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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6. The most beautiful word: Yes

“Could you just put that skeleton onto the hose?”

“You are always doubling and tripling and doubling.”

“There he is – that little bastard – see? In the corner. With the horse nose.”

“I don’t want to be in this school anymore.”

“This is the most wonderful pub!”

“The dogs need to be let out. Do it gently with the first ones. We have too many.”

“Does the congregation know that you found the bodies?”

“It was a pirate ship and those kids kidnapped me again.”

“See this thing? [often his knee rug]. “Can you loop it around these things?” [his hands.] “Yes, good, that will stop the rain from getting into the crevices.”

The above are just a few sample statements made by Anthony over the last several years. There is a context to some of these statements which I will elaborate on later in this book, but most are uttered spontaneously and sometimes with what seems a subdued desperation.

If you are caring for/or about someone with Dementia who is close to you – a spouse, parent, friend – it can be extremely difficult to know how to respond. For example, it can be very tempting to counter what seems like nonsense with logic, like:

There are no bodies, or a pirate ship. It’s not even raining! We only have two dogs, the hose is fine, we’re not in a pub or a school – we are in a nursing home! Who are these kids you keep talking about? What the hell are you talking about? You are paranoid, you are delusional and I can’t cope with this nonsense anymore. Please, Ants; this is so unfair on me. Pull yourself together!

I’ve highlighted the above to emphasise my frustrations over the years with Anthony’s gradual transition into the confusion of Dementia. Of course, I am not proud of my impatience with him but, early on – especially during the last year Anthony lived at home and the first year of the nursing home – my moodiness was acrobatic and just as unpredictable as his confusion.

The only thing that remained a certainty for us during these tumultuous times was our inviolable love for each other. Anthony’s reluctance to marry me all those years ago stemmed from his anxiety about the age difference (23 years). He didn’t want to burden me with his old age. I said I didn’t care but for some reason, despite my nursing background and my PhD research about Alzheimer’s Disease, I never once considered that one day Anthony would not only be old, but also very sick.

We were married in 1993 and at that time Anthony was fit, robust and full of energy – a passionate dairy farmer. Neither of us could have anticipated that in the first year of Ming’s life, Anthony would succumb to kidney cancer. I can remember taking baby Ming into the hospital to see Ants in between two surgeries, the first to remove a tumour from his left kidney, and the second to remove the whole kidney. Our tears then were not just about the trauma experienced and the idea of cancer, they were also about Anthony being advised not to ride a motorbike anymore.

Anthony was only 58 back then (the same age I am now) and he loved riding motorbikes. Dairy farmers don’t have much time for hobbies, but this was his and, in retrospect, I now see that this would have come as a terrible blow for Anthony. The cancerous kidney was gone, yes, but this experience altered things in a forever way.

Ming had his first ever asthma attack in that hospital room. My mother took him into her arms while I rushed to find a nebuliser and Ventolin for Ming.

Later that week we brought Anthony home – wan, pale, diminished, and so weak. But he soon got better and went back to milking the cows, enjoying being a father, and loving me with a fervour that devastated me because I could already see the writing on the wall. I’m not a scientist or a psychologist but I do believe that our kidney cancer year somehow made Anthony vulnerable to the many illnesses he has contracted since then.

Now, nearly two decades later, Anthony often reassures me that he is getting better.

Me: YES.

 

 

 

 

 

 

 

 

 

 

 

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4. Lost for words

My visits to Anthony are often very silent and this is fine. The other day, as he was half-asleep in his broda-chair (armchair on wheels), I felt such a surge of love for him that tears filled my eyes.

At one point his own eyes opened properly and he said, “Jules?”

Me: I’m here, Ants. I love you so much!

Anthony: Yes I know.

Me: Actually, you’re supposed to say it back.

Anthony: Yes, I know.

Me: SO SAY IT!

He gave me his half-smile and said, “I love you Jules,” then drifted back to sleep.

Later on, when he woke again:

Me: Do you want me to stop saying ‘I love you’ all the time?

Anthony: Just for awhile.

Me: You want to sleep again. Am I that boring?

Anthony: No, you’re not boring.

Me: What am I then?

Anthony: Just slightly boring.

Me: How dare you!

Anthony: I didn’t mean it, Jules.

Me: So why are you looking at me so ferociously?

Anthony: DESIIIIIIIIRE.

Oh.

Any words I was about to speak were lost within my laughter.

Anthony’s half smile broadened to the best of its ability. The muscles in his face have been so affected by Parkinson’s Disease that he often appears to be angry or unhappy, so a smile is like gold. So one of my main goals for each visit is to somehow get that smile happening. When I can’t, I feel a bit defeated and ask for reassurance that he is okay. His answer is almost always the same but often uttered with a that masked facial expression.

Me: Are you happy, Ants?

Anthony: Always happy.

And once again I am lost for words at how accepting of our circumstance this wonderful husband of mine is.

 

 

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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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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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Making mistakes

This afternoon, my first niece, Ashtyn, came to visit us in the nursing home. I was holding Anthony’s hand and chatting about the Sydney conference to Ash, unaware that sleepy-looking Anthony was listening intently, especially when I lowered my voice.

You see, I obviously don’t want Ants to know Ming and I are going to be away for a few days because I don’t want him to feel abandoned, so I wasn’t going to tell him. And I didn’t anticipate that he would pick up on my conversation with Ashtyn in any accurate way because just before she arrived he’d asked me to clear away the mess of non-existent champagne glasses on the window ledge.

But, as soon as Ashtyn left, Anthony said, “So why didn’t you tell me you were going to Sydney?”

Sprung! I fumbled around with reasons and excuses and reassurances that it wouldn’t be for ages, all the little lies tucked inside my throat like baby mosquitoes, and it took ages to convince him that I wasn’t leaving him.

Oh well, I have three days before we go, so I will spend as much time as possible with Ants at the nursing home. It was a mistake to talk so openly in front of him about my own plans and I accidentally made him feel excluded – argh.

Another lesson learned.

The thing that saved the situation was when I remarked on how beautiful Ashtyn looked (pregnant with second child) and he said, “She knows how to do it.”

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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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Happiness

In just over a week, Ming and I are off to Sydney to speak at a conference. Check out the link!

http://www.happinessanditscauses.com.au/

The title of our talk is – yes, you guessed it – “Dementia Dialogues”. I am hoping to convince the audience that it is still sometimes possible to derive, and give, great joy within the context of Dementia. Ming and I are simply going to cite a few examples of the funny and poignant conversations we share with Anthony. We only have a 15-minute slot, so our talk has to be succinct, a bit like a TED talk I guess.

I emphasised the word “sometimes” above because I am well aware that our own experience of Anthony’s Dementia is not necessarily like other people’s and I recognise how lucky we are to have a husband/father who is so resilient. The other day, when I got to the nursing home earlier than usual, and was able to feed Anthony his breakfast in bed, I asked him if he was comfortable and he whispered a booming “EXTREMELY!”

Anthony’s sanguine nature is a wonderful ‘plus’ when it comes to Dementia but every single person who has Dementia is just as individual as those of us without Dementia. Now that I am involved in support groups for carers, I have heard a fair few horror stories and I do remember our own horror story before Anthony’s admission to the nursing home. So I guess another point I want to emphasise in our conference talk is that the idea of placing a loved one in a nursing home needn’t be a tragedy.

I haven’t blogged for so long that now I’m rambling – ha! It’s good to get the words out. Now I just have to prepare for the conference – yikes!

 

 

 

 

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