jmgoyder

wings and things

Ming’s honesty

One of Ming’s friends asked him the other day if he were relieved that Anthony had died. Ming was taken aback and slightly affronted at the question, but eventually said yes.

After admitting this relief, he went on to say to his friend that it was as if a black cloud had lifted.

When Ming told me this today, I responded by saying that this was okay but my own feelings were different and that Anthony’s existence in the nursing home was never a black cloud for me despite the many cloudy days, weeks, months and years of illness. If Anthony had lived beyond the pneumonia that killed him, he would soon be entering his sixth year at the nursing home. He was already pretty much bed-ridden but to add suffering to the situation would have definitely been a black cloud for me too; I would have had great difficulty coping with Anthony suffering.

That’s why I am so grateful that Anthony died when he died. The quickness of his death still shocks me but I am gradually recovering from that shock I guess. It will take much longer, of course, to process the grief I feel (my own black cloud?)

In the meantime, I am fortunate to have such great support from family and friends. I’m very grateful for messages I’ve been remiss in replying to.

Ming’s honesty is sometimes ruthless but it is so refreshing that he isn’t nervous to say what he really thinks and feels. I didn’t know that Anthony’s nursing home existence had become a black cloud for Ming and I don’t know why I didn’t know that.

 

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Getting back on my feet

One of the most unsettling things about Anthony’s quick death, after so many years of him outliving his various prognoses, is that I had prepared myself, psychologically and emotionally, for many more years of life. I had made lists of ‘things-to-do-in-the-nursing home’, like sorting out photos, collating everything I had already written about dementia and Anthony into book form, transcribing Ming’s dialogues with his dad, finding a new comedy series to watch, getting my mother to teach me how to make hairpin lace shawls – those sorts of ongoing things.

I had planned, in advance, all of these things … to do in the nursing home, side-by-side with Anthony, so the disorientation I have been experiencing since he died is understandable I guess. When I went to see our doctor for a bit of a debrief, he, too, was surprised at how quickly Anthony died after being given morphine (for the very first time) for his pneumonia. Then the doctor said that he had noticed a deterioration over the last several months and we laughed about how, whenever he said that to me, I would always reply, “Oh no – you just got him on a bad day – he is amazing!” Perhaps I was in denial but I don’t think so because Anthony would always, always, come back.

That night – the night Anthony died – there was a distinct feeling that he was pulling away from me. At the time, I thought I was probably holding his hand too fiercely, too tightly, so I loosened my grip and felt his hand press and release mine until I let go. It was then that I went outside with Ming and Amber to discuss whether to ring Ming if Anthony died in the night. As I’ve already said, this was a moot point because of course Ming wanted me to ring him and, anyway, I didn’t expect Anthony to die that night as I had only just gotten used to the idea that he may only have a few more days to live.

We were only out of Anthony’s room for a matter of minutes when the nurse came outside and said he was gone. The disbelief of that dreadful moment still resonates but I don’t feel guilty for not being in his room when he drew his last ragged breath, because he always knew that I would be back. It is impossible to know, of course, the philosophical wherewithal of that timing. Could Anthony only die once I was out of the room? No – well, I don’t think so.

The fact remains that he died, full stop. Anthony died and the more I remind myself of this resounding truth, the more able I am to find my feet again. During the first two days of the retreat, I kept tripping over these feet and bumping into doors, my feeling of balance askew. But gradually I regained a sense of physical balance and was able to go for walks in the surrounding bush, my legs and feet transforming from a toddler’s to an athlete’s. And my breath came back as if I had just found air after being submerged.

I didn’t want to continue to blog about grief but I can’t seem to help myself. The sharing of laughter and memories and anecdotes with friends and family have been both healing and invigorating. But, at the end of every day, here I am absolutely lost without Anthony’s aliveness.

Walking is going to be my new ‘thing’. I have already found some walking trails nearby and I am going to walk and walk and walk and walk.

 

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Anthony’s funeral

To my very dear blog friends, Facebook friends, and all whose messages to Ming and me have been so comforting, many, many thanks. I haven’t been able to reply individually yet so I am expressing my gratitude here.

The funeral was yesterday: a chapel service conducted by my best friend, Tony, an Anglican priest. I had asked my mother, Meg, to do the reading and she picked the lyrics of a song made famous by Frank Sinatra and, later, Elvis Presley. I didn’t know the story behind the words then but I knew they were the right words.

Softly, I will leave you softly
For my heart would break
If you should wake and see me go
So I leave you softly, long before you miss me
Long before your arms can beg me stay
For one more hour or one more day
After all the years, I can’t bear the tears to fall
So, softly as I leave you there
(Softly, long before you kiss me)
(Long before your arms can beg me stay)
(For one more hour)
Or one more day
After all the years, I can’t bear the tears to fall
So, softly as I leave you

Then, a couple of days ago, Meg thought she would like to give the reading over to Mandy, one of Anthony’s nieces. This was an absolutely lovely exchange and Mandy looked up the history of the words and found out that Presley said the song originated when a man was dying and his wife was sitting by his bedside. As she began to doze off, he felt himself beginning to die and he wrote the words to the song on a notepad.

During the last 30 hours of Anthony’s impending death I had dozed off a couple of times, holding his hand. It was only when I woke and went outside to have a chat with Ming about the possibility that Anthony might actually die (something I couldn’t get my head around), that Ants died. Just like that. Softly, peacefully, alone but not alone because we were there.

It is impossible to describe my grief and shock at 9.40pm Wednesday 23rd, so I am not even going to try here. I can remember saying ‘no’ a few times because I couldn’t believe it. I hugged and kissed him, unable to accept that he was dead.

After the reading, Ming and I got up and did the eulogy and I was a bit shocked to see how many people were there – 150 maybe and many people had to stand as the seating was taken so fast. Old school friends of Anthony’s, nursing home staff, his entire extended family and my entire extended family, neighbours and friends and also people I’d worked with at the university, as well as a bunch of Ming’s friends. I felt so proud that I had a husband, and Ming had a father, who would draw such a crowd of people who loved and respected him so much.

https://barrettfunerals.etributes.com.au/etributes/anthony-goyder/dvd-tribute/

This man, Anthony, was my hero, my inspiration, and my definition of love.

 

 

 

 

 

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“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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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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