jmgoyder

wings and things

Making friends with grief

I have learned so much about grief through my imagined conversations with “Anthony deceased” (as he is described in some legal documents I had to sign the other day) that I thought I’d share them here.

One of the things I’ve discovered is that if I wake up to what I know is going to be a day of acute grief, there is no point trying to evade it (one of the things I was trying to do). Now what I do is sort of greet it kindly, not exactly in a “Hi Grief” kind of way, more in an accepting way, almost as if it is a friend. After all, my grief about Anthony’s death, personified, has more empathy for me than anybody else possibly can.

In a way, the imagined conversations are a way of addressing Grief directly if that makes sense (if you are not sure what I mean then rest assured that I’m not really sure either!) Every time I write one of these conversations, even the ones that were a bit contrived and didn’t really flow) it helped somehow. I fought against doing it for awhile because I didn’t want people to think I was going nuts. I also didn’t want to become dependent on these conversations on a daily basis, to the preclusion of other more ‘normal’ daily activities. But I don’t care about either of those things now. Writing these conversations has often been fun and is sometimes quite enlightening.

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During a grief workshop I attended recently, Pat Kelly, a grief counsellor https://www.facebook.com/pat.kelly.18488169, pointed out that there is no one way of grieving. I found that very comforting in light of the imagined conversations I was/am writing because these have helped me more with my grief than any amount of kayaking, motor-scootering, cycling, swimming, socialising and volunteering (yes, I have been busy) have. All of these activities have helped enormously of course, but writing down conversations I imagine having with a now-well Anthony has been magical.

In re-conjuring Anthony’s voice as a younger, fitter man I have remembered all sorts of wonderful things that I’d forgotten – our holidays down south when Ming was young, our debates about whether animals went to heaven, our private jokes, our delight in the moonflowers blooming, his passion for motorbikes and classic cars, the parties, and so on. I’ve remembered poignant moments and sad times as well but mostly ‘talking’ with him has been a joy. I used to tell him everything even when he became less able to converse so, during the nursing home years, I sort of forgot about the way we used to talk and talk and talk. Remembering these conversations has been like a gift.

Making friends with Grief in this manner reminds me of how I ended up making friends with Dementia. In doing so, a lot of the associated fear diminished and a feeling of wellbeing returned.

I suppose since it’s my grief, after all, I am kind of making friends with myself again too. I’ve been working on that anyway with my wonderful psychologist, Daniella Princi https://www.facebook.com/yourintrinsiclife/ whose program has provided me with all sorts of interesting tools for living my life the way I want to live it.

One thing I know for sure is that Anthony would be proud of the way I am coping with his death and he would be chuffed to think I am pretending to converse him still. He was always very accepting of my idiosyncrasies, as I was of his.

Me: I’ve sort of made friends with the grief now, Ants.

Anthony: Good on you, Jules.

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6. The most beautiful word: Yes

“Could you just put that skeleton onto the hose?”

“You are always doubling and tripling and doubling.”

“There he is – that little bastard – see? In the corner. With the horse nose.”

“I don’t want to be in this school anymore.”

“This is the most wonderful pub!”

“The dogs need to be let out. Do it gently with the first ones. We have too many.”

“Does the congregation know that you found the bodies?”

“It was a pirate ship and those kids kidnapped me again.”

“See this thing? [often his knee rug]. “Can you loop it around these things?” [his hands.] “Yes, good, that will stop the rain from getting into the crevices.”

The above are just a few sample statements made by Anthony over the last several years. There is a context to some of these statements which I will elaborate on later in this book, but most are uttered spontaneously and sometimes with what seems a subdued desperation.

If you are caring for/or about someone with Dementia who is close to you – a spouse, parent, friend – it can be extremely difficult to know how to respond. For example, it can be very tempting to counter what seems like nonsense with logic, like:

There are no bodies, or a pirate ship. It’s not even raining! We only have two dogs, the hose is fine, we’re not in a pub or a school – we are in a nursing home! Who are these kids you keep talking about? What the hell are you talking about? You are paranoid, you are delusional and I can’t cope with this nonsense anymore. Please, Ants; this is so unfair on me. Pull yourself together!

I’ve highlighted the above to emphasise my frustrations over the years with Anthony’s gradual transition into the confusion of Dementia. Of course, I am not proud of my impatience with him but, early on – especially during the last year Anthony lived at home and the first year of the nursing home – my moodiness was acrobatic and just as unpredictable as his confusion.

The only thing that remained a certainty for us during these tumultuous times was our inviolable love for each other. Anthony’s reluctance to marry me all those years ago stemmed from his anxiety about the age difference (23 years). He didn’t want to burden me with his old age. I said I didn’t care but for some reason, despite my nursing background and my PhD research about Alzheimer’s Disease, I never once considered that one day Anthony would not only be old, but also very sick.

