Okay so I googled this today with a mixture of guilt and curiosity. In watching Anthony’s physical and mental abilities diminish over the last year, I have become increasingly concerned that (a) he will become very depressed; (b) his confusion will cause him anxiety; and (c) he will suffer physical pain.
Some of these things are already happening of course but, so far, he is not in physical pain and – remarkably, in my opinion, – is not depressed in any clinical sense. He is plagued by bouts of immobility and incontinence but we have both accepted these aspects of PD. Recently, however, the confusion of dementia has caused us both anxiety. For example, if he is home for the day, he will often talk to Ming and me even when we aren’t in the room. And sometimes, in the nursing home, he will think we are all home on the farm, and can’t understand where Ming and I are going when we leave him.
It is over seven years now since Antony’s PD diagnosis, and just over two years since he has lived in the nursing home. He is sad a lot of the time, mainly because he misses me, Ming and home, but mostly he is resigned and heroic in the way he has accepted now that he is too heavy for a single person to lift (in and out of bed etc.)
As much as possible, I have tried to inject a daily dose of joy into our equation but sometimes that isn’t enough and visiting him yesterday with my youngest brother and his youngest son, although wonderful, gutted me when we had to leave him, leaning on his walker, waving goodbye, with two nurses ready to take him back to his room.
How long will this go on? I catch myself wondering if sudden death would be better than this excruciatingly slow journey into an illness that has no cure, that ends with severe dementia, and that robs us of the energy we once had to adore each other. Of course the love is still there – maybe more than ever – but it is no longer a gleeful, adventurous, exciting love; it is more like a needy, obligatory, remembered love – not quite real in the here and now.
My grief and love for Anthony are in equal proportions and every single day it’s as if they draw straws to see which one will win – usually love, but not always….