jmgoyder

wings and things

Sundown syndrome

The other day a friend mentioned this so I googled it and am stunned because it explains what has begun to happen to Anthony every evening! Other terms used are ‘sundowning’, ‘sundowner’s syndrome’ and ‘sundowners syndrome’. Here is a link to one ‘take’ on this very real problem.

http://www.caring.com/articles/sundown-syndrome

Sundown syndrome is an offshoot of dementia and usually happens as the sun goes down and light turns to dark, but it can also happen at sunrise. Some theories suggest that it has something to do with the 24 hour ‘brain clock’ that responds to changes in light. Other than this it seems to be a bit of a mystery. A person with dementia may be calm during the day but become agitated in the evening, sometimes quite dramatically.

Symptoms can include things like agitation, restlessness, aggressiveness, increased confusion, hallucinations, paranoia and a whole gamut of ‘out-of-character’ behaviours. This is the best explanation I have found yet to explain the last few weeks of Anthony’s increasing bewilderment and misery in the evenings.

Sunset, for Anthony and many others, is not beautiful.

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Contingencies

A contingency is an unexpected or unpredicted event. I am sure there are deeper philosophical definitions but that’s who/how I see it.

So you cannot plan for contingencies because they just happen. I am learning how to be ready for them, to deal with them and to stop trying to figure them out.

Dementia is place where contingencies flourish, watered by leaking brain cells and lit by twilight. These contingencies are not funny or exciting like coincidences; they are cruel and cleverly shocking.

Over the last two evenings my phone conversations with Anthony have been disturbing as I described in yesterday’s posts.

So, later this afternoon, I am going to go into the nursing lodge and face this evening’s inevitable contingency with Anthony. We will have a small red wine with each other, I will make sure he eats his dinner (which he apparently refused last night), I will hug him and reassure him and I will talk to the staff and get their perspectives.

But I have a confession to make; I don’t want to do this because lately (despite the excursion out to the farm the other day), it is becoming an unpleasant experience for both of us. He makes accusations, begs to come home and sometimes rebuffs me – or else he clings to me, making us both weep when I leave to go home without him.

There must be a way of making this better – there must be. So many of my ideas have failed and, with each contingency, I have to rethink things again, over and over again, which is silly really because nobody can plan, organize, predict or be ready for a contingency.

And it seems self-indulgent to blog about a single situation when a hurricane had just devastated and killed so many, when millions are affected by ongoing wars, when children are being hurt, animals abandoned, forests dessimated – almost too overhwhelming to comprehend from my tiny little space of the here and now.

Once upon a time, Ants and I would have talked about these contingencies with gusto and passion because they were not our contingencies and we could philosophize from our coccoon of safeness.

Now we flutter, like moths with missing wings.

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Are you asleep yet?

Are you asleep yet, my beautiful husband?

Midnight approaches me with dark, unfamiliar claws, so I go outside to find some moonlight but it is pitch black out there and, when I can’t find the moon, I race back inside frightened.

The dogs are barking at a moonless sky but they will soon settle.

Are you asleep yet, my beautiful husband?

You said the other day that you just wanted to sleep wth me but you have forgotten that we have not slept in the same bed since the evening when you could no longer reach the height of the bed and I wasn’t strong enough to lift you into it, and we had to put you into the smaller, lower bed in what we always called the spare room.

I know.

I know you have forgotten those years of tortured, sleepless nights for both of us -, me in the big bedroom, you in the spare room but calling me, calling me, knocking on the wall with your walking stick until, finally I began to sleep in the other small, low bed in the spare room, so that I could help you during those moonful and moonless nights – to pee, to turn over, to be warmer, to be cooler, to get your knees inside the covers, to sleep….

Your dreams were terrifying and you would yell out in your sleepless sleep and I would lie in my bed next to yours hoping it would stop.

Is that what is happening now? Are you still hallucinating about the girl with the bleeding eye, the mob who are chainsawing all of your palm trees to death, the calves on top of the television, the phantoms in the dairy?

The peacocks are crying, crying, crying and their sound is a haunting lullaby.

Are you asleep yet, my beautiful husband?

Please say yes. All you have to do is whisper it and I will hear you, I will hear you.

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Love story 115 – Sedation

Before I became a lecturer in literature and writing, I worked as a nurse in nursing homes and I used to be disturbed by the amount of sedation given to people with dementia. Now I understand much more clearly why.