We were married in 1993 and at that time Anthony was fit, robust and full of energy – a passionate dairy farmer. Neither of us could have anticipated that in the first year of Ming’s life, Anthony would succumb to kidney cancer. I can remember taking baby Ming into the hospital to see Ants in between two surgeries, the first to remove a tumour from his left kidney, and the second to remove the whole kidney. Our tears then were not just about the trauma experienced and the idea of cancer, they were also about Anthony being advised not to ride a motorbike anymore.

Anthony was only 58 back then (the same age I am now) and he loved riding motorbikes. Dairy farmers don’t have much time for hobbies, but this was his and, in retrospect, I now see that this would have come as a terrible blow for Anthony. The cancerous kidney was gone, yes, but this experience altered things in a forever way.

Ming had his first ever asthma attack in that hospital room. My mother took him into her arms while I rushed to find a nebuliser and Ventolin for Ming.

Later that week we brought Anthony home – wan, pale, diminished, and so weak. But he soon got better and went back to milking the cows, enjoying being a father, and loving me with a fervour that devastated me because I could already see the writing on the wall. I’m not a scientist or a psychologist but I do believe that our kidney cancer year somehow made Anthony vulnerable to the many illnesses he has contracted since then.

Now, nearly two decades later, Anthony often reassures me that he is getting better.

Me: YES.

 

 

 

 

 

 

 

 

 

 

 

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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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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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Values

Ming and have both sought psychological help over the last few years and one of the most difficult questions to answer is “what are your values?” I think this is a very tricky question, but an important one. It is also a question that I have found extremely challenging to answer.

Stereotypical answers might be: health, family, financially okay, great relationships, good job, political stability, beautiful kids, long life etc. but these are too vague and I don’t like my own vagueness.

Perhaps the question should be rephrased to “what do I value?” This turns the noun ‘value’ into the verb ‘value’ and, in my opinion, makes the question easier to answer. For example, I know what I value most, whereas I can’t quite pinpoint what my values are.

What do I value most?

  • Kindness (the giving and receiving of);
  • My son’s growing wisdom;
  • Anthony’s smile;
  • Authentic relationships with family and friends;
  • Humour;
  • My ability to write about dementia;
  • The new puppy, Pip;
  • Honesty; and
  • Salad.

I haven’t been very good lately at looking after my physical, psychological and emotional health but, like many, I baulk at self-helpy stuff. But there is nothing wrong with self-help! After all, the best way of helping others, which is something I feel passionate about, is to get yourself on track first, surely.

Ming comes home tomorrow from a 6-day intensive beginning to a diploma in psychology which he will complete in around 15 months. He seems to have found his niche and I can’t wait to hear about all of it; we have already had some fascinating phone conversations.

Even pre-dementia, Anthony would never have understood Ming’s passion for helping people; nevertheless he would be so proud if he understood. Often Ants still thinks Ming is a toddler so when this great big man steps into the nursing home room it can be a bit confusing.

Ah yes – other things I value:

  • Laughter;
  • Still being in love; and
  • Ming.
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New kid on the block (and the reason I haven’t been blogging lately)

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Well, here she is – Pip – a miniature schnauzer who is just eight weeks old. Once she has had her next vaccinations, I will be able to take her with me to see Anthony and other people.

The story behind her name: years before Anthony and I were married, I lived in a little cottage a few kilometres from his farm. I was undertaking my first year of university studies and feeling, I guess, a bit isolated. I was also suffering a severe case of ongoing unrequited love for this beautiful but idiotic older man who, instead of proposing, bought me a miniature dachshund puppy that we called Pip.

That Pip was the most beautiful gift, and the best friend I had ever had until she died many years later.

I was recently reminded (via a photo) of the special bond I had with that first Pip and how her company helped me through doing all of those assignments in that small cottage all alone. I was only in my 20s then and terribly naïve; I couldn’t understand why Anthony didn’t love me back. It is only in retrospect that I realise how taboo it would have been for him, a middle-aged farmer, to contemplate a romance with me.

So, instead, he gave me Pip.

And now we have a new Pip and I am, once again, not alone.

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Poetry and sentences

When a little parrot you have never seen before

trips clumsily over the fragment of a mung bean sprout

you have placed on the balcony ledge

of the resort you have brought your mother to, to celebrate her 82nd birthday,

you hold the rest of the mung bean sprout in the palm of your outstretched hand

and smile when that little parrot takes it and flies away,

its wings flapping once

like a wink.

 

That sentence was too long and I don’t know if I have punctuated it properly for poetry. But I do remember advising my creative writing students to use commas when they felt the need.

 

Ming, Meg and I spent some time together at this wonderful resort and, thanks to Wifi, my mother was able to receive the multiple birthday messages from family and friends. We all thought the little parrot would come back as it seemed so tame. Having taken multiple photos of a similarly tame-seeming kookaburra, it seemed inevitable that the little parrot would return for a photo shoot – ha.

