jmgoyder

wings and things

9. “You seem like a very nice bloke.”

Ming visited Anthony yesterday and once again wasn’t recognised. I am so proud of the way Ming is handling this. Instead of feeling hurt and upset, Ming just goes with the flow and has fun with Anthony anyway.

Ming: Do you know who I am?

Anthony: Well, you seem like a very nice bloke.

Ming: Yes, Dad, but do you know WHO I AM?

Anthony: Aren’t you the hairdresser?

Ming: No – I’m your son – I’M MING, DAD!

Anthony: Yes, that’s right.

Ming has the same booming voice that Anthony used to have. He also has a similar gait and the other day as he suddenly appeared in my view through the front window, I thought for a split-second that it was Anthony. The nostalgia was unsettling, but also quite pleasant. He loves the stories I tell him about how Anthony used to be before and just after Ming was born. These stories have helped Ming to cope with Anthony’s ill health over the years, especially lately. Ming has very few childhood memories of having a father who was robust, gregarious, the loud, life-of-the-party, generous host because he was a one-year-old when Anthony suffered his first cancer – kidney cancer.

One of the most wonderful things for me is to see so many of Anthony’s qualities embodied in this larger-than-life son of ours. Ming is full of humour and a kind of boisterous grace. To hear him tell me about how fantastic his visit to Anthony was yesterday is like a gift.

Two very nice blokes.

 

 

 

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7. “When do you get your soul back again?”

[As I prepare for the talk Ming and I will deliver at TEDx in Bunbury, I wrestle with challenge of being concise when I could talk forever about our experience with Dementia: Anthony’s unawareness that he has Dementia; Ming’s transition from anger to acceptance; and my own attempts to find and create meaning in our interactions. I want this 15 minutes to somehow make a difference in the way people in general respond to people with Dementia. Once again, the following is a draft of a chapter for the book, Dementia Dialogues and any feedback appreciated.]

7. “When do you get your soul back again?”

It was a few months ago and I was already attuned to our cross-purpose-ish conversations, where, for example, Anthony would mention a tractor and I would counter his tractor-anxiety with an exclamation about how sweet potato was in season again.

So, as I switched the television station from Dr Phil to the ABC news, Anthony did the exact same thing with our conversation:

Anthony: When do you get your soul back again?

Me: WHAAAAT?

Anthony: Your soul.

ME: But I haven’t lost my soul, Ants!

Anthony: That’s good.

Anthony is the least spiritual person I have ever known so his mention of my soul was disconcerting as I’m pretty sure I have a reasonably healthy one. Nevertheless it made me realise that inside the mind of a person with Dementia are all sorts of references to all sorts of triggers, both past and present. His mention of soul may have been a bit like me telling him that the power was out at the nursing home one day, i.e. there was no electricity. Hours later, we had this conversation:

Me: Are you angry with me, Ants?

Anthony: Of course not.

Me: Then why do you look so sad?”

Anthony: My power is out.

So maybe Anthony’s casual reference to my soul, as if it were something I’d temporarily misplaced, like a bangle or a scarf (which I lose all the time), was just him using one word, ‘soul’ for another, more tangible thing? After all, I don’t even know what a soul is!

Nevertheless, that soul conversation still resonates, still makes me wonder, and still compels me to keep on trying to continue these dialogues. Sometimes, when Ants is too sleepy, or confused, to answer my ‘yes or no’ questions, and he tries to tell me something that I can’t understand, I just say this:

Me: It’s okay, Ants. I can read your mind!

https://tedxbunbury.org/

 

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3. Existence

One of the most poignant conversations I’ve ever had with Anthony was a few months ago. From time to time he comes out with the most profound observations and I scribble these into my notebook because I know that later – sometimes much later – I won’t believe that he really said that.

Me: Is it okay if I write a book about you, Ants?

Anthony: No.

Me: Why?

Anthony: Because I don’t exist.

Was this dreadful statement about not existing a wisecrack, a joke, sarcasm? Anthony always had the most incredible attitude to life, and still has! He has no idea that he has Dementia and, now that he is virtually bed-ridden, I just tell him it’s the Parkinson’s Disease that makes him so tired.

Way back when we weren’t even married, there was an enormous spider in the kitchen which I rather shriekingly killed with a can of mortein. Later on, Anthony came in from milking the cows and I told him about my adventure. He looked at me, grief-stricken. “That was my pet spider, Jules!”

I was devastated! How could this man possibly ever love me when I had killed his pet spider? How could I make amends? Could I find another spider that looked like the one I’d killed? Did pet shops sell spiders?

