jmgoyder

wings and things

8. Carrot juice

Several years ago Anthony and I embarked on a carrot juice diet and we went through two juicers (warranteed and replaced) in our quest for better health. We did this for around two months until our skin took on a rather strange, yellowish hue and Anthony developed arthritic pain. At the time, I did a bit of research and discovered that an overabundance of carrots can actually be harmful so we gladly quit the carrot juice and laughed ourselves silly about what idiots we’d been.

Looking back to that time, I now think that perhaps Anthony was showing signs of the Parkinson’s Disease Dementia that has now pretty much paralysed him, physically and cognitively. I guess I was trying desperately to find a solution?

I am a great fan of cold-pressed juice but I also know that it takes a hell of a lot of carrots to make a single glass of this elixir and nobody in their right mind would ever eat that many carrots in a single day. Nowadays I make juice with the outer lettuce leaves most people throw away, a single carrot, an apple, and orange, and a bit of ginger. This quest for health has consumed me lately due to my recent battle with mycoplasma pneumonia; I need to be well again and it has taken so long to get better. The hospital doctor did actually include (in his written report) my suggestion that my illness might have something to do with grief but, in the end, that was dismissed, the evidence of the mycoplasma bacteria was found, and I was given mycoplasma-specific antibiotics.

Anyway, back to carrot juice; once I was out of hospital I decided to go on a health kick. I’d lost five kilos so fast that my arms were (and still are) wasted and (hilariously for Ming) still stick-like. The other day, I reminded Anthony of our carrot juice adventure and he smiled. He remembered!

Anthony: But it’s good now isn’t it?

Me: Yes.

Anthony: I prefer chocolate.

 

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7. “When do you get your soul back again?”

[As I prepare for the talk Ming and I will deliver at TEDx in Bunbury, I wrestle with challenge of being concise when I could talk forever about our experience with Dementia: Anthony’s unawareness that he has Dementia; Ming’s transition from anger to acceptance; and my own attempts to find and create meaning in our interactions. I want this 15 minutes to somehow make a difference in the way people in general respond to people with Dementia. Once again, the following is a draft of a chapter for the book, Dementia Dialogues and any feedback appreciated.]

7. “When do you get your soul back again?”

It was a few months ago and I was already attuned to our cross-purpose-ish conversations, where, for example, Anthony would mention a tractor and I would counter his tractor-anxiety with an exclamation about how sweet potato was in season again.

So, as I switched the television station from Dr Phil to the ABC news, Anthony did the exact same thing with our conversation:

Anthony: When do you get your soul back again?

Me: WHAAAAT?

Anthony: Your soul.

ME: But I haven’t lost my soul, Ants!

Anthony: That’s good.

Anthony is the least spiritual person I have ever known so his mention of my soul was disconcerting as I’m pretty sure I have a reasonably healthy one. Nevertheless it made me realise that inside the mind of a person with Dementia are all sorts of references to all sorts of triggers, both past and present. His mention of soul may have been a bit like me telling him that the power was out at the nursing home one day, i.e. there was no electricity. Hours later, we had this conversation:

Me: Are you angry with me, Ants?

Anthony: Of course not.

Me: Then why do you look so sad?”

Anthony: My power is out.

So maybe Anthony’s casual reference to my soul, as if it were something I’d temporarily misplaced, like a bangle or a scarf (which I lose all the time), was just him using one word, ‘soul’ for another, more tangible thing? After all, I don’t even know what a soul is!

Nevertheless, that soul conversation still resonates, still makes me wonder, and still compels me to keep on trying to continue these dialogues. Sometimes, when Ants is too sleepy, or confused, to answer my ‘yes or no’ questions, and he tries to tell me something that I can’t understand, I just say this:

Me: It’s okay, Ants. I can read your mind!

https://tedxbunbury.org/

 

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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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4. Lost for words

My visits to Anthony are often very silent and this is fine. The other day, as he was half-asleep in his broda-chair (armchair on wheels), I felt such a surge of love for him that tears filled my eyes.

At one point his own eyes opened properly and he said, “Jules?”

Me: I’m here, Ants. I love you so much!

Anthony: Yes I know.

Me: Actually, you’re supposed to say it back.

Anthony: Yes, I know.

Me: SO SAY IT!

He gave me his half-smile and said, “I love you Jules,” then drifted back to sleep.

Later on, when he woke again:

Me: Do you want me to stop saying ‘I love you’ all the time?

Anthony: Just for awhile.

Me: You want to sleep again. Am I that boring?

Anthony: No, you’re not boring.

Me: What am I then?

Anthony: Just slightly boring.

Me: How dare you!

Anthony: I didn’t mean it, Jules.

Me: So why are you looking at me so ferociously?

Anthony: DESIIIIIIIIRE.

Oh.

Any words I was about to speak were lost within my laughter.

