers next Monday, this ‘genius’ taxi idea has so far cost over $200 and what for? The sadness far exceeded the joy today. Arghh!
Oh yeah, and the stupid geese didn’t do any frolicking while Anthony was here, and I didn’t get the roses pruned and I just tried to ring Ants and his phone is off again. On the other hand, weather-wise, it has been an extraordinarily beautiful sunny day, the phone hasn’t rung (I am not phoney), and Ming just went off to milk the cows happily.
But my main point is that the unpredictability of Parkinson’s disease can do your head in – whether you are the sufferer or the carer – and it is, therefore extremely difficult to ‘go with the flow’. I know I’ve posted the photo below before; this is Anthony nearly two years ago. He doesn’t look like this any more.
jmgoyder 