jmgoyder

wings and things

Feb 4

Imagined conversation on Anthony’s 82nd birthday

by jmgoyder

Me: Happy birthday, Ants.

Anthony: It’s not my birthday.

Me: I knew you’d say that but I am one step ahead of you. It actually IS your birthday, because this is the date you were born; it’s just that you’re not here to celebrate it.

Anthony: I don’t think I would have been up for much of a party anyway. I looked like sh**  in that bed, and dribbling from both ends! How could you stand it?

Me: Have you stopped swearing – what’s with the sh**?

Anthony: Time and place, Jules.

Me: Anyway, I’ve been thinking about how this is but isn’t your birthday, so do you want to hear the good news or the good news?

Anthony: Don’t you mean….

Me: C’mon, left hand or right hand?

Anthony: Left – no, right.

Me [under breath]: Well you always got those wrong anyway.

Anthony: I heard that. So, hurry up with the good news. The excitement is killing me.

Me: Okay well the first bit of good news is that you will never be 82 because you haven’t lived that long. Isn’t that wonderful?

Anthony: If you say so, Jules….

Me: And the second bit of news is … oh bloody hell – heck … I know I’ve written it down somewhere.

Anthony [in deep baritone sing-song voice]: Memory begins to fade in the twilight years, awakening all our fearsome fears….

Me: Oh shut up … here it is. Okay, you listening?

Anthony: Voraciously.

Me: The second bit of good news is that – oh, actually this is a bit lame but….

Anthony: Go on.

Me: Well, it’s that I won’t have to watch you suffer and die a long, slow, cruel death.

Anthony: Good point, good point. I actually have some good news for you too, Jules.

Me: Am I going to win lotto?

Anthony: I don’t know.

Me: Well, what’s the point of being dead and omniscient?

Anthony: My good news is this countdown thing they have here. It’s a bit complicated but ….

Me: Let me guess, you go backwards in time, right?

Anthony: Sort of.

Me: What a lot of rubbish!

Anthony: Wow, you sound like me!

Me: Well, you sound like me!

Anthony: It’s probably just that you’re getting our voices mixed up with each other in your head.

Me [Sighing]: Probably. This has evolved into quite a complex creative writing exercise. I mean writing to you, talking to you, makes sense, psychologically, but re-capturing your voice is surreal because it’s as if it really is you speaking.

 

Anthony: Don’t overthink it Jules – just go with the flow. But I’d rather be referred to as a voice, not a bloody creative writing exercise.

Me: Aha! You swore. Well thank God for that. You sound like you again, birthday boy. I miss you.

Anthony: I know. But you are going to flourish.

Me: See this is what is so disconcerting; I have never heard you use a word like “flourish”!

Anthony: It’s mentioned in Ming’s psychology diploma manual, on page 27. Actually the term “flourish” is repeated repeatedly throughout the course….

Me: Yes, I know, and it’s not a bad concept – much better than just surviving. Oh, I love talking about this kind of stuff with you, Ants.

Anthony: You are so sweet, Jules.

Me: So do I keep on chatting with you like this until the grief subsides or what?

Anthony: Do whatever you want, Jules. Play it by ear.

Me: I am so relieved I didn’t have another meltdown today.

Anthony: Why would you have a meltdown?

Me: Because it’s your birthday, and you’re dead, and I’m grief-stricken, you beautiful idiot!

Anthony: Steady on … that’s right, but we’ve already realised that there are at least three things that are good about me not being there for the occasion. I’ll talk to the countdown people and get back to you but in the meantime you could think of this as my 82nd unbirthday ….

Me: …. for want of a better ….

Anthony: Yes, and Jules?

Me: Yes, Ants?

Anthony: You mentioned lotto earlier ….

Me [excitedly]: YES?

Anthony: Money isn’t everything.

Me: [groaning with chagrin] OMG I can’t believe I’ve ended up married to some sort of weird angel/ghost/imaginary friend hybrid!

Anthony: And one with such exquisite musculature.

 

 

 

 

 

Alzheimer's Disease; Dementia Anthony banter death death and dying dementia depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' My published writing nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Wings

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Jan 31

Imagined conversation 8

by jmgoyder

Me: I’ve decided to go on a health kick – exercise every day, only eat natural foods – I’m even sprouting mung beans again.

Anthony (yawning): The deja vu is killing me.

Me: I’ve even started using those weights of yours – you know the red ones that were in your nursing home room.

Anthony: You mean the ones I used to pretend I thought I was good at?

Me: Yes, I mean no. Wait a sec. I thought I was the one who was pretending you were good at it.

Anthony: Jules?

Me: Yes?

Anthony: I may have had a spot of dementia, but I wasn’t a complete fool.

Me: I wasn’t saying that and you know it!

Anthony: About your health kick….

Me: What about it?

Anthony: Long may it last.

