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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The retreat: 2

In the evenings, Karen’s husband, Vince would come home and serve us pre-dinner drinks – mineral water in beautiful wine glasses (the retreat was alcohol-free) and then seat us at the dining table. This table was in itself a visual gift – white linen table cloth, fresh flowers, scented candles. The other guest, J, and I were then served two courses of amazing food – mostly vegetarian/vegan/raw, beautifully interesting and creative. The four of us would chit-chat during the meal as Karen served and Vince washed up. There was a feeling of leisurely calm in the serving and partaking of food and Karen was very happy to share her recipe secrets.

I have never really thought about the idea of sustenance before but Karen (a qualified chef) provided us with such amazingly healthy food that we came away from that dining table sated, even comforted somehow. Having not eaten much of anything since Anthony died, it was a luxury to be fed in such a kind way. I kept wanting to hop up and help with the dishes etc. but soon learned that it gave Karen and Vince a lot of pleasure to serve us. I felt like a queen!

After dinner, I mostly retired to my suite and watched television and/or cried for Anthony. The resort had an extensive dvd and book library so, as a movie fan, I was in my element. It was absolutely wonderful to know that, once I’d retired, I would not be disturbed and that private space of grief, and movie distraction, and tears, and sleep helped me recover. Plus my bathroom had a big spa bath and I made the most of that as we only have a shower at home.

I realise that these posts are a bit disjointed but it is impossible to describe KalyaaNa – https://www.kalyaanawellnessretreat.com.au/ – in a single post. The experience was surreal and valuable at so many levels.

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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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Anthony’s death

Anthony, you are still here with us Рwith me, and with Ming. You can be seen in all of the camellias you planted, and heard in the squawking of your guinea fowl. You are inside the taste of salmon mornay, and the aroma of the dairy cows. But you are also not here  Рstained glass of my soul, the king of Paradise Road. Beautiful husband. Beautiful father. We love you, Anthony.
The above is what I wrote for the death notice in today’s newspaper. Anthony died on Wednesday night at 9.40pm after a short struggle with pneumonia. It’s Saturday today and I keep forgetting and thinking I need to get to the nursing home. Last Friday he was alert and cheerful and that was the day he said his final words to me – “You’re still beautiful, Jules.” I wrote about that in my previous post, not knowing then, as I answered “You’re the beautiful one, Ants” that this would be our last conversation.
Anthony died after his first ever dose of morphine. The doctor said this would take care of any pain he might be in and also help ease his breathing. I rang Ming and his girlfriend, Amber, and asked them to come and chat with the doctor who had told me that it was impossible to predict, but that it would not be a matter of weeks, but days. After the doctor left, the three of us went outside because, even though Anthony was barely conscious, I didn’t want him to hear my question to Ming – “Do you want me to ring you straight away if Dad dies in the night?” It was a silly question really because of course Ming said yes. I had poured myself a small whisky from the bottle in Anthony’s cupboard and was sipping it happily, relieved that would he would be comfortable for the next few days, when the nurse on duty came out and said, “He’s gone.”
I couldn’t believe it and we raced back into his room. It is difficult to describe the thunderstorm of shocked grief that washed through me so I am not even going to try to express that here. I thought it was a matter of days, not minutes.
One of the most wonderful things about Anthony’s death is that, despite the many, many years of his illnesses, he didn’t suffer until just before he died.
I looked at his tiny, diminished body, and I saw a giant of a man.
Oh how much I love you, Ants.
PS. The reference to Paradise Road was not meant to be metaphorical. We do actually live on Paradise Road.
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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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“A person with dementia is not a person who is dead and gone.”

This was the sentence that I began, and ended, our TEDx talk with last week. Like the other speakers, Ming and I only had 15 minutes to deliver this talk which was a challenge as I had written this massive missive of around 20 pages! Thankfully Ming convinced me to turn this into a cue card presentation and we practised it in a hallway before the event began.

It is extremely difficult to talk about Dementia because everyone has a different story of what it’s like (for both the person with the disease and the carers). Ming and I now have a disclaimer that admits our luck in that Anthony’s personality hasn’t changed and that this is one of the many reasons we still find joy in our interactions. We acknowledge that other people, coping with the multi-faceted aspects of Dementia, may be in hellish situations.

I am so glad that Ming and I had the opportunity to talk about our own situation. Anthony is immobile now, his previously loud voice a whisper, and mostly he doesn’t know who Ming is. But he is still alive, free of pain, accepting and full of love for me; it’s a beautiful thing.

If I can influence just a single person to visit their spouse, parent, friend, I will feel I’ve made a slight difference. There are so many thousands of people with Dementia in nursing homes who never have contact with loved ones; these people are, quite possibly, the loneliest people in the world.

A person with dementia is not a person who is dead. And nobody is ever, ever, gone.

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Doubts

Ming and I did our TEDx talk at the Bunbury Entertainment Centre a couple of days ago, and I think it went well. Ming and I have discovered that we can do this kind of presentation by bouncing off each other. This is our fifth joint presentation via radio or podcast; I think Anthony would be proud.

But I have so many doubts!

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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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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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