jmgoyder

wings and things

Retreat

I am off for a little retreat so will be off-line for a bit. Once again, many thanks for messages to Ming and me. I still can’t quite believe that Anthony has gone.

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A Ming melody (take 2!)

Many thanks to Kaleb Treacy for helping Ming to put this music together for the funeral of his dad, Anthony.

Kaleb Treacy

Menzies Goyder

 

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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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Privilege.

wordpressjodie

One of the many privileges you receive  working in a Nursing Home is getting to know your resident.

Through their eye’s, they share beautiful memories and stories of A Life Lived.

They share how very Proud they are of their Wife and Son. I have the privilege to be able to sit with A resident as they Lovingly explain  the family dynamic’s, in all it’s complexities.

It is these very moment’s that I do what I do and why I love it so very much. When my Residents journey come’s to a end, I have a understanding of the families pain and that is  itself a Honour.

I have some understanding of the level of devotion my Resident has for his Wife.

The struggle he endured in the early days, Loving her so intensely  but waiting for the right time to make Her His Wife, Like the True Gentleman he is. He once said…

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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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“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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5. Banter

Anthony, Ming and have always enjoyed bantering and, fortunately for us, Anthony still enjoys it, despite his Dementia. He has very thick skin when it comes to being teased and has always loved making people laugh.

Sometimes, he flabbergasts with his one-liners and his quick-wittedness. Last Christmas we all decided to forego presents and instead just partake in some very expensive crayfish.  Anthony feigned disappointment and I became defensive.

Me: You didn’t get me a present either!

Anthony: Well, that was a calculated risk.

For someone who is so often unable to articulate what he wants to say, both cognitively (the Dementia) and physiologically (the Parkinson’s Disease’s effect on this throat muscles) he comes out with some absolutely brilliant come-back remarks. It’s not just us he banters with, he also responds to the banter of friends, family and the staff. If there happens to be a group of more than two in his room, he finds it difficult to follow what is sometimes a very lively conversation but one-to-one his wit is often surprisingly apt.

Nevertheless these kinds of dialogues are few and far between now as much of what Anthony says is either indecipherable or incoherent much to his obvious frustration. At those times Ming and I have learned to divert the conversation back to banter and this usually works really well.

Ming’s style of banter is very boisterous and he will pretend he is going to leap onto Anthony’s lap just as he did when he was little, and/or actually sit on his lap, ruffle his hair and yell things like, “Daddywaddy, my favourite parent!” (He especially likes to say this when I am there too) much to Anthony’s amusement.

Diversion is also a great way of steering a distressing conversation away from itself. For example:

Anthony: When are you taking me home, Jules? This recurring question is always tricky for me as Anthony has no idea that it is now years since I have been able to bring him home. So I resort to banter. I know it seems contrived but it works for us. In answer to the home question, I will often say something totally off topic, as I did the other day:

Me: You have such a BIG nose, Ants. 

Anthony: You just want to see me naked.

And in a matter of seconds the fraught and heartbreaking reference to home is forgotten.

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