Alzheimer's Disease; Dementia Anthony banter death death and dying dementia depression Family food Friendship Grief Happiness Humour joy laughter lonely LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Uncategorized

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Jan 29

Imagined conversation 7

by jmgoyder

Me: It’s 2am and I can’t sleep.

Anthony: 2.09am to be precise.

Me: You’re quick!

Anthony: Don’t eat too many of those cherries or you’ll get the runs.

Me: I see my psychologist later on this morning.

Anthony: Why the hell do you think you need to see a psychologist?

Me: I think that’s pretty obvious, don’t you?

Anthony: What a lot of rubbish. It can’t be that bad, Jules.

Me: It isn’t as bad as it was but, oh, you wouldn’t understand. You’re lucky you’re the resilent type. Anyway, I’m going to try to go back to sleep. You would love these cherries!

Anthony: What are they a kilo now?

Me: A small fortune!

Anthony: Hmm, they’re free here. Actually everything’s free.

Me: Ha – I bet you like that!

Anthony: Too right.

 

Alzheimer's Disease; Dementia Anthony blogging death death and dying dementia depression Family food Friendship Grief Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' My published writing nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE

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Jan 28

Imagined conversation 6

by jmgoyder

Me: Why did you un-grip my hand from yours just before you died?

Anthony: You were hurting my hand.

Me: I was worried!

Anthony: I know.

Me: Actually I was terrified.

Anthony: Well I wasn’t, so don’t worry about that.

Me: That’s when I left your room to talk to Ming about what to do if you died in the night. Like, whether to ring him straight away, or what.

Anthony: Oh I didn’t know that.

Me: The doctor said it could be hours or days – did you know that?

Anthony: No, because you were all whispering, whispering, whispering….

Me: Oh, sorry, Ants. I just didn’t want you to hear that you might be dying and get scared.

Anthony: I wasn’t scared, just bloody uncomfortable. And Jules?

Me: What?

Anthony: It was easier to die with you out of the room.

Me: I thought that was one of those myths.

Anthony: I didn’t mean to hurt your feelings.

Me: No, it wasn’t that – it was just the shock. I was all ready to spend another night in the nursing home with you so I could get my head around you dying. I even had a DVD to watch. I felt – feel – so cheated somehow.

Anthony: Aha – gotcha!

Me: So you tricked me?

Anthony: Yep.

Me: But why?

Anthony: I didn’t want you to see me take my last gurgling breath; it was a bit embarrassing. And I didn’t want you crying all over me.

Me: But I did cry all over you!

Anthony: Oh. Sorry. I was long gone by then.

Me: What do you mean ‘long gone’? We were only out of your room for a few minutes!

Anthony: Time just seems different now.

Me: I just want my hand back in yours.

Anthony: Well you could have arranged to have it cut off and mummified, I suppose.

Me: Argh!

Anthony: You worry too much, Jules.

Me: I’m so tired from grieving.

Anthony: Well, I was a magnificent specimen of a man so it’s no wonder.

Me: Thanks for the laugh, Ants.

Anthony: You gotta laugh, Jules. Anyway, how’s your mother? Is she still making those blanketty things?

Me: Yes, but probably not as enthusiastically as she was when she was sitting with you.

Anthony: Good on her. She’s a good soul.

Me: ‘Soul’? Since when do you use words like ‘soul’?

Anthony: Since I died.

Alzheimer's Disease; Dementia Anthony banter death death and dying dementia depression Family Friendship Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' My published writing nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Wings

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Jan 16

Getting wise to grief

by jmgoyder

I know that this is going to sound weird but grief is actually quite interesting.

I have been trying so hard to outwise/ outwit? the effect that this terrible grief is having on me. Okay, so the grief itself is a given and it’s understandable that I would be grieving for Anthony; that’s not pleasant, but it’s okay.

It’s how this grief translates into everyday life that is the real challenge. For example it is so tiring to be so tired of grieving, to be so tired of my own tiredness, tired of myself, tired of crying, tired of not being able to cry, tired of trying so hard not to be tired.

Grief is exhausting! I can just imagine telling Anthony about this and it makes me laugh because he would have rolled his eyes and sighed at my ridiculousness in trying to figure grief out. He wouldn’t have offered clichés like ‘move on’ or ‘you need to get out and about more’ and I don’t even think he would have said, ‘I wouldn’t want you to be so sad, Jules’. Instead, he would have said ‘do what you want, Jules’ and I know for sure that he would be secretly chuffed that I miss him so much. His heavenly ego will be getting a rush.

Anthony adored me. Even though it took him over a decade to realise it, he made up for lost time very quickly and I think I am one of the luckiest people in the world to have had such a fantastic marriage. I wasn’t this long-suffering carer of a sick husband (which is probably the perception – you know, the dutiful wife); I was cared for by him. Every time I saw him in the nursing home, the joy in his face was the joy I took home with me, no matter how poignant.

