jmgoyder

wings and things

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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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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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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2. “Where is Mum?”

Anthony asks this question at least once a week and, because it distresses him, I have to be really careful with my answers. If I say she is fine and at home on the farm, he worries that she is alone and I have to reassure him that Ming is there with her.

This wonderful woman, Anthony’s mother, fondly called ‘Gar’ by family and friends, died over two decades ago. I adored her, was frightened of her (she was a true matriarch), and I was with her when she died at the age of  86. Her last words to me were, Will you look after Anthony? And, buzzing with all of the feelings that come with first love, I said yes.

I was a teenager, just 18, and Anthony was 41. My adoration of him was embarrassingly obvious to both Gar and Anthony. Gar encouraged it in a rather mischievous way but Anthony spurned my clumsy adolescent love-sick self, out of respect for my youth. It would be many years before he and I graduated from platonic to romantic.

Finally, at the age of 56, this workaholic, dairy farmer, best friend, bachelor, proposed. By then, I had steeled myself to imagine life without Anthony, but I had this absolute certainty about our son-to-be. And I was right. But I didn’t know that then.

Anthony’s proposal of marriage was almost too late as I was beginning a tentative relationship with another man – a kinder, younger, more generous man.  I was in my early 30s by then and thought it best to finally move on and away from Anthony.

Then, whammo, Anthony just came to his senses. It was so sudden and such a shock to hear him crying on the phone and declaring love. I had never known him to express such emotion so I was flabbergasted and cynical. But I got over that and said yes to the marriage proposal.

Gar had always encouraged it, after all!

Anthony: Where is Mum?

Me: She’s in the kitchen, making breakfast, Ants.

 

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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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Unloneliness, empathy and fatigue

Yesterday’s post about loneliness was, I realise now, not just about me. I had been to a carer support meeting in the morning, then to see Anthony at noon, then to visit some residents at a different nursing home in the afternoon. After I got home in the early evening, I messaged a couple of friends whose loved ones are in care.

In terms of volunteering, it was a great day but I guess I must have absorbed a little too much of other people’s loneliness (in the context of Dementia). The sore throat that I was trying to ignore did a little crescendo thing, reminding me to rest up.

The various talks at the conference gave me some insight into the concepts, and practicalities, of, for instance, empathy. Somebody used the phrase, ’empathy fatigue’ and I thought aha – so that’s why I keep getting sick.

However, when I looked this phrase up, I learned that empathy fatigue happens to people whose empathy resources have dried up due to fatigue. Oh! I guess I got that wrong because my empathy is still on full alert, but my fatigue is extreme.

The responses to my post about loneliness are a reminder to me that I am not alone in my situation. I am so grateful for this support because it helps me to support other people dealing with the grief and loss associated with Dementia.

Unlonely x

 

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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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