jmgoyder

wings and things

Snoopy

When Ming was little he always talked to himself. Even before he said his first words, he would chatter away in that strange preverbal language that he’d punctuate constantly with sudden exclamations or wild giggles. I used to love listening to this so-called nonsense, knowing that even though it didn’t translate easily, it made enormous sense to Ming. He would play for hours with his blocks and his duplo and the house would be permeated with the highs and lows of his quiet little voice with its exaggerated intonations. It seemed never to cease – a beautiful sound, like a water fountain or soft music in the background.

I think even Ming found his own voice soothing because often, when there was a lull in the Ming monologue, Anthony or I would go and check only to find that he had either talked himself to sleep or else had put his dummy into his mouth for a bit of peace and quiet!

At the age of two, Ming still didn’t have the 50 words he was supposed to have (or so I was informed by two of the more experienced playgroup mothers), but he was pretty close. He treated each new word as something exciting and precious, rolling it around on his tongue like a lolly, or else jumping up on my knee and shouting it into my ear to give me a fright. Initially, he seemed to want to keep each new word as a separate kind of plaything, rather than joining his vocabulary together.

Eventually, though, Ming began to jigsaw his words into phrases and mini-sentences and it was around about this time that he began to talk to his stuffed toys in the same constant way he’d talked to himself for so long.

One night after I’d tucked him in with his Snoopy toy and put the light off, I heard the murmur of his little voice and, always curious, I crept up the hallway to his doorway with my ears pricked.

The hall light was shining into his bedroom and I heard Ming say, “Is it awight, your mouf like that, Snoopy?” After a short pause, he rephrased the question. “Snoopy, is your mouf comfy like that?” After another short pause, Ming’s tone became impatient and I heard the echo of my words in Ming’s reprimand: “Snoopy, doan ignooooooooooowa me!”

I ventured in and sat on Ming’s bed. He was trying to poke Snoopy’s red tongue back into his mouth but the tongue was fixed – sewed into the furry material at an angle.

“Oh, Mummy!” Ming exclaimed when he saw me, “Snoopy can’t unnastann me!” His little brow furrowed and he was gripping Snoopy’s tongue in frustration.

Then, just as I was about to break it to Ming that Snoopy was never going to be able to communicate with him, Ming’s eyes lit up as the truth suddenly hit him. Looking up at me from his pillow, as if I were an extremely silly person, he said, with solemn wisdom, “Oh, Mummy, you muss ‘member, Snoopy is oany a toy!”

“Oh, yes,” I said, feigning surprise and getting up to go before Ming spotted my barely disguised grin in the dim light. “Good night, Ming – I love you,” I said as I left his room.

“’Night, Mummy, I wuv you,” he called up the hallway, then, in such a quiet whisper that I nearly didn’t catch it, he breathed, “’Night, Snoopy, I wuv you too.”

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‘Where is love?’

Oh no! Now it’s Zaruma singing that Oliver song, ‘Where is love?’

http://www.youtube.com/watch?v=WjJDekSculo

Zaruma: Tapper, as we are the only two Muscovy ducks here, I think we should get married.
Tapper: What?

Zaruma: Look I’ve seen the way Daffy looks at you and I know you are fond of him but, face it, Tapper, Daffy is an Indian Runner and he can’t even fly! I don’t like the way he chases you around and if I have to fight him I will. Tapper, we are meant for each other. I’m in love with you and even if you don’t feel the same about me, you soon will.
Tapper: WHAT?

Zaruma: I have tried not to overwhelm you with my feelings but I think you should really consider my proposition because I am sincere and reliable and I will never ever let you down. So, what do you say?
Tapper: ZZZ

Zaruma: (singing) Whe-e-e-e-re is love?

