Me: I love you so much, Ants.
Anthony: I wonder sometimes.
Me: What do you mean?
Anthony: The way you treat me.
Anthony: Like a bag of old rags sometimes. Look at yourself in the mirror!
Me: I don’t understand, Ants!
Anthony: It’s all right – I forgive you.
Me: Forgive me for what? I am doing my best! Why are you being so horrible to me?
Anthony: I just want to go home and see Mum!
Me: But she’s fine, Ants!
Anthony: This has been boiling up for ages.
Me: I don’t understand.
Anthony: Yes you do, and you only barely put up with me!
The above was an uncharacteristically angry and semi-lucid conversation during which I got my notebook out to record things exactly as they were said.
A marital row, I guess – no big deal. Anthony’s sudden mistrust and cynicism about me yesterday carried itself into today but was less acute. I hope this angry thing won’t last long.
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Me: Why do you look so surprised?
Anthony: Well, I was going up the passageway and I saw her. It was extraordinary.
Me: Who did you see?
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One of the best things about my relationship with Anthony is that we are usually on the same page when it comes to humour, AND we are both able to laugh at ourselves. Today, I was feeding him his lunch and this was our conversation.
Me: You like this chocolate mousse stuff don’t you?
Anthony: I didn’t always.
Me: Well you obviously do now – you’re like some sort of lizard with your tongue sticking out for every mouthful.
Me: Okay well I have to go to work now (volunteer job) so is there anything you want?
Anthony: Your hair ….
Me: OMG yes, yes, yes, my hair is due for a trim – anything else?
Anthony: It’s a matter of urgency.
Me: Urgency! Are you kidding? My hair? How dare you!
Anthony: But your face is beautiful.
Me: Too late for that kind of rubbish, Ants – you’ve done your dash!
Laughter … the most wonderful, magical thing in the world.
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It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.
The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….
And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.
Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.
No dress rehearsal prepares anybody for the death of a loved one.
I am on the brink of facilitating a couple of carer support meetings, so I thought this would be a good place to air some of my thoughts beforehand.
Carers/care-givers – who care for and/or about loved ones who suffer from diseases like Dementia – are, according to the latest research findings, amongst the loneliest people in western society. The loneliest people are, of course, those with Dementia, especially those in care, like my husband, Anthony.
I have always loved being alone and am comfortable with solitariness. I am not naturally gregarious but I do enjoy the company of friends. Until recently, I have never actually felt lonely, but now I do – acutely. I miss Anthony being home with me, with Ming, milking the cows, chopping firewood, lighting the Aga, cooking steak on the barbecue, washing the car, watching ‘The Bill’, snuggling up in the big bed with toddler Ming in the middle.
But these memories are now nearly two decades old. More recent memories are stark with the years of frustration, avoidance, anger, sorrow, exhaustion – mine mostly. Having to quit my job in order to take my husband to the toilet, to stop him from falling over, to hide the car keys so he wouldn’t try to drive, to turn taps off that he’d left running, to open the vegemite jar when he couldn’t….
For awhile Ants and I hid what was going on from little Ming but it wasn’t long before Ming had to help out. I became so exhausted that I ended up in hospital and after that Ming and I shared the night shifts with Anthony.
And then – years later – the nursing home decision, the subsequent paradox of guilt and relief and now – more years later – the ongoing grief and loneliness. I miss him so much!
I am very glad to have the opportunity to facilitate these carer support groups because I have developed a few ways of coping better than I used to. Until I became involved, as a volunteer, with these groups, I had no idea that there might be some support for carers out there somewhere. If I can be a part of this, I will be so glad!
The other day a couple of friends came into the nursing home and Ming and I happened to be there too.
After the usual greetings, banter and catch-up conversations, I told these lovely visitors about how frightening it was a few weeks ago when Anthony lost consciousness on two occasions.
As I was describing all of this to our visitors, in my usual dramatic way, I suddenly realised that Ants was listening intently.
Me: Sorry, Ants, but it totally freaked me out when you lost consciousness.
Anthony: What rubbish!
Me: Sorry I talked about you in front of you, Ants….
Anthony: It was quite interesting actually.
Today Anthony was perky, lucid, vocal and even sarcastic!
I had picked a double camellia bloom from our favourite tree but forgot to take a photo (sorry, flower-lovers!)
Well, he loved it but its stem was too short so one of the carers brought a bowl in so we could somehow keep it alive until tomorrow. There were many admiring exclamations from staff and I felt quite the gardener – ha! On this first day of Spring, there will be many more blooms and I will take them in every day because it gives Anthony such delight.
My mother, Meg, visited this afternoon and she, too, admired the double bloom.
Meg: This is a potentially prize-winning flower, Anthony!
Me: Ants, it’s my tree – remember? I paid a small fortune for that tree!
Anthony: Yes, but I nurtured and loved it.
Meg: I think God created it but did you have a hand in it too?
Anthony (smiling): Yes.
Me: I’m the one with the foresight to buy a rare tree!
Anthony is silent.
Me: Have I upset you, Ants?
Anthony: No, but you are irritating me.
A lot of banter followed this, then my mother went home. I put the food channel on for Ants and, as usual, pretended to go shopping for chocolate or blue cheese, saying I would be back later.
So, after a very panicky few weeks where I thought Anthony was on the brink of death, he has now come back to life it would seem. Surreal! How does this happen? It is beautifully scary but so disconcerting.
The last thing he said to me as I left this afternoon was “You are such a galah, Jules!”
Yep, I agree!
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