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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Anthony’s death

Anthony, you are still here with us – with 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  – stained 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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14. Death and dying

About a year ago, Anthony had a series of TIAs (mini-strokes) and was unconscious on and off for a few days. I panicked and began funeral arrangements but he ‘did a Lazarus’ and has been as okay as is possible since then. Recently – the last few days – I have noticed a marked deterioration and this afternoon I couldn’t wake him up and he looked deathly.

I am once again afraid even though I know that tomorrow he will probably be bright-eyed again like he was a week ago. On the other hand, I think I better go back to the funeral people and finish the arrangements just in case.

A friend of mine, whose husband has been in care for around the same time as Anthony (he had a massive stroke), has invited me to a seminar this week on death and dying so I’m going to go. I think it will help me to be more prepared mentally and emotionally. If Anthony were suffering constant pain or distress I would be wanting him to die, but he is so comfortable and uncomplaining that I can’t even imagine it.

It is so many years now that I have been trying to prepare myself for Anthony’s death – ever since the prostate cancer diagnosis when the urologist said he probably had 1-3 years to live (around eight years ago!) But then the Parkinson’s disease took precedence and has been by far the more debilitating of the two diseases.

The fact that Anthony is still such a huge part of my life on a daily basis (even when I don’t go in to the nursing home), the fact that I don’t find visiting him and being with him at all onerous, and the fact that we derive so much enjoyment from each other’s company, leaves me ill-prepared. It will not be a relief when he dies; it will be the most grief I have ever felt, and I’m not ready.

I don’t think Ming is ready either, although he just assured me that he is, well, sort of. He also assured me that he will come with me next time I make an appointment with the funeral directors. I think it’s about time we got back to the business side of Anthony’s death.

One of the things I should probably do is to figure out what to do with my ‘Anthony time’ once he is gone. Of course there is the book I’m writing and that will help, but the gap he will leave in our lives is going to be massive.

This feels like the peak of the anticipatory grief I have felt for so long that it’s like a second skin; this is the knife edge of the most terrible mixture of fear and love. But perhaps this isn’t the end after all and tomorrow Anthony will look at me, smile his slow smile and repeat what he said the other day: “You’re still beautiful, Jules.”

 

 

 

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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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11. Lightning visits

During my bout with mycoplasma pneumonia, I wasn’t able to visit Anthony for about a month, if I include the week before and after hospitalisation.

Ming and my mother, Meg, visited him almost daily and that way I could speak to him on the phone, tell him (in my usual dramatic way) that I was terribly sick and in hospital and that’s why I wasn’t there with him. All these weeks later, now that I am well again, Ants still remembers my absence and continues to ask me if I am okay. A couple of the carers at the nursing home said that he behaved differently during this time, that he was uneasy I guess. I think that maybe the way he was missing me was quite visceral, rather than cognitive but I don’t know.

Now that I am pacing myself better, and looking after my health with lots of green juice, homemade dahl, and sourdough, I’ve allowed myself to do what I call ‘the lightning visit’ –  a visit lasting a few minutes rather than a few hours.

The lightning visit idea allows you to visit your loved one fleetingly, but memorably. I might spend most of an afternoon, holding Anthony’s hand, watching his favourite comedy, whispering sweet nothings into his ear, and the next day he will say, “Where have you been for so long?”

On the other hand, whenever I am on the fly and in a rush, Ants remembers my visit – the rush of it, the urgency of me having to be somewhere else. Sometimes that ‘somewhere else’ is a volunteer commitment, a get-together with friends, a dentist’s appointment, but sometimes this is my excuse to go home.

The other day, when I was leaving Anthony after a lightning visit, I apologised to him and he said, “Don’t be sorry, Jules. You are so sweet.”

Okay so I am not particularly fond of the word ‘sweet’ because it’s just too sweet, but it reminded me of when Anthony was wrestling with the idea of us getting married. He was so worried about our 23-year age difference and kept saying that I was too sweet.

I remember that moment vividly.

Lightning

 

 

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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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