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Love story 120 – Romance

When Anthony suddenly transformed from a macho machine into a rose-buying romantic all those years ago, it was a massive shock to me. As a macho machine, he was never demonstrative or loving or generous and I was so used to this that the ‘new’ Anthony took a bit of getting used to.  In the nearly 20 years since we’ve been married he has given me the most beautiful gifts: pearls (a few strings), silver bangles (around 20), expensive perfume, a carriage clock, an Omega watch, a couple of other watches, an antique lithograph (well he had wanted this himself), my first ever electronic organizer, my first laptop, a min-tv for my office, a beautifully framed picture of me at my graduation, two antique cameo broaches and the list goes on. Most of these were surprises but over the last few years, since he became too ill with PD to drive, he would tell me to go and buy my own Christmas and birthday presents with instructions like “Go and buy yourself a nice frock” which is ludicrous of course since I haven’t worn a dress since I was around five years old so I would come home with expensive jeans or boots instead! It wasn’t as magical to have to choose my own presents but after a year or so I began to look forward to this. I would ring him from whatever shop and tell him I was trying to choose between this bangle and that bangle and he would always say, “Get the best one, Jules.” So I would!

Don’t get me wrong. When the dairy industry was thriving and I was working, we were comfortably off, but not wealthy and Anthony, having always been extremely scroogy careful with money, continued to astound me with his birthday and Christmas gifts to me. But perhaps the best and most extraordinary gift was his ability to say “I love you, Jules.” The first time he said this, a few seconds before he proposed marriage, I laughed because I thought he was joking. For him the word ‘love’ was a definite taboo and whenever I had used it on him he had shrugged and grinned, but never reciprocated. Since the first time he said these words, he has said them every single day of our marriage and they have not lost their power.

Lately, love has become the main topic of conversation for him. When I am in the nursing lodge, or he is on a visit home, or on the phone, he talks about this big love we have for each other and his eyes smile even though his mouth can’t. He loves talking about love, so much so that I sometimes say, “Yeah, okay, I get it!”

After months of rather mopey misery on his part, Anthony seems to have finally accepted what is, so when I see him, his eyes light up, and he almost yells, “Jules!” He does this on the phone too and seems to have stopped begging me for the impossible – to bring him home to stay. Our conversations are lighter. Of course the confusion and disorientation of PDD is still there but this love-talk seems to bypass that and now, when I leave the nursing lodge, I say goodbye with a smile because I know he knows that I am in love with him too.

A few years ago

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Love story 119 – PS

During my bout of ‘Godiness’ yesterday I was reminded of the days when I first met Anthony and Inna and my shock at what I then thought was their secularism. You see, as a 17, nearly 18-year-old I had never really met people who didn’t go to church and I was appalled! I had been brought up in an extremely evangelical household with church twice on Sundays, prayer and Bible studies once a week and, as a kid, I used to wear ‘Jesus Loves You‘ badges and hand out tracts to perfect strangers. I was a staunch and very narrow minded Christian.

I spoke easily and confidently of my faith to Anthony and Inna much to their amusement and, when I look back, I both cringe and laugh at how I tried to ‘convert’ them to my particular brand of Christianity with the Bible-bashing zeal of my youth and limited experience of life’s ups and downs. Anthony and I would have heated arguments about God which usually culminated in him roaring with laughter at what he described as my naivety. So I would pray every night that he would see the light (with a PS. for him to fall in love with me – haha!)

Inna humoured me and when I said things like “I am praying for you to feel better”, she would smile twinkingly and say, “Well, that’s nice, darling,” and pat my hand soothingly as if I were the one who was elderly and ill. My self-righteousness at the time amazes me; after all Inna was very good friends with the Anglican bishop, donated generously to the church, and attended when she was well enough.

Today, in the hospital, waiting with Anthony for three hours before he was taken in to surgery,  I remembered all of these long-ago events and conversations. At one point, he dozed and then woke up with a start and looked at me piercingly. “Are you Jules?”

“Of course I’m Jules, you idiot, you haven’t even had any sedation yet and you’re already loopy!” I got the giggles.

He reached for my hand and his voice grinned as he said, “We are so crazy about each other aren’t we!”

I said “Yeah, yeah, now shut up and let me read my magazine.”

“I love you too,” he said, closing his eyes.

So I guess you could say that my PS prayer was answered!

He’s still in surgery so let’s hope the rest of the day is smooth sailing.

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Comedies of errors

1. With a heart full of love and gratitude to Ming who had mowed lawns all day, then fed and put the gang away, I re-heated my chicken noodle soup made from scratch (yes, I boiled a chicken, boned it, removed the disgusting fat the next day, added noodles, vegetables and spices and voila!)

