jmgoyder

My tentative plan for today was to pick Ants up and take him out for lunch or for a drive. It was to be a bit of an experiment to see if I could do it and it filled me with dread because he is often so immobile that am scared that he will fall and I won’t be able to pick him up, as happened numerous times when he was still here at home.

I rang him to confirm and, as usual, I had to let the phone ring out twice before he managed to answer it. “Jules,” he said, “Jules, Jules, Jules, Jules….” Then there was silence even though he was still on the phone. I yelled into my own phone, “Ants! What’s wrong?” but he said nothing. Nothing. This terrified me. Was he upset?

So I hung up and dialled the nurses and told the one who answered the phone that something was wrong with Anthony. She said she would go and check. A few seconds later, I rang him again and this time he spoke a bit more and told me he had had a fall. He was a bit incoherent and confused except he did remember our lunch date. “I don’t think it’s a good idea now, Ants,” I said, and he agreed. He sounded quite shaken. I could hear the nurse in the background which was comforting.

Ants is falling more and more often because when he is mobile, he races and forgets his walker and, bang, down he goes. Last year, pre-nursing lodge, this kept happening and one of his worst falls happened when I went up to the local shop for something and begged him not to move from his chair. I was only gone 10 minutes but when I got back I discovered him lying prone and twisted in our little vegetable patch. He looked dead and I got a terrible fright. It took me nearly half an hour to get him up onto his feet and, though grazed and bleeding from his face and knees, he was otherwise uninjured. It then took another half an hour to get him back into the house because his legs weren’t working.

Mobility for people with Parkinson’s Disease is a strange and unpredictable thing. The typical leaning over posture doesn’t help with gravity. When Anthony is mobile, he almost runs; when he is immobile (which is most of the time now) he can hardly even move one foot after the other without assistance.

I think our days of going out to lunch are well and truly over, and were over long ago, but Anthony keeps hoping and I keep wishing.

And he keeps falling.

Parkinson’s Disease is different for every single person who has it. Its many and varied forms, and its hour-to-hour unpredictability, is maddening for both sufferer and carer.

Last night, at around 6pm, I received a phonecall from a nurse from the nursing lodge where Anthony now lives and she told me he wanted to talk to me. I was a bit alarmed that they had rung me. Once he was on the phone I could hear the dreadful fear of confusion in his voice and I kept reiterating that he was safe and at the lodge. But he kept saying he wasn’t there, he was somewhere else and wanted to come home. Luckily the nurse stuck around and she and I both reassured him.

Tonight I made my usual 7pm phonecall to say goodnight and Anthony was once again disorientated and not sure where he was so I said I would hang up and ring the nurses to tell them he was confused again. Anthony said,, “Jules, don’t tell them I’m crazy!” Anyway, it all worked out with a nurse by his side when I rang him back, but he still didn’t quite know where he was.

My love for him has become like blood; every time he bleeds, so do I. We had such a beautiful, turbulent, fantastic love and now it whimpers or howls – unbearable.

I will go in at my usual time of 11am tomorrow but first I have to swallow this horrible sorrow, put a grin on my face and buy chocolates.

Parkinson’s Disease is different for every single person who has it. Its many and varied forms,and its hour-to-hour unpredictability, is maddening for both sufferer and carer.