jmgoyder

wings and things

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.

20 Comments »

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.

25 Comments »

Agog

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Hands on!

Today, as I held Anthony’s hand in mine, he kept on bringing my hand slowly up to his mouth, then kissing it. This happened over and over and over again until it became hilarious for both of us.

Me: You are melting my heart, Ants!

Anthony: That’s as it should be.

Me: We never used to hold hands in the old days – it’s kind of weird – and I am getting a bit irritated. Sorry!

Anthony: Your hands are in bad shape. Mine have things on them [pointing to one of his thumbs and a finger where I could see nothing wrong].

Me: Does it hurt?

Anthony: No it’s wonderful.

Me: Oh, okay I think I get it. Well, you’re lucky – one hot day and I have the rotten blisters back [I developed a strange condition a few years back whereby perspiration causes this thing called pompholyx].

Anthony: You need to stop scratching them.

Me: Yeah, but it’s so itchy! Anyway stop telling me what to do. You’re lucky you have such wonderful hands.

Anthony: Yes, I do, don’t I.

Okay, so the above conversation was at around noon, then I met a friend for coffee. I got back to Anthony at around 2pm. The hand holding resumed but the conversation did a bit of a U-turn in the cul-de-sac of Anthony’s dementia. Instead of kissing my hand, he kept removing it from his and placing it very neatly onto the side of my chair.

Me: Why are you rejecting me?

Anthony: It’s in the way. Jules, can you take these off? [He raised his hands, palms-up to me.]

Me: So you want me to take your hands off?

Anthony: Yes!

Me: But why? I can’t remove your hands, even if I wanted to, Ants.

Anthony: They’re in the way.

Me: In the way of what?

Anthony: That boy.

Me: You mean, Ming, our son?

Anthony: Yes, that’s the one. Can he take these [again, offering his hands up]. They could join those two little sheds into one.

Me: I think that’s a fantastic idea, Ants and we should tell Ming as soon as possible. He and I already know what a fantastic farmer you are. Thank you!

Anthony: So when are we going home?

The wish to come/go home has, unfortunately, become a frequent topic of conversation lately, after about a year of Anthony forgetting all about this beautiful farm. I hate the moments of slicing lucidity in which he says to me that he wants to be back at home; I hate bluffing and promising this impossibility; and I hate my deception of course!

Anthony’s immobility, and other issues, make it impossible for me to bring him home, even for a couple of hours. I can’t lift him at all any more; he often requires two carers and a hoist.

He is, however, the most uncomplaining, resilient, beautiful person I will ever know and I am so proud that Ming has these attributes too.

Quite handy!

14 Comments »

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….

 

 

 

18 Comments »

Laughter

One of the best things about my relationship with Anthony is that we are usually on the same page when it comes to humour, AND we are both able to laugh at ourselves. Today, I was feeding him his lunch and this was our conversation.

Me: You like this chocolate mousse stuff don’t you?

Anthony: I didn’t always.

Me: Well you obviously do now – you’re like some sort of lizard with your tongue sticking out for every mouthful.

Anthony: Delicious.

Me: Okay well I have to go to work now (volunteer job) so is there anything you want?

Anthony: Your hair ….

Me: OMG yes, yes, yes, my hair is due for a trim – anything else?

Anthony: It’s a matter of urgency.

Me: Urgency! Are you kidding? My hair? How dare you!

Anthony: But your face is beautiful.

Me: Too late for that kind of rubbish, Ants – you’ve done your dash!

Laughter … the most wonderful, magical thing in the world.

 

 

 

 

 

 

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