jmgoyder

wings and things

Imagined conversation 7

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.

 

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Imagined conversation 6

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.

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Getting wise to grief

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.

 

 

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Facing forever

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!

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Terribly happy

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!

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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.

 

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New beginnings

Every day, I smile back at my favourite photo of Anthony which was taken many years ago when he was well. This is the photo we chose for the bookmark distributed to those who came to his funeral, the one I often put into the back pocket of my jeans when I go out. Luckily I have a few spares because I accidentally washed one of them with my jeans the other day and Pip has dog-eared another one with her sharp teeth. FullSizeRender

Another new beginning: today I got to meet my newest great nephew, Archer, beautiful second son of my niece Ashtyn and her husband Gordon. He is such a winner! His big brother, Spencer, is equally adorable.

Archer with Julie

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I love them.

But something else new seems to be happening to me; I have regained that curiosity about the future that I experienced fleetingly not long after Anthony died. It’s a very simple curiosity and consists of doing deliberate but simple, rather mindless things that are somehow meditative and calming, like the jigsaw I have begun, and cooking new, interesting recipes. The curiosity comes in the form of the question: “Will I be able to do this?” And because these activities are so simple and enjoyable, the answer is, of course, “yes”.

Small steps I guess – a kind of hop-skip-and-jump into each new tomorrow of Anthonylessness, his smile of encouragement somehow more real now that I have lost the real thing. He was always so proud of me.

Standing on a slippery rock, with imagined wings preventing me from falling, on the brink of a new beginning, almost smiling again.

Beginning again

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Dementia’s grief

Despite the fact that I am plodding rather clumsily through my grief about Anthony’s death, I still retain a fascination with Dementia and its impact on those who have it. So, yeah, it isn’t just about me and my own grief; of course not!

It has only just struck me now that Anthony’s increasing confusion over the last several years was exacerbated by his grief about this confusion. He never seemed to know he was confused because the dementia was so gradual and, again, I think this was a blessing. However, there were times when he did understand that something was wrong.  I always reassured him of course but every now and then he would give me ‘the look’ as if to say, “do you think I am stupid, Jules?”

The love, longing and anxiety I have felt for so many years now was probably exactly the same for Ants but he had forgotten how to express it. He was as lonely for me as I was for him; after all, we had known and loved each other for 40 years.

My point here is that people with dementia are not just ‘people with dementia’. In other words, there is a whole swirling, twirling world of emotions and experiences that preceded the dreaded diagnosis.

Anthony’s grief on entry to the nursing home was palpable and it nearly destroyed us emotionally, but we did get through this heart-breaking decision all those years ago. Ming barely remembers as it was the same week he had his first surgery for scoliosis.

But Anthony put Ming’s health first and I will always be grateful for how he knowingly sacrificed his own emotional well-being for the sake of Ming. Despite being in the early stages of Dementia, Ants did know that respite in the nursing home might evolve into permanent care, which is exactly what happened.

I can hardly bear to think about how grief-stricken Anthony must have been at the time, despite his dementia-induced confusion.

And I think it is worth re-emphasising here that people with dementia also suffer grief.

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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: 3

It was the three counselling + guided meditation sessions with Karen that most helped me to take a hesitant step forward. In the first session, I explained that I felt trapped behind the bars separating my life with Anthony from my life without Anthony; in the second session, I had become curious about the future but was also wishing that I could have had one last conversation with Anthony. Karen suggested writing him a letter in the journal I’d been given on arrival. I did this and brought the letter to my last session, read it out to Karen, and cried.

One of the things that struck me about this exercise was that it was so different from my writing to, and about, Anthony on my blog for so many years; the public speaking Ming and I had done recently; the death notice for the newspaper; and even my notes for the eulogy. This time, I was writing something intensely personal just to Anthony and it is comforting to know I can do this any time. Yes, I read it to Karen but she was like a sort of conduit between the grieving me and the curious me and, once I closed my journal, I felt safe in the knowledge that I had written something very private – just between Ants and me. I am very grateful to Karen for her compassion to me, and her wisdom, and how comfortable she made me feel during these self-revealing sessions.

So this is my last post (for the time being!) about the retreat but I have also written a  recommendation here: https://www.tripadvisor.com.au/Hotel_Review-g488330-d2700910-Reviews-KalyaaNa_Spa_Wellness_Retreat-Bridgetown_Western_Australia.html

I was so incapacitated by grief when I arrived at the retreat but I came home stronger, wiser and filled with gratitude and, yes, curiosity. On my drive home I got a real sense of Anthony laughing kindly at my antics, and wanting me to be okay.

I’m okay.

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