We had a rather subdued meal until finally, unable to contain his mirth, Anthony guffawed and admitted that he was just joking. I am yet to experience a ‘phew’ quite like that!

And what is the point of this chapter? Well, maybe – just maybe, Anthony is just fooling around with us. Maybe he doesn’t have Dementia after all. Maybe these recent years have been a strange nightmare.

Me: Is it okay with you if I write a book about that spider, Ants?

Anthony: Of course.

 

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2. “Where is Mum?”

Anthony asks this question at least once a week and, because it distresses him, I have to be really careful with my answers. If I say she is fine and at home on the farm, he worries that she is alone and I have to reassure him that Ming is there with her.

This wonderful woman, Anthony’s mother, fondly called ‘Gar’ by family and friends, died over two decades ago. I adored her, was frightened of her (she was a true matriarch), and I was with her when she died at the age of  86. Her last words to me were, Will you look after Anthony? And, buzzing with all of the feelings that come with first love, I said yes.

I was a teenager, just 18, and Anthony was 41. My adoration of him was embarrassingly obvious to both Gar and Anthony. Gar encouraged it in a rather mischievous way but Anthony spurned my clumsy adolescent love-sick self, out of respect for my youth. It would be many years before he and I graduated from platonic to romantic.

Finally, at the age of 56, this workaholic, dairy farmer, best friend, bachelor, proposed. By then, I had steeled myself to imagine life without Anthony, but I had this absolute certainty about our son-to-be. And I was right. But I didn’t know that then.

Anthony’s proposal of marriage was almost too late as I was beginning a tentative relationship with another man – a kinder, younger, more generous man.  I was in my early 30s by then and thought it best to finally move on and away from Anthony.

Then, whammo, Anthony just came to his senses. It was so sudden and such a shock to hear him crying on the phone and declaring love. I had never known him to express such emotion so I was flabbergasted and cynical. But I got over that and said yes to the marriage proposal.

Gar had always encouraged it, after all!

Anthony: Where is Mum?

Me: She’s in the kitchen, making breakfast, Ants.

 

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1. Sixteen Kilometres

I have been wanting to write a book about our experience of Dementia for some time so this is a chapter draft. I am numbering them so I can keep track. Any feedback appreciated.

SIXTEEN KILOMETRES

When Anthony says he has run sixteen kilometres, fixed all of the fences around the farm, and found the rogue mouse, do I correct him? Of course not!
Yes, Anthony used to love running around the paddocks (for the sheer joy of running). He also used to love the fiddly aspects of fixing fences, and I vividly remember his hilarious determination to eliminate a mouse, using a fly swat, in the hallway of our house.
So, when Anthony talks about these things as if they have just happened, I go with the flow by acknowledging these accomplishments, hallucinations and memories. I only ever contradict Anthony, if what he is seeing, or sensing, is distressing to him (more about this later).
Anthony: There he is in the corner, Jules.
Me: Who?
Anthony: The baby.
Me: You mean Ming?
Anthony: That furry one there [pointing to the corner of the room where is nothing]
Me: So is it a dog or a child?
Anthony: A bit of both.
Anthony sometimes forgets that Ming (our 23-year-old son) is all grown up, so he often ‘sees’ Ming as a baby or toddler. This hallucinatory thing mostly happens when I am visiting by myself. When Ming visits by himself, Anthony often misrecognises Ming as a cousin, uncle, even a deceased relative. I had already prepared Ming for the inevitability of Anthony not recognising us so, when it happens to Ming, it’s okay.
To some people, the idea of not being recognised by a spouse or parent or friend is the last straw. It’s quite common for relatives and friends to stop visiting a loved one, because they aren’t recognised. So what! As long as you recognise him or her, then surely that’s what counts. People with Dementia don’t intentionally hurt the people they used to know so well; they don’t intentionally misrecognise.
Anthony: Where’s Julie?
Me: I am Julie.
Anthony: Oh, that’s right.
Maybe it’s the constancy of my visits, maybe it’s because, despite Anthony’s Dementia, he and I still adore each other, maybe it’s just luck, but Anthony almost always knows who I am. I am so glad that I’ve been transcribing our dialogues for so long because, even though these conversations are mostly short and sweet, they are like gold to me.
Not long ago, I entered his nursing home room after days of not being able to visit because I was sick. It was the best welcome I have ever received (from anyone):
Anthony: Wonderful, wonderful, wonderful. Beautiful, beautiful, beautiful. I was just trying to conjure you.
Me: Oh, Ants – I’ve been so sick!
Anthony: Yes, I know. The kids told me.
Me: Are you okay?
Anthony: I’ve been running.
Me: Again? No wonder you look so tired! How far did you run this time?
Anthony: Sixteen kilometres.

