jmgoyder

wings and things

“Thoughts on hearing loss”

Awhile ago my mother had an epiphany about being deaf. She was at a social occasion and, as usual, finding it very difficult to keep up with the conversations around her. Meg never complains about this despite the fact that, at times, she must get extremely frustrated and even depressed about not being able to hear. Her hearing loss wasn’t gradual; it happened all of a sudden in 2003, just like that! Since then, it has become worse, even with the use of various hearing aides.

I love the following poem that she wrote because it shows the kind of resilience she has, and is a great example of acceptance. With three children, eleven grandchildren, with spouses and partners, four great grandchildren, and one on the way, family occasions are often loud, boisterous and Meg often misses out on any or all of the conversations around her dinner table, even if only a few of us are there. But the poem shows her ability to derive joy anyway:

The Owl
I perch nearby
Look down and see
A nest filled up with hatchlings.
Their beaks are open wide
A thousand feathers flying.
The patient mother drops a worm.
They squawk and flap.
Cacophony of joy.
She drops the next
And bedlam fills the air.
I watch.
I smile.
I share.
I am alone
But
I am there.

 

 

 

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Our TEDx talk

Here is the link to the talk Ming and I gave the other day at Bunbury’s TEDx event.

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12. The proposal

Anthony was in good spirits and wide awake this afternoon. I had Pip (our miniature schnauzer) with me, so I plonked her onto the bed next to Ants and we all watched a cooking show on the television.

When it came time to leave, Anthony was quite happy for me to go as he thought I was going to work. This was such a relief because yesterday he got cross with Ming for not bringing him home, so I was a little apprehensive about today.

I am so used to seeing Anthony’s blank or sleepy facial expressions (due to the Parkinson’s Disease effect on his facial muscles), that when he does smile it is like some sort of miracle. He was so alert and responsive as I was leaving that I wanted to steal our goodbye kiss/hug and bring it home.

Anthony: Let’s get married, Jules!

Me: We are married, Ants!

Anthony: Yes, but not officially. We should get married as soon as possible.

Me: But we are married! Remember how Tony [my priest friend] came down and married us?

Anthony: That’s right – just the other day. You mean last week?

Me: Yes.

Anthony: So what do you say?

Me: What?

Anthony: Let’s get married, Jules.

Me: Oh! Okay – yes!

I am not quite sure why the excitement in Anthony’s 81-year-old voice, sounding so much younger in that simple proposal, has affected me so much this evening. It’s as if we are in one of those time loop situations.

 

 

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Doing it

I bumped into some relatives today at our local, rural, shop and they said they had intended to go and see Anthony today, but it was too late in the day. It was raining relentlessly so I admitted that I, too, hadn’t gone into town to see Anthony but that Ming was doing it.

Doing it?

Why did I describe my visits to Anthony as a job that needed to be done? Why didn’t I say, “Ming is visiting Ants today”? instead of “Ming is doing it today.”

I am so embarrassed that I expressed myself this way because for all of these years I have felt and believed that the romantic love I share with Anthony would somehow sustain us. In fact, as Ming often points out, Anthony is now mostly lost in his world of Parkinson’s Disease Dementia. Yesterday, for example, Anthony was mostly asleep during my 2-hour visit and this is often the case.

Perhaps love is not simply a feeling but also a decision. For me, this realisation has made all the difference recently because in deciding to love someone, that ‘do it’ decision, is an absolute in the face of multiple contingencies.

Do it.

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8. Carrot juice

Several years ago Anthony and I embarked on a carrot juice diet and we went through two juicers (warranteed and replaced) in our quest for better health. We did this for around two months until our skin took on a rather strange, yellowish hue and Anthony developed arthritic pain. At the time, I did a bit of research and discovered that an overabundance of carrots can actually be harmful so we gladly quit the carrot juice and laughed ourselves silly about what idiots we’d been.

Looking back to that time, I now think that perhaps Anthony was showing signs of the Parkinson’s Disease Dementia that has now pretty much paralysed him, physically and cognitively. I guess I was trying desperately to find a solution?

I am a great fan of cold-pressed juice but I also know that it takes a hell of a lot of carrots to make a single glass of this elixir and nobody in their right mind would ever eat that many carrots in a single day. Nowadays I make juice with the outer lettuce leaves most people throw away, a single carrot, an apple, and orange, and a bit of ginger. This quest for health has consumed me lately due to my recent battle with mycoplasma pneumonia; I need to be well again and it has taken so long to get better. The hospital doctor did actually include (in his written report) my suggestion that my illness might have something to do with grief but, in the end, that was dismissed, the evidence of the mycoplasma bacteria was found, and I was given mycoplasma-specific antibiotics.

Anyway, back to carrot juice; once I was out of hospital I decided to go on a health kick. I’d lost five kilos so fast that my arms were (and still are) wasted and (hilariously for Ming) still stick-like. The other day, I reminded Anthony of our carrot juice adventure and he smiled. He remembered!

Anthony: But it’s good now isn’t it?

Me: Yes.

Anthony: I prefer chocolate.

 

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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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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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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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