This evening the nursing lodge staff rang me so that I could speak to Anthony and he was, once again, agitated, confused and mumbling conspiracy theories about what ‘they’ were doing to him. Again, he didn’t know where he was so I tried to reassure him, spoke to the evening nurse (I now call her ’24/7′) who was by his side, then to him again, then got off the phone stunned at the rapidity of his descent into dementia.

Earlier in the day I had rung the morning nurse to discuss the evening confusion problem and she said they were going to get a urine sample because Anthony might have a urinary tract infection. I had wondered this myself as I already knew that these kinds of infections can send someone who already has a brain disease into crazyland.

But tonight, after the jumbled conversation with Ants, I waited until I had calmed down a bit, then  I rang ’24/7′ back to have a private chat and she told me the urine test came back clear.

This means that Anthony does not have a urinary tract infection.

This means that we are now facing what I already knew was coming (but Anthony didn’t), the dementia of Stage 5 Parkinson’s Disease. It has been lurking there for some time but now its jaws are wide, its fangs are sharp and it is out to get him.

’24/7′ told me he had refused his dinner, had become belligerent and was difficult to calm down.

We need sedation.

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Love story 114 – ‘Andony’

As a two-year-old, Ming gave much more of his affection to me than he did to Anthony. So, for awhile it seemed like I was the privileged parent. Sometimes I even worried (although somewhat smugly!) that Anthony might become jealous of the multiple kisses I received from Ming, compared to his own daily ration of one, maybe two.

But it wasn’t Anthony who became jealous; it was me! Why? Because, as Ming approached the age of three and began to acquire more and more words, I remained fixed in his vocabulary as ‘Mummy,’ whereas ‘Daddy’ became ‘Andony’.

My envy was made worse by Ming’s clear reasoning when I told him, rather shyly, that he could call me ‘Julie’ if he wanted to.

“But you’re just Mummy, Mummy – NOT Julie,” he said very definitely. He looked at me quizzically, obviously wondering if I understood or not.

“So how come you call Daddy ‘Anthony’?” I asked, hesitantly.

“Coz Andony is my bestest fren,” Ming said. Again, the slightly ironic frown.

I’m ashamed to say that my secret jealousy of the mateship between Anthony and Ming worsened over the ensuing weeks. Then, just as suddenly, it dissipated when one evening the brightness of their relationship clarified itself and I understood.

Ming was sitting on Anthony’s knee, and they were watching cartoons. I joined them, sitting across the room, and, out of the corner of my eye, I saw Ming deposit a series of soft kisses onto Anthony’s cheeks, then stroke his head with delicate, though bongo-style, pats.

It had been ages (a couple of days, I think!) since Ming had given me that sort of affection and I felt a mixture of yearning and bright, fluorescent, green envy.

I turned and caught Anthony’s eye. Ming saw the look and, perhaps thinking that I, too, wanted some attention, he tumbled off Anthony’s lap and toddled over to me. Well, it’s about time, I thought to myself.

“Mummy,” he whispered, climbing onto my knee, “I can ownee give you one kiss.”

“Why is that?” I exclaimed – a bit too forcefully perhaps.

“Because!” Ming said, alarmed at my tone but still with that wise-owl look on his face, “Andony is my bewful, bewful son.”

He kissed me benevolently once on the cheek, then hopped down and toddled back to Anthony’s lap, calling back to me over his shoulder, “You’ll be awight, Mummy, you’re a vewy big girl now.”

The day Ming was born

The three of us

The thing is that Ming has no recollection of these days. He only vaguely remembers running from one side of the room pictured above and flying into Anthony’s lap – constantly! He now calls Anthony ‘Dad’. He was glad not be home this morning for the excursion event.

For awhile I wrestled with myself about whether to force Ming to come with me to visit Ants more often but, as a friend recently pointed out to me, not many 18-year-olds want to spend time with their parents anyway so it’s not such a big deal. So I don’t push Ming anymore and I certainly don’t make him feel guilty about his disengagement from Anthony, and, fortunately, Anthony is content to see Ming occasionally or else speak on the phone.

So the ‘Andony’ days are well and truly over and that is okay because it has to be okay.

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The excursion

This morning, the nursing lodge bus came out at 10am with ‘the men’s group’. It was a great success!

