wings and things

Dementia dialogues 23

Me: Daaaarling!

Anthony: Jules!

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?

Anthony: You.




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.

Anthony: Delicious.

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.








Dress rehearsal

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.



Caring for the carer

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!

Anthony: Yes.

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!






Last rites

Today, my best friend, Tony, an Anglican priest, came all the way down from Perth to pray for Anthony, Ming and me and it was beautiful. Ants was up and in his armchair, and awake, but not aware (I hope!) that it was a last rites situation. Tony read prayers and Ming and I also read bits and pieces from the Anglican prayer book – passages that pertained to our situation. Then Tony annointed Anthony with the holy oil that has been sitting on the kitchen mantle piece for years ever since a nun friend blessed him years ago when he was still living at home. Sister Romanus kept her holy oil in one of those now old-fashioned camera film containers and, after so long, it had turned into a putty consistency.

After the formalities, Tony held Anthony’s hand and said his own personal prayer for all of us. While he was doing this, Ming and I also put our hands on Ants. We were all emotional but not to the point of crying, whereas Ants seemed a bit nonplussed but admitted that he understood more than he let on.This was not in reference to the prayers but to our conversation later about his torana! I am curious to find out tomorrow if he remembers today’s experience.

Ming and I will never forget today and, for me, the peacefulness that Tony instilled has slowed my anxious heartbeat into a normal thrum and my tears are less wretched. I don’t feel panicked any more. Anthony is probably going to scare the hell out of me more and more often with these TIAs but the joy of seeing him awake surpasses that. The fact that he appears to be pain-free is a blessing.

Thank you, Tony, for today.







Going with the flow ….

Most Dementia care advocates/experts, and organisations, seem to agree now that ‘going with the flow’ is a better, kinder way of responding to people with Dementia. For example, when Anthony asks me to find the chainsaw so he can cut wood for the fireplace, I say yes, of course; and when Anthony asked Ming yesterday to move the calves to a different paddock, Ming said yes, of course.

I was really proud of Ming yesterday because when he came home (we’d just missed each other at the nursing home), he said that Anthony mistook him for a nephew and Ming had to say, “It’s me, Dad – Ming, your son.” I guess that’s an example of not going with the flow but Ming did it gently and acknowledged to me that he and his cousin do look alike. I was proud of him for not being upset and for being so gentle in reminding Anthony who he was. I was also proud of him for agreeing to move the imagined calves that Ants often sees in the grassed area outside his window.

Going with the flow in terms of what Anthony says, or tries to say, is easy for me. I am getting better at mind-reading when he is stumped for words, when sentences are impossible. I know him so well, who he was, and who he is now with the Dementia, so I know how to reassure him that his mother and deceased siblings are fine, that the dairy is functioning, that there is plenty of money in the bank, that Ming is growing up fast (Ants often thinks Ming is still an infant).

But going with the flow for me, personally, has recently become extremely difficult and traumatic due to Anthony’s sudden deterioration a couple of weeks ago with the dysphagia and TIAs. My grief was acute because I thought he was about to die. Then, when he didn’t die, my emotions became all mangled and I became consumed with anxiety and uncertainty.

I spoke with my fantastic psychologist this morning about how frustrated and exhausted I was with not knowing when Anthony would die. Of course I already realise that, despite him being in the last stages of everything now, it could still be a long time.  She suggested just focussing on each day as it comes, not having any expectations, and re-finding my own identity, the latter of which was something my mother also said to me the other day.

As someone about to facilitate carer support groups, I felt the need to figure some of this stuff out but that’s where the ‘going with the flow’ idea caught me as I fell. There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.

I have been feeling so weak and distraught lately – even disorientated – but the volunteering jobs have been like a gift! Going with the flow….



Rollercoaster 2

I will soon be facilitating a carer support group so I guess the last couple of weeks will help. The trauma of seeing Anthony unconscious, then the joy of seeing him okay again, over and over again, especially lately, has absolutely done my head in.

Today, we had a multitude of visitors and it was wonderful – especially when my great-nephew sat on Anthony’s knee! And yet yesterday, Ants was in bed, sleepy-headed and not particularly responsive to visitors.

It is hard to admit these things, but I would like to be honest about how I feel, in the hope that others will be able to relate and not feel guilty. It would not be possible for me to admit these feelings if I didn’t love Anthony so the following observations and questions are addressed to him despite the fact that I can’t speak to him about these things:

  1. Ants, we have never talked about your death or made funeral arrangements, so Ming and I have no idea what you want. We are seeing funeral directors next week with our various questions.
  2. You were like a dead person yesterday, but today you were back! I know you don’t know you are dying and I know you don’t even know you have dementia, but I also know that you know me/us.
  3. Every time, especially lately, that I think you are nearly dead, I get panicky and grief-stricken; then you come good again.
  4. Anthony, the other day, when I had my finger on your pulse, I did actually want you to die. I’m sorry, but you were unconscious anyway and I thought it would be easier.
  5. You are 80, Ants. I know you keep telling me you are 16, and asking where you mum is, and seeing baby Ming in every corner of your room, but then, all of a sudden, you are back in the here-and-now.

There must be a better way of caring for carers and I am very interested in helping in any way I can.

I want Anthony to live.

I want Anthony to die.




I guess this is a ‘this-and-that’ post….

The other evening, one of our nephews rang to see how I was, and how Anthony was, and I got a bit weepy, so not long after, his beautiful wife arrived with a bottle of wine and she let me cry into her shoulder. Once I had recovered, we drank some of the wine and talked about what a wonderful man Anthony was/is etc., then she left.

Five minutes later, there was a knock on the door; her car was bogged on the driveway, so I went out to help but could NOT stop laughing and laughing, so I wasn’t of much use! In the end, my nephew had to come over with ropes to pull the car out of the bog. We’ve had a lot of rain and this farm is on the flats so what looks like steady ground isn’t.

When I told Anthony about this the next day, his placid face upturned into a smile – it was wonderful!

I quite like these rather bizarre incidents because humour is now crushing the sorrow out of the day-by-day experience of watching Anthony lose his bearings. Today, we had visits from other wonderful relatives but Ants was mostly sleeping and in bed, so I reassured the carers that him staying in bed was fine and probably much more comfortable at this stage. Today I also finalised the end-of-life documents, but it feels so surreal.

Ming has been writing an album of songs dedicated to Anthony but, this morning, he headed up to Perth for a two-day acting workshop. At 10am, he rang me to say he’d arrived safely and wanted to write a song for me – just me – called ‘Selfless’ and he told me that he thought I was the most selfless person he’d ever known. And then he said something about respecting me and it absolutely made my day! It is impossible to describe how much this kid/teen/man has helped out over the years; he is a legend.

Until now, I don’t think I have properly faced the death thing but, now that I have, I am more ready, I think!