 

I had seen Ants and fed him his lunch on the day I drove us down south to the beautiful resort. My mother and I were supposed to check in at 2pm but I was delayed because Anthony was in ‘agony’ (his unusually dramatic words, whispered to me) due to constipation. Once that the situation was remedied and he was back in his armchair and comfortable, I told him I was taking my mother out for lunch for her birthday.

Anthony: I think I might stay here.

Me: That’s fine, Ants. I’ll see you after the birthday lunch.

48 hours later, my mother and I arrived at the nursing home in time for me to feed Ants his lunch again. He didn’t appear to realise that I had been gone for longer than a day which was a blessing to me.

 

During our time at the resort, my mother and I basked in the luxury of the beautiful view, the wonderful wineries, the gift-shops where I found unusual wine glasses (my latest hobby). My mother found a fantastic onyx ring which absolutely made my day. And we walked through the rather magical gardens – just us the first time, then with Ming who came down laden with three varieties of Bailey’s Irish Cream – his birthday present for Grandma.

 

I saw the kookaburra once more, from a distance.

My mother recollected how much I cried and cried after placing Anthony in the nursing home and I admitted that I didn’t remember this phase. I know I can look back on my blog and re-see that pain but I don’t want to because it is all fine now; Anthony, Ming and I have accepted that it is what it is….

Happy birthday, my beautiful mother – thank you for your support and love for all of us, not just me. I have learned the most important life lessons from you – to be ready for anything and to always, always, get back up from a fall.

And I know that parrot’s address

like a wink….

 

 

 

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Age

Anthony has always had a wicked sense of humour so the other day, when I asked him if he knew how old he was, I thought he was joking at first.

Me: How old do you think you are?

Anthony: 16.

Me: Are you serious or having a laugh?

Anthony: Serious. We just came to the farm.

Me: I thought you were 23 when you came to the farm.

Anthony: No, I was 16.

Me: So how old am I?

Anthony: 52?

Me: So how can I be 52 if you are only 16?

Anthony: I’m young.

Me: Sorry to have to break this to you, Ants, but you are actually 80.

LONG PAUSE

Anthony: What rubbish!

Me: No, you really are 80, Ants!

LONGER PAUSE

Me: Have I upset you?

Anthony: A bit.

Me: Oh, Ants, I’m sorry but you really truly are 80.

Anthony: I think you mean 60?

Me: Well you only look 60. You don’t have any wrinkles.

Anthony: I’m not like those old men in the ballroom.

Me: Not at all.

Anthony: I’ve never felt so fit! Look [patting his flat tummy].

Me: That’s why I’m so proud to be your wife.

Anthony: Well so you should be.

 

 

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Bump on the head!

A few days ago, I bumped my head rather dramatically. I’d stooped to pick up some clothes from the bathroom floor and stood up suddenly, forgetting to avoid the corner of the towel cupboard which is positioned above the sink. SMASH!

The lump on my head was massive to begin with, literally the size of a goose egg, but it has now shrunk to the size of a golf ball. When I had my hair cut the other day, my hairdresser was extremely impressed. She showed me the lump in a mirror and  described the bruising around the lump in rather gruesome detail. Obviously, she had to be really careful attending to my hair.

Yesterday I must have been having one of those attention-seeking days because I kept getting the nursing staff to feel my lump. I did the same thing this morning and got the same ‘ooh-ahh!’ response from various staff which was, of course, very satisfying.

The only two people who were unfazed (and remarkably unsympathetic) were Ants and Ming.

Ming: Get over it, Mum; it’s just a bump on the head!

Anthony: You need to be careful, Jules, you’re not a spring chicken anymore.

Anyway, since bumping my head, I have been really slack with both the writing and the reading of blog posts. I have also become  quite slack with cooking, cleaning, gardening, anythinging, but have also become adept at sleeping and watching netflix. Having armed myself with a fitbit a couple of weeks ago (between the asthma and the head bumping) it has been a bit discouraging to find that I have only walked about eight kilometres in as many days.

Once the lump from the bump subsides, I hope to become a more active blogger again but, in the meantime, I have a bit of a headache.

 

 

 

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Back to the birds!

I was going to write something poignant, but I am too fascinated by why these two pigeoney-dovey-looking birds keep rejecting my offerings. For ages they have been visiting two fence posts just outside my front window. So I left crumbs (which a clever crow immediately took), then I put nuts out on the top of those two particular fence posts.

During the night it rained so I guess the nuts are now a bit soggy. The two pigeon-dovey-looking birds seem almost to be afraid of my strange offering. I will have to be more subtle and I am not gifted with subtlety ha!

It is such a great relief to let go of the poignancy, to charge my camera’s battery again, to watch the birds from my front window – the most beautiful view – or just to sit on the front veranda watching the sky’s birds at near-dusk.

 

 

 

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