jmgoyder

wings and things

Boom, crash, opera!

I bought a CD for Anthony one Christmas and we played it loudly. It was opera and it was Ming’s first exposure to any music other than ‘The Wiggles’. He was four and a half.

From the time he heard that CD, Ming sang operatically all over the house. This lasted for about six months. Instead of saying all of his new words, he’d warble them. “Where’s teddyyyyyy?”; “Gimmeeeee gingereeeeeeella [ginger ale] – please Mummyyyyyyyy daaaaaaarliiiing” – were sung so powerfully that I was afraid the windows would shatter.

At pre-school he did the same. With no self-consciousness whatsoever, he’d trill, “I want red tractoooooor”; or “I havta blow my noooooooose.” Everything was sung, so much so that he became somewhat famous for his operatic voice. The other kids would say, “Sing opera, Ming” and he’d sing his little repertoire, grinning when everyone clapped.

Then he started singing an octave lower. When he was being a wolf, his growl would become a surprisingly deep warble. When he was playing cars, his ‘vrooming’ would transform into a thunderous baritone. The first time I heard this, I rushed into his bedroom, thinking he was having some sort of strange fit.

But, as suddenly as it started, the opera-singing stopped – bang. A friend I hadn’t seen for ages dropped in and, over coffee, mentioned she’d been taking opera lessons. I said, proudly, “Ming does opera – he’s amazing.”

She looked doubtful, but I introduced them to each other anyway, telling Ming that Ann was an opera singer.

“Your mother tells me you sing opera,” she boomed. (She was quite a large, boisterous woman). “Sing,” she commanded.

Ming looked at me, then looked at her, then looked at me again. He opened his mouth, then closed it on a croak.

“Do you want me to sing for you, then?” she asked Ming and he nodded shyly, but he didn’t look one bit keen. He climbed onto my lap for reassurance.

For the next five minutes, her enormous voice filled the house. The volume was alarming in its intensity. Ming clutched my hand, eyes wide with shock, and I felt my own pulse quicken with amazement.

After she left, Anthony came in from the dairy and said, “Why did you and your friend have that CD turned up so loudly? We could hear it over in the shed.”

I explained and he roared with laughter. “Where’s Ming?” he asked.

“He’s being a tiger in his room, I think,” I said.

“Are you sure? It’s so quiet.”

We both went and had a peek. Ming had his plastic tiger mask on and was snarling at an imaginary foe outside the window. The snarls were not musical; in fact, they were more like mimes.

He turned around and saw us, then whispered, very seriously, “I don’t do opwa anymore.

Ming didn’t sing a note for days! It was a BeeGees special on TV that finally broke the silence, and we got our little singer back. He still does that falsetto thing marvelously!

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Love story 116 – Good guess!

The relief of my conversation with Ants last night on the phone, and this afternoon in the nursing lodge, was like a silk scarf that you wrap around your neck with its beginning and end hems floating in the breeze. (Yeah, dreadfully twee but whatever!)

I asked him why he had finally stopped accusing me of having an affair and he said, “I just guessed it.”

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No comment

Thanks so much for those who commented on sundowner post – no time to reply at the moment.

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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 2

A friend had a fall today and, after hours of checking to see if she’d broken her hip (no, thank goodness), she was released from hospital and is staying with me tonight with two of her beautiful grandchildren who she was babysitting. She is in a lot of pain but is in bed now and I am hoping she will be okay in the morning.

I got the message to call her at the hospital from the staff at the nursing lodge this afternoon,  just as I was pouring drinks for Anthony and me, so I had to rush off. How ironic that I wrote a post about contingencies earlier today.

No time to read blogs or reply to comments at the moment.

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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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What next!

Two phonecalls tonight with Anthony.

I rang him at 7.30pm to say goodnight then he got a nurse to ring me at 8.30pm. During both conversations, Ants was convinced that I was having an affair and that everyone was telling him that. I thought he was joking to begin with, then realized he was serious. He said, “Jules, I have the shakes.” I kept saying not to be so ridiculous and, luckily, the nurse was there in the background of the second phonecall to reassure him.

This evening confusion thing is escalating and now we have a brand new ingredient: jealousy.

Anthony: It’s that man they told me about.

Me: What man? Who told you? What are you talking about?

Anthony: He kissed you.

Me: Nobody kissed me, Ants, please Ants, are you kidding around?

Anthony: Okay, Jules, sorry, I was just pulling your leg.

Me: Well, it’s not funny – don’t joke with me Ants like that – please!

Anthony: So where are you now? Is he there?

Me: Who? Ming?

Anthony: No, that guy we were just … that guy, that man … Jules I love you.

And it went on like this for awhile until the nurse intervened, reassured me on the phone and gave it back to me to say goodnight to Ants.

It is going to be okay. I know all about dementia so I am prepared but this jealousy is so new it flabbergasts me.

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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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