jmgoyder

wings and things

I’m glad I believe in Heaven

I’m glad I believe in Heaven, Anthony, because you weren’t so sure yourself but apparently the gates were wide open anyway and there was a big crowd waiting to welcome you. As you walked towards them, your back straightened, and your grin returned, and your voice came back. When you reached for my hand, and looked for Ming, your mother explained that we weren’t there yet, your brothers and sisters embraced you, and my dad introduced you around….

In the twelve days since Anthony died, I have woken up each morning, forgetting that he is dead, and even forgetting that the funeral has happened. The empty feeling inside me is like an icy wind tunnel and I cannot seem to get warm. My mother and I went to the grave-side a couple of days ago and yesterday, Father’s Day, Ming and I thought of going but didn’t. The impulse to go and see Anthony in the nursing home comes and goes constantly as I forget, then remember again. The many, many messages of condolence have slowed to a trickle, the beautiful flowers sent to us are now wilting, and whenever Ming leaves for work I almost say, “Can you go and see Dad?” And yesterday my mother was undone when, after church, she had to head home instead of to the nursing home.

On the day of the funeral, Ming and I had arranged for a viewing – just for the two of us. My only reason for this was totally irrational; I just wanted to make sure Anthony was really dead. And even when I kissed his cold forehead and lips I kept expecting him to open his eyes. He didn’t.

Ming and I had picked wormwood from Anthony’s favourite hedge to be used instead of rosemary sprigs, and a melody Ming had composed played as people placed these on the coffin around the branches of camellia trees we’d also picked that morning.

My feet seem to have grown bigger because they fit perfectly into Anthony’s ugg boots which I am wearing now. I keep watching the funeral dvd over and over and over again. So this is the grief I have anticipated for so long, raw, relentless, like a terrible storm.

But gradually, softly – away from that person sobbing – I am picking myself up. The special camellia tree Anthony bought me began to flower the day after the funeral, the dogs are constantly by my side, and Ming is here.

I’m glad I believe in Heaven.

 

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13. Bittersweet

In recent weeks, Anthony is either in bed or in a broda-chair (armchair on wheels). It is a long time since he has been able to walk or sit in a regular wheelchair and, although he is able to weight bear to an extent sometimes, he is more or less bedridden now. I am becoming used to what is still a bit of a shock.

Yesterday, I visited in the late afternoon (something that I had intended to do more regularly – famous last words). He was in bed, looking very comfortable and content. I fed him his vitamised dinner which he gobbled, and some chocolate that I had brought with me. At one point he raised his hands underneath the blanket and they kept getting in the way of the spoon.

Me: Why are you doing that with your hands, Ants?

Anthony: Because I lost them five days ago.

Me: Oh! When did you find them again?

Anthony: Last night.

Me: Where were they?

Anthony: At the nun’s place.

Me: You mean Sister R?

Anthony: Yes.

Me: She’s amazing isn’t she.

Anthony: Wonderful.

We aren’t Catholic but we do have a very good friend who is a nun and she has blessed Anthony on several occasions over the years, so I put two and two together. The way Anthony’s memory works now fascinates me; it is fragmented and peculiar but sometimes wonderfully symbolic.

At around 6pm, he began to drift into sleep and, as I stroked his head, I felt a lurch of bittersweet emotion. I whispered goodbye and kissed him, thinking he was asleep.

Me: You are the most beautiful man in the world, Ants.

Anthony (murmuring): I know.

 

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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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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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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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Purpose

I have a new sense of purpose, having returned from the Happiness and its Causes conference in Sydney. Ming and I delivered a talk entitled “Dementia Dialogues” in which we described our experience of Anthony’s Dementia. I have already written about this on Facebook so will not repeat myself here.

The conference experience was both fascinating and enriching with an eclectic mix of scientific and experiential approaches to happiness. Kindness (both to others and ourselves), generosity and gratitude were recurring themes and Ming and I learned so much.

One of the best outcomes for me was the sense of purpose I now have in terms of writing the book I have been trying to write for so long, but didn’t know where to start. In preparing notes for our talk, I had unwittingly created a loose framework for this book and, since I only had time to convey some of the points Ming and I wanted to make, those notes are a great incentive.

My plan is to write a short-ish book, with very short, easily digestible chapters, about the strange and wonderful conversations I share with Anthony, Ming, carers, relatives and friends. In this sense I think that the title “Dementia Dialogues” will work and I plan to pitch it to Penguin publishers.

Instead of a rather vague sense of purpose, I now think I have something more concrete and this blog is a great platform from which to test my ideas. I’ll try to limit chapter drafts to 500 words and post on the blog from July 1st – hopefully two per week.

Several weeks ago, I told Anthony I wanted to write a book about him and he said “No”. When I asked why, he said something so interesting, but so poignant, that I was taken aback.

“Because I don’t exist,” he answered, cryptically.

At the time, I reassured him, of course, but I didn’t have that sense of purpose I have now; I didn’t have the right words, even for myself.

You do exist, Ants, and our ongoing story is my purpose.

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Happiness

In just over a week, Ming and I are off to Sydney to speak at a conference. Check out the link!

http://www.happinessanditscauses.com.au/

The title of our talk is – yes, you guessed it – “Dementia Dialogues”. I am hoping to convince the audience that it is still sometimes possible to derive, and give, great joy within the context of Dementia. Ming and I are simply going to cite a few examples of the funny and poignant conversations we share with Anthony. We only have a 15-minute slot, so our talk has to be succinct, a bit like a TED talk I guess.