Grief is often seen as the loss of someone you love and of course this is true but isn’t it also true that you miss being loved? I do. It’s not that I want to be adored per se (despite being a blogger – paradox alert); I just want Anthony’s adoration.

And, like a kid outside a closed candy shop, that’s my face pressed against the reflection of the impossible.

Grief is interesting. And so is getting wise to it.

 

 

Alzheimer's Disease; Dementia Anthony Australia blogging death death and dying dementia depression Embarrassing moments Family food Friendship Grief Happiness Humour laughter LOVE STORY Marriage Menzies Goyder/ 'Ming' My published writing nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Wings

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Jan 15

Facing forever

by jmgoyder

In amongst what I thought was old paperwork, I found a recently purchased ‘Reflections Journal’ in which I had written the following:

Monday 21st August, 2017: The gift of breath is a beautiful thing.

I don’t know why I wrote that now. I was probably deciding to go on a new diet, planning an exercise program for myself, or else thinking about thinking about the benefits of meditation.

People like me (with elderly loved ones in nursing homes with diseases like Parkinson’s and Dementia) should be more prepared for Death.

I wasn’t.

Wednesday, 23rd August, 2017: Anthony died. I didn’t write this in the Reflections Journal; I just wrote it in my day-to-day diary because I couldn’t find anywhere else to write/think/say it. I listed ‘Anthony died’ with a shopping list of milk, bread, apples and bananas.

After so many years of nearly dying, my beautiful husband did actually die and, even after nearly six months, I can’t quite fathom this.

I am not in denial and I know Anthony is dead. I miss him to the point of debilitating depression but, at the same time, I can feel some sort of weird, encouraging, wave; he was so resilient, and lackadaisical, and a master of calmness, easy-goingness, acceptance. Ming and I are so lucky to have this legendary husband and father to teach us about fortitude.

Ming and I have this new tradition of having breakfast together and, this morning, we talked about Anthony. It’s my birthday and for years Ants bought me a silver bangle (which I would choose!) It didn’t seem necessary this year; there didn’t seem any point.

So I didn’t buy myself a pretend gift from Anthony; it just didn’t sit well with me because he was so ill for so many years (even before the many years in the nursing home) that I just thought enough was enough. I did, however, buy myself an on-sale Oroton handbag that Anthony would have approved of.

The idea of forever (without Ants) is bleak, yes, but it is also an inevitable challenge that I am willing to meet. As a small child, I wanted wisdom so I guess this is it!

Alzheimer's Disease; Dementia Anthony blogging death death and dying dementia depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Western Australia

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Dec 19

Terribly happy

by jmgoyder

About a week ago, I suddenly experienced an oxymoronic sensation of intense happiness and intense sadness in the same exact moment. At the time, I thought it was a fleeting thing but I was wrong; it has continued to be a constant sensation, ebbing and flowing in its intensity somewhat, but always there, here (in my throat, in my chest, or in my stomach).

This terrible happiness is mostly a kind of flutter – a mixture of dread and excitement that pushes, from inside, against my ribcage, like a moth caught in the dark light, wanting, but not wanting, to fly free.

At first, I thought this sensation was impossible, so I googled the question “is it possible to feel happy and sad at the same time?” I was surprised to find that many others had also wondered about this paradoxical sensation. Most people, however, expressed the opinion that it was impossible.

I felt smug, knowing by then that it was absolutely possible because I had it – this terrible happiness – and I had had it for several days. It’s there, quietly, underneath my day-to-day doings, but I can also conjure it into a louder refrain and every time I do this, Anthony appears in the rear vision mirror of my heart and he is young and vibrant and laughing his approval.

The grief component of this terrible happiness is tear-drenched, but the happy component of this terrible happiness is buoyant, curious, unafraid and very, very surprised!

DSCN0928

Wishing everyone a wonderful Christmas and new year, especially those who are going through difficult times. I hope to get back to reading others’ blog posts soon, and I am very grateful for all of the support Ming and I have received since Anthony died. Thank you.

 

Alzheimer's Disease; Dementia Anthony death death and dying dementia depression Family Friendship Grief Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Wings

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Oct 29

Ming’s honesty

by jmgoyder

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.

 

Alzheimer's Disease; Dementia blogging death death and dying dementia depression Grief Happiness Humour joy laughter LOVE STORY Marriage Menzies Goyder/ 'Ming' nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE

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Sep 26

Getting back on my feet

by jmgoyder

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.

 

Alzheimer's Disease; Dementia Anthony death death and dying dementia depression Family Grief Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' nursing homes Parkinson's disease Parkinson's disease dementia Wings

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Aug 31

Anthony’s funeral

by jmgoyder

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.

 

 

 

 

 

Alzheimer's Disease; Dementia Anthony blogging death death and dying dementia depression Family Friendship Grief hallucinations Happiness Humour joy laughter lonely LOVE STORY Marriage Menzies Goyder/ 'Ming' My published writing nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Uncategorized

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