 

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Unloneliness, empathy and fatigue

Yesterday’s post about loneliness was, I realise now, not just about me. I had been to a carer support meeting in the morning, then to see Anthony at noon, then to visit some residents at a different nursing home in the afternoon. After I got home in the early evening, I messaged a couple of friends whose loved ones are in care.

In terms of volunteering, it was a great day but I guess I must have absorbed a little too much of other people’s loneliness (in the context of Dementia). The sore throat that I was trying to ignore did a little crescendo thing, reminding me to rest up.

The various talks at the conference gave me some insight into the concepts, and practicalities, of, for instance, empathy. Somebody used the phrase, ’empathy fatigue’ and I thought aha – so that’s why I keep getting sick.

However, when I looked this phrase up, I learned that empathy fatigue happens to people whose empathy resources have dried up due to fatigue. Oh! I guess I got that wrong because my empathy is still on full alert, but my fatigue is extreme.

The responses to my post about loneliness are a reminder to me that I am not alone in my situation. I am so grateful for this support because it helps me to support other people dealing with the grief and loss associated with Dementia.

Unlonely x

 

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Lonely

I used to brag to people that I wasn’t lonely, that I was comfortable with being alone, and comfortable with my own company. But, since Anthony has been in the nursing home – nearly six years now – I have experienced such a piercing loneliness, and a longing for him to be home again (impossible) that sometimes I want to howl like an abandoned, injured animal. We are on 100 acres of farmland so, with no close neighbours, sometimes I do howl. I try very hard not to do this in front of Ming but sometimes it just happens – the uninhibited grief, the howl of longing for the impossibility of Anthony coming back home, the absolute misery of our situation.

On the other hand, I am not willing to give in to this kind of despair and I am determined to continue to make myself at home in Anthony’s nursing home room.

I would never want him to be as lonely as I am.

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Purpose

I have a new sense of purpose, having returned from the Happiness and its Causes conference in Sydney. Ming and I delivered a talk entitled “Dementia Dialogues” in which we described our experience of Anthony’s Dementia. I have already written about this on Facebook so will not repeat myself here.

The conference experience was both fascinating and enriching with an eclectic mix of scientific and experiential approaches to happiness. Kindness (both to others and ourselves), generosity and gratitude were recurring themes and Ming and I learned so much.

One of the best outcomes for me was the sense of purpose I now have in terms of writing the book I have been trying to write for so long, but didn’t know where to start. In preparing notes for our talk, I had unwittingly created a loose framework for this book and, since I only had time to convey some of the points Ming and I wanted to make, those notes are a great incentive.

My plan is to write a short-ish book, with very short, easily digestible chapters, about the strange and wonderful conversations I share with Anthony, Ming, carers, relatives and friends. In this sense I think that the title “Dementia Dialogues” will work and I plan to pitch it to Penguin publishers.

Instead of a rather vague sense of purpose, I now think I have something more concrete and this blog is a great platform from which to test my ideas. I’ll try to limit chapter drafts to 500 words and post on the blog from July 1st – hopefully two per week.

Several weeks ago, I told Anthony I wanted to write a book about him and he said “No”. When I asked why, he said something so interesting, but so poignant, that I was taken aback.

“Because I don’t exist,” he answered, cryptically.

At the time, I reassured him, of course, but I didn’t have that sense of purpose I have now; I didn’t have the right words, even for myself.

You do exist, Ants, and our ongoing story is my purpose.

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Magnificent

I am spending as much time with Anthony as possible before Ming and I go to Sydney for five days. Yes, anyone would think we were going to the moon for a year but I do worry, mainly because I was unable to visit Anthony for so long when I was in hospital. I know my mother will visit him every day (she is absolutely wonderful) but there is something quite visceral about the way he misses me that has nothing whatsoever to do with cognition.

It is more to do with the passing of time; the longer the gaps between my visits, the more he suffers the unspoken pain of simply missing me – just my presence.

Today, I stayed with Anthony for hours, feeding him his lunch in the common dining room where he often is now; taking him back to his room to half-watch Dr Phil, Master Chef and Judge Judy; him listening speechlessly to the rapid pace of the conversation I had with my mother when she visited; looking bewildered as I left, until I promised to bring more chocolate.

At one point (it was probably one of Judge Judy’s calmer moments), I said, “This is great, isn’t it, Ants.” I had purposefully put my hand between both of his, then tucked them under his knee rug.

“Magnificent” he said.

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Beautiful bloggers

To those blog and Facebook friends who have commented on my recent posts, thanks so much for your support. I especially appreciate the feedback regarding the conference talk Ming and I will be delivering next week.

 

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