I emphasised the word “sometimes” above because I am well aware that our own experience of Anthony’s Dementia is not necessarily like other people’s and I recognise how lucky we are to have a husband/father who is so resilient. The other day, when I got to the nursing home earlier than usual, and was able to feed Anthony his breakfast in bed, I asked him if he was comfortable and he whispered a booming “EXTREMELY!”

Anthony’s sanguine nature is a wonderful ‘plus’ when it comes to Dementia but every single person who has Dementia is just as individual as those of us without Dementia. Now that I am involved in support groups for carers, I have heard a fair few horror stories and I do remember our own horror story before Anthony’s admission to the nursing home. So I guess another point I want to emphasise in our conference talk is that the idea of placing a loved one in a nursing home needn’t be a tragedy.

I haven’t blogged for so long that now I’m rambling – ha! It’s good to get the words out. Now I just have to prepare for the conference – yikes!

 

 

 

 

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Pip, the therapy dog

Recently, I have been at a bit of a loss for words, not for any particular reason, just feeling quiet. Also I have been quite preoccupied with Pip, our four-and-a-half-months-old miniature schnauzer.

I am training Pip to be a therapy dog and we are now a few weeks into “puppy pre-school.” So far, she is very good at sitting for food but not very good at obeying any other commands although she is house-trained simply because she is an inside/outside dog; and luckily she chooses outside to do her business.

Pip is already relatively well-behaved in the three nursing homes I take her to, including Anthony’s. For the most part, I keep her on a leash but in Anthony’s room she will now settle on her own pillow on the floor near his armchair for a good couple of hours. I keep her pillow, a container of dog biscuits and a water bowl in one of Anthony’s cupboards. In the other two nursing homes, the joy I see on some of the residents’ faces, when they see, pat or even hold Pip, is beautiful.

Anthony smiles at the way I fuss over Pip and I keep hearing myself sounding like an old woman with a little dog (ha!) But, despite his initial reaction to her puppyhood “It’s just a dog, Jules”, he and she have now bonded.

Me: Do you love her, Ants?

Anthony: Well who wouldn’t, Jules.

At home, Pip is now a hurricane of energy; she races in and out of the house and terrorises Jack, our Irish terrier who is still so in awe of her that he stands back when I feed them both and only eats Pip’s leftovers!

Every morning, I am greeted first thing with a deep growl from Pip, which is her rude way of asking me for breakfast. The closer I get to the refrigerator, the deeper the growl. Ming and I are getting a lot of laughs out of this hilarious new addition to the family.

Apparently I can register Pip as a therapy dog once she has undertaken further training so I am looking into this.

So, even though I’ve gone a bit quiet lately, it’s an accepting kind of quietness. I found out the other day that Anthony is now a ‘full hoist’ which means he is unable to walk at all. I had assumed that he was still maybe able to walk, using the walker, in the mornings, but I guess I was a bit nervous to ask the question because I didn’t want to know(?)

Oh how much I wish I had made more of the last time I saw Anthony walk using his walker – that shuffle-sprint-stall that I have known for nearly a decade. It seems impossible that he would now be more or less bed-ridden but I am an idiot to not have seen this coming.

And, as I contemplate whether to cry or not, I see from the front window of what used to be Anthony’s mother’s bedroom – now my study – a black fur-ball of absolute joy racing towards the front door.

Yipping with delight, Pip enters the quiet.

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Dementia and deceit

I absolutely love the idea of fabulation (making up stories), especially in the context of Dementia. After all, if Anthony can tell me that there are calves frolicking outside the window of his nursing home room (not true), surely I, too, am allowed to fabulate. The only difference, I guess, is that I am doing it knowingly; I am lying on purpose in order to comfort him, to make him happy.

For example:

Anthony: I fixed all the fences and the trough leaks this morning.

Me: Is that why you’re so exhausted?

Anthony: Yes, and I rode the bicycle.

Me: How far?

Anthony: About 20 miles!

Me: Bloody hell, Ants, you are overdoing it!

Anthony: I know.

Me: Ming can do some of those jobs for you – he wants to.

Anthony: He’s too young, Jules.

Me: He’s 23, Ants.

Anthony: That’s someone else. Our son is too little.

Me: Well, when he grows up he wants to be just like you.

Anthony: Oh.

Me: Ants, remember that lotto ticket we bought last week?

Anthony: No.

Me: Well we won a lot of money.

Anthony: How much?

Me: Thousands! We will never have to worry about money again. Isn’t it wonderful!

Anthony: Are you sure?

Me: Absolutely, so I am going to take the money and run off to Hawaii!

Anthony: You would never leave me.

Me: Yeah, I was just kidding, Ants. So what do you want me to do with all this money?

Anthony: Put it in the freezer.

There is no bicycle, no money and very little reality to this kind of conversation but it helps! Sometimes I feel like an actor in a play where ad-libbing is the norm. My fabulatory conversations with Ants often resemble something Samuel Beckett might have written.

My attitude may seem controversial but, as a farmer, Ants has always been worried about money, so it seems logical to fabulate the idea that there is plenty. Why not? It is a comfortable lie and now he often greets me with the question of how much is in the bank account. If I told him that his pension was not quite covering his nursing home costs and that I was eating into my superannuation to survive, he would be worried.

I don’t want him to be worried and I love the way he responds to the news of our (fictitious) burgeoning bank account. I also love the way he is under the impression that he is still farming, and farming successfully.

Anthony: That was a good party.

Me: Which one?

Anthony: The wedding.

Me: Oh, yes, it was brilliant!

Sometimes I feel acutely the surreal experiences of having been privy to these fabulations that Anthony thinks have happened in reality. He doesn’t know that he has Dementia and he often doesn’t realise he is in a nursing home.

One thing that is absolutely certain in our relationship, and that is free of fabulation, is that we love each other very much.

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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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