Anthony’s half smile broadened to the best of its ability. The muscles in his face have been so affected by Parkinson’s Disease that he often appears to be angry or unhappy, so a smile is like gold. So one of my main goals for each visit is to somehow get that smile happening. When I can’t, I feel a bit defeated and ask for reassurance that he is okay. His answer is almost always the same but often uttered with a that masked facial expression.

Me: Are you happy, Ants?

Anthony: Always happy.

And once again I am lost for words at how accepting of our circumstance this wonderful husband of mine is.

 

 

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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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2. “Where is Mum?”

Anthony asks this question at least once a week and, because it distresses him, I have to be really careful with my answers. If I say she is fine and at home on the farm, he worries that she is alone and I have to reassure him that Ming is there with her.

This wonderful woman, Anthony’s mother, fondly called ‘Gar’ by family and friends, died over two decades ago. I adored her, was frightened of her (she was a true matriarch), and I was with her when she died at the age of  86. Her last words to me were, Will you look after Anthony? And, buzzing with all of the feelings that come with first love, I said yes.

I was a teenager, just 18, and Anthony was 41. My adoration of him was embarrassingly obvious to both Gar and Anthony. Gar encouraged it in a rather mischievous way but Anthony spurned my clumsy adolescent love-sick self, out of respect for my youth. It would be many years before he and I graduated from platonic to romantic.

Finally, at the age of 56, this workaholic, dairy farmer, best friend, bachelor, proposed. By then, I had steeled myself to imagine life without Anthony, but I had this absolute certainty about our son-to-be. And I was right. But I didn’t know that then.

Anthony’s proposal of marriage was almost too late as I was beginning a tentative relationship with another man – a kinder, younger, more generous man.  I was in my early 30s by then and thought it best to finally move on and away from Anthony.

Then, whammo, Anthony just came to his senses. It was so sudden and such a shock to hear him crying on the phone and declaring love. I had never known him to express such emotion so I was flabbergasted and cynical. But I got over that and said yes to the marriage proposal.

Gar had always encouraged it, after all!

Anthony: Where is Mum?

Me: She’s in the kitchen, making breakfast, Ants.

 

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Unloneliness, empathy and fatigue

Yesterday’s post about loneliness was, I realise now, not just about me. I had been to a carer support meeting in the morning, then to see Anthony at noon, then to visit some residents at a different nursing home in the afternoon. After I got home in the early evening, I messaged a couple of friends whose loved ones are in care.

In terms of volunteering, it was a great day but I guess I must have absorbed a little too much of other people’s loneliness (in the context of Dementia). The sore throat that I was trying to ignore did a little crescendo thing, reminding me to rest up.

The various talks at the conference gave me some insight into the concepts, and practicalities, of, for instance, empathy. Somebody used the phrase, ’empathy fatigue’ and I thought aha – so that’s why I keep getting sick.

However, when I looked this phrase up, I learned that empathy fatigue happens to people whose empathy resources have dried up due to fatigue. Oh! I guess I got that wrong because my empathy is still on full alert, but my fatigue is extreme.

The responses to my post about loneliness are a reminder to me that I am not alone in my situation. I am so grateful for this support because it helps me to support other people dealing with the grief and loss associated with Dementia.

Unlonely x

 

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Lonely

I used to brag to people that I wasn’t lonely, that I was comfortable with being alone, and comfortable with my own company. But, since Anthony has been in the nursing home – nearly six years now – I have experienced such a piercing loneliness, and a longing for him to be home again (impossible) that sometimes I want to howl like an abandoned, injured animal. We are on 100 acres of farmland so, with no close neighbours, sometimes I do howl. I try very hard not to do this in front of Ming but sometimes it just happens – the uninhibited grief, the howl of longing for the impossibility of Anthony coming back home, the absolute misery of our situation.

On the other hand, I am not willing to give in to this kind of despair and I am determined to continue to make myself at home in Anthony’s nursing home room.

I would never want him to be as lonely as I am.

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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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Magnificent

I am spending as much time with Anthony as possible before Ming and I go to Sydney for five days. Yes, anyone would think we were going to the moon for a year but I do worry, mainly because I was unable to visit Anthony for so long when I was in hospital. I know my mother will visit him every day (she is absolutely wonderful) but there is something quite visceral about the way he misses me that has nothing whatsoever to do with cognition.

It is more to do with the passing of time; the longer the gaps between my visits, the more he suffers the unspoken pain of simply missing me – just my presence.

Today, I stayed with Anthony for hours, feeding him his lunch in the common dining room where he often is now; taking him back to his room to half-watch Dr Phil, Master Chef and Judge Judy; him listening speechlessly to the rapid pace of the conversation I had with my mother when she visited; looking bewildered as I left, until I promised to bring more chocolate.

At one point (it was probably one of Judge Judy’s calmer moments), I said, “This is great, isn’t it, Ants.” I had purposefully put my hand between both of his, then tucked them under his knee rug.

“Magnificent” he said.

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