Staff, residents and volunteers

Morning tea

Godfrey’s gang did their contortionist act but were outshone by an impromptu perfomance by the turkeys

Anthony and me

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Why didn’t I think of this before?

Every Thursday morning the nursing lodge has a bus excursion and Anthony usually goes. Last Thursday I arrived at the nursing lodge at around noon to be told that Anthony was still out and that the excursion was to Dardanup (our town!) They’d gone up to the hills just past our farm. So, when the bus returned and Ants was being helped back to his room by the nurse in charge of the excursion, I asked if it would be possible for the bus to come to our place and she said yes!

So tomorrow, they are coming here and I am so excited. The nurse said they might make it a semi-regular thing and I wanted to kiss her feet! This would be a stress-free way of getting Anthony home for a few hours and I am sure the other residents will enjoy it too. They always bring their own morning tea and there are enough staff for any toilet emergencies, so I am definitely in yeeha mode! Anthony seems to think it is a great idea too.

I have told the birds that they will have an audience tomorrow between 9.30 and 11.30am, so they are all practising for Godfrey’s contortionist competition.

Another contortionist

A competing peahen

Woodroffe thinks he will win the competition

Pearl will be performing in the pond

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Freedom

Anthony’s legs and little Ming.

Ming didn’t walk until he was 18 months old. There was no warning; he didn’t crawl or bum-slide or even stand first. He simply went from sitting to walking, to running, to running away, all in the space of a single day. (Actually, it was a single hour).

On that eventful day, I sat him on the grass as I hung out the washing. He liked to sit and play with the wooden pegs and would happily do so for ages. So I thought nothing of going back inside to make myself a cup of coffee.

I’d just filled the kettle when I heard a shriek and, terrified, I dashed outside, thinking, snake? spider? My panic increased dramatically when I saw that Ming wasn’t where I’d plonked him just moments ago. Unable to comprehend this, I stood stock still and listened intently. Another shriek, just behind me and I whirled around only to spot Ming hiding behind a tree adjacent to the clothesline and giggling with delight. And he was standing up!

“Ming!” I exclaimed, running towards him, at which he shrieked again and toddled away, his fat little legs wobbling with the unfamiliar movement. Stunned, I watched him take around 15 steps before falling gently onto his behind.

I rushed up to him. “You’re walking!” It was my turn to shriek with delight. I sat down beside him on the grass but he immediately got up again and began to run, his laughter filling the air.

And so began Ming’s tearaway phase. It didn’t matter where we were – at home, at the park, visiting friends, he would do just that – tear away, as fast as he could. This phase lasted exactly a year and nearly drove us insane with worry because if we weren’t holding tightly to his hand – something Ming hated – he’d be off! With a channel running through our property, and an unfenced yard, Anthony and I had to take turns doing ‘Mingwatch.’

Of course it was much worse if I took Ming into town to shop. He would not stay by my side for an instant, wanting always to dash away, looking for adventure. I was terrified he’d run onto a road or that I’d lose him in the supermarket crowd. Finally, Anthony and I agreed we needed to buy a child restraint.

This “leash” got us plenty of dirty looks (mostly from parents of clingy children, I thought jealously). And once, walking through a crowd of Japanese tourists with Ming straining desperately against the white leather harness, we became (much to my embarrassment) the subject of enormous hilarity, and curious pointing fingers.

Ming was nearly three when the leash was finally discarded. We’d all – even Ming – become so used to it that it came as a shock one morning when, harnessing him up for a day in town, he quietly said, “I’m gonna buy a new mummy for twenny dollars if you doan let me fwee [free].”

His tone was ominous.

I took the leash off tentatively. “You won’t run away?” I asked nervously.

Ming grinned acquiescence and willingly took my hand. “Thassa good mummy,” he said.

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Ghost train

Last night Ming and I watched one of those poltergeisty movies and we were so terrified throughout that it became funny and I couldn’t stop laughing! It reminded me of the ghost train incident of many years ago.

The memory still sits in my gut, raw, un-relinquished – a regret that I can’t rewind and delete. I comfort myself with the thought that all parents do heaps of things unthinkingly, unwisely – don’t they?

Tentatively, I reminded Ming about the ghost train the other day, and he giggled. Momentarily relieved, I assumed he was over it. But I couldn’t help noticing that his giggle was accompanied by a slight frown, a slight blanching of the complexion, even a slight stiffening of the limbs.