So tonight is the third night of the chicken soup. On night 1, Ming said it was like heaven; on night 2, he said it tasted even better. Alas, tonight, he said, “Mum, this dinner thing is becoming such an ordeal for me.”

Brat!

2. I rang the hospital this afternoon to confirm the booking for Anthony’s skin cancer operation tomorrow and not only was there no record of this, there was also no record of the original date. So I had to make several more phonecalls to figure out if Anthony and I were real people etc.

I just rang again and apparently we do exist so that is a great relief.

3.  At 4pm I answered the phone hoping it was the peacock rescuer man but it was Ants who had asked a nurse to ring me. He was completely disorientated and kept begging me to love him again. It took a long time to reassure him about where he was, and remind him about tomorrow’s operation.

I said “I love you, Ants” so many times, until he finally believed me.

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Love story 118 – Sunbaking

Anthony’s skin cancer operation has suddenly been fast-tracked to tomorrow (Monday) – yikes, I only got the phonecall Friday. Okay, for those who don’t know this, Anthony has a very nasty skin cancer right next to his left eye and it is painful, so it has to be cut out. This has to be done in hospital so he needs to be there by 9am and I still haven’t decided whether to get the wheelchair taxi and meet him there or take him myself. His mobility at this time of the morning isn’t good.

Over the years, Anthony has had multiple skin cancers either burned off (with that nitrogen spray stuff) or surgically removed. Many of them have been squamous cell carcinomas, not melanomas, which is good. He was born into an era where hats were worn haphazardly and sunscreen probably hadn’t been invented and, when I met him, he was in the habit of sunbaking after lunch to get a tan. Inna (his mother) would often ask me where he was and I would tell her he was lying out near the fig trees and she would tut-tut and say that was fine as long as I wasn’t sunbaking with him – ha! At the time, that would have been a dream come true for me but I am glad I didn’t as he has now had over 50 skin cancers burned off and several requiring surgical removal.

So tomorrow will be an adventure of sorts because of how his PD, and now PDD, is likely to affect the ordeal. The surgeon is not going to do the procedure with a general anaesthetic (too risky) so Ants will be given a local anaesthetic and sedation. The operation will take about an hour or so. I have to admit that I am absolutely dreading this because of what happened last time.

Last time, the skin cancer was on top of his skull so the pain he suffered afterwards was excruciating and his medications for PD were temporarily lost and he missed a dose or two: result, he went totally loopy and had to be on 24/7 watch. It was a nightmare just after the operation so I raced home to get his spare meds., raced back and sneaked him some and he was okayish for awhile but (this was a few years ago when he was more mobile) he kept trying to wander out of the hospital – argh!

Tomorrow I will have to arm myself with secret drugs – ha – and a double dose of patience with both Ants and the system. It is only going to be a day procedure this time and I’m not sure if this is a good idea or a bad idea – maybe he should stay one night in the hospital? I wish I knew. I have decided to take my box of paperwork in as I will be there for hours.

This is probably my overactive imagination but sometimes I can feel Inna’s smile of approval, almost as if she is kind of watching over her son, and me, and Ming. This is a good feeling.

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Love story 117 – Without

During this strange and difficult year (Anthony going into the nursing lodge, Ming’s spinal operation, and my loss of employment), Ming and I have somehow emerged from the quicksand of my grief and his rage and we are beginning to cope better. This evening we began a list of things we have to do, and buy, to keep this place ticking along properly. It is still a shock to me that Anthony is no longer at home and in charge of these things but, as Ming rightly pointed out tonight, this hasn’t been the case for some time.

Ming’s catchcry is always ‘teamwork’ and my response is always reluctant because he is so bossy. We have, however, dealt with our tussle with a truce handshake so tomorrow he will do the lawns and I will do the bills and other paperwork, and we will not argue. We will begin to transform our disorder into order, bit by bit by bit, without Anthony.

It is this withoutAnthonyness that seems to have suffocated my energy. I don’t feel quite present and I keep losing all of my todays. But Ming is okay and much stronger at the moment and tonight he asked me to lean on him more so I agreed. But I won’t really do this of course because I have to pull myself together so that I don’t cripple him under the weight of a temporary bout of despair. Without tomorrow, today would sob itself to sleep.

There is (I think, but I’m not sure) always, always, always, hope.

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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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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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