We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.
Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!
Anthony: You’re not so bad yourself.
Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!
Anthony: Well I wouldn’t go that far, Jules.
Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.
But this afternoon, we had a completely different kind of conversation:
Anthony: Okay, let’s go.
Anthony: I want to go home to see Mum.
Me: But she isn’t there, Ants.
Anthony: Where is she?
Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).
Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]
Me: I think they’ve gone out for lunch.
Anthony: Well we can join them and then go to the farm.
Me [grasping for straws]: But what if the doctor comes?
Anthony: You always do this.
At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.
While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….
Anthony: Hey, hey [squeezing my hand harder]
Me [looking at him in mock annoyance]: What now!
Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?
Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.
The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.
Anthony: Thank you for telling me, Jules.
Me: Are you okay, Ants?
Anthony: Not really.
Me: What can I do?
Anthony: Can you just take me to the farm – my farm?
Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.
Anthony: You always say tomorrow.
Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!
Anthony: But I’m getting better every day. Why don’t you believe me?
Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?
Anthony: Don’t cry, Jules….
It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.
On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.