He was around three years old at the time. We were having a holiday in Adelaide, when we decided, on impulse, to go to the Adelaide Show.

Ming was terribly excited by the crowds, the fairy floss and the ghost train billboard advertisements. He kept pointing to these and saying, “Ming wanna go on that thing, Mummy – pweese!” He was fascinated by the pictures of ghosts, skeletons and monsters.

So I bought us tickets, told Anthony we’d meet him in the closest coffee shop and Ming and I waited in the queue. This is when I had my first tiny qualm. Children much older than Ming were coming out of the ghost train ride looking a little worse for wear and I got a bit nervous. Then, all of a sudden, it was our turn and we were strapped into the tiny cart and off we went.

Just before those horrible black doors opened and we were whooshed into the 2-minute nightmare, I whispered to Ming, “None of this is real, darling – it’s all pretend.” Why, oh why, didn’t I say this to him earlier?

At the halfway point, he was so terrified that, seeing a tiny crack in the wall to the outside – a sliver of light, a glimpse of another queue – he screamed, “Ming wanna go back!” But it was too late. Our cart was thrust, once again, through another set of black doors, and red eyes, ghostly hands and skeletal breath seemed to touch us as we progressed, surrounded by the bloodcurdling screams of those behind and in front of us.

I held Ming close as he began to cry. His fear was so potent that my own heart started to race with remembered childhood nightmares of spooks, of bogeymen – the dark fear of the unknown.

Then, whoosh, we were back in daylight. It was over. I picked Ming up and hoisted him into my arms. He was trembling. I hated myself.

In the car, on the way back to the motel, Ming remained silent while I told Anthony about the ride, how scary it was and how badly I felt. But Anthony just laughed and said, “I’m sure Ming’ll survive, Jules – you worry too much.”

Then, from the back of the car, came a querulous voice. “Andony?  Mummy and me neeely got gobbled up by the monsters, but we surbived.”

I made my decision then and there: no more ghost trains. Ever!

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Bullying 2

I’ve been reading quite a bit about bullying lately, not just because it is a hot topic, and an enormous problem in cyberspace, but also because I’ve only just begun to realize, with the benefit of hindsight, its impact. I don’t usually like labels, but ‘bully’ is a very handy concept in that it enables you to put the bully/bullies into a kind of metaphorical ‘bully box’ and toss them away.

Now, obviously, bullying is not a new problem, but it seems to have been talked about much more over the last 12 years or so. There is very little I can add to this burgeoning discourse. I am more interested in the characteristics of a bully and in trying to figure out why a bully is a bully. I’m also curious about whether a bully can change. As is probably obvious, I am fascinated by this topic.

Characteristics of a bully (including possible reasons for the bullying personality):

  • Often bullies have poor communications skills, so use shouting and swearing to get a point across.
  • Typically, bullies will be devoid of empathy and may not even understand the meaning of the word.
  • Bullies may use the following tactics: invasion (arriving aggressively on your doorstep unexpectedly); coercion (the surprise attack method of getting you to do something); complaint (to make you think you are in the wrong); charm (pretense of friendliness to get something from you); and/or inane smalltalk (to bore you into submission).
  • Interestingly, bullies may never have been bullied themselves but, instead, may have been over-indulged children who have learned that tantrums work.
  • Many bullies show a ghoulish interest in real-life crime and horror, enjoy playing cruel practical jokes, and may even inflict physical harm to animals or humans.
  • Bullies are often irrational, dishonest and lacking in emotional intelligence.
  • Often, bullies are flamboyant, attractive, ‘larger-than-life’ and sometimes even popular (in a party context).
  • Some bullies are preoccupied with wealth and may be ‘sycophantish’ towards anyone who is wealthier.
  • Most bullies do not have any idea of what a conscience is.
  • Bullies are often very miserable people.

Tips on how to deal with a bullies (this is what I’ve done and it’s worked):

  • Recognize the bullies as bullies
  • Say ‘no’ to the bullies. Ask them to leave you alone and, if they don’t, seek professional support.
  • Put the bullies into the metaphorical ‘bully box’, toss them away and then forget about them.
  • Forgive their ignorance.
  • Forgive them for hurting the people you love most in the world (that’s a difficult one!)

Then SMILE!!!

Note: These are just my own thoughts on the bullying issue, gleaned from my own experience. I do hope, however, that some of this might be helpful to others.

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