jmgoyder

wings and things

Realms of reality

It’s as if I live in two completely different worlds – two realms of reality.

Both worlds are uniquely beautiful but with sharp edges, like rocky islands, impenetrable.

I wade, frolic , and sometimes nearly drown, in the unpredictable sea between the two worlds but I always make it to one shore or another.

A teenager and an old man – a father and son – two worlds.

Sometimes I dive deep into the ocean of my own world and find treasures buried in the sand.

Usually I just find two – one for Anthony and one for Ming.

Today I found a third in the form of a little island between the two realms.

It is just big enough to build a small hut, the water is fresh, the sun is warm and I can still see.

I can see in the dark – from realm to realm to realm.

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Love story 112 – The most beautiful man in the world

This photo was taken a few years ago before the Parkinson’s Disease kicked the guts out of us.

I miss this Anthony so much.

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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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Love story 111 – Sorry

Some people can’t say this simple word, ‘Sorry’.

Anthony got a nurse to ring me the other night just so he could say it to me: “Sorry, Jules.”

“My ‘sorry’ is bigger than yours,” I quipped before we said goodnight,

Sorry.

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A problem is a problem

I can’t call a problem a challenge because, to me, a challenge implies something zingily positive whereas a problem is something devoid of zing. It seems more useful to see some of the problems I am facing, with Anthony in the nursing lodge, as problems. I guess I’m not very ‘new age’ – sorry but no matter how many daisies surround a cowpat, it is still a cowpat and it stinks.

So, as most of my ideas of how to cheer Anthony up have fallen fairly flat (reading/showing him the blog, taking old photographs in, buying him the gramophone, going out to lunch, bringing him home etc.), I have decided to establish a strict routine every week and write it down for him, and me, and stick to it. This will be good for both of us because, my own personal turmoil, grief, loss of job, and Ming challenges (yes, I can call these challenges), has caused me to lose all semblance of a routine.

Maybe a whiteboard would be a good idea. I could put it on Anthony’s wall in the nursing lodge and write down exactly what day and time I am coming in, and other plans. I could also write our home phone number (which he mostly can’t remember) so he can ring me for a change. Actually I could also write down the phone numbers of his favourite friends and family on the whiteboard. These are in a notebook in one of his drawers but he keeps losing this, or not understanding it.

Perhaps the daisies will grown into the cowpat and give it a new odour. You never know! Nevertheless, a cowpat is a cowpat and problems are problems, not challenges.

Godfrey has a challenge in teaching the gang ‘Gangnam’ dance moves.

Daffy has a problem with loneliness because he is the only Indian runner duck left.

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Love story 110 – Inseparable

Less than two years ago it was unthinkable that the day would come where Anthony would have to go into a nursing lodge. I vividly remember making a secret appointment with our doctor to discuss his deterioration and, after arranging Silver Chain respite help that day, Ming and I went into town. During the conversation with the doctor, he mentioned the inevitability of nursing home care and Ming, nearly crying, said, “No, we will never put Dad into care.” The doctor gently said to him, “You don’t know what is coming.”

And we didn’t. All three of us could never have predicted how bad it would get – hallucinations, immobility, stroke-like episodes, falls, loss of hand/eye coordination, confusion, nightmare horrors, sleepless nights, sleep-filled days, loss of appetite, subsequent dramatic weight loss, confusion, cognitive problems, ablutionary problems … and the list goes on. Ming transformed from a devoted son to an intolerant son and I transformed from a devoted wife to a physical and mental wreck. But I only see that now – in hindsight.

The things I wish:

  • that I had stopped asking Ming to do occasional ‘night shifts’ with Ants while Ming was still at school;
  • that I had discussed nursing home/lodge possibilities with Ants earlier (he was assessed as a candidate for ‘high care’ over four years ago); and
  • that I had broached the subject of death with both of them earlier.

Bubble and Baby Turkey are inseparable but I think this is because, initially, there were four Bubbles and four Baby Turkeys and (except for these two) the foxes got all of them when they were littler despite my vigilance.

Ants, Ming and I were inseparable too until Parkinson’s disease began to steal pieces of our jigsaw. Ming took a few leftover pieces, went into his room and shut the door; I tried to find some of the pieces of a blue sky, but they all looked the same; and Ants never liked jigsaws in the first place.

This photo was taken a few years ago when we were inseparable.

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Taxi adventures

The day had become unexpectedly hot by the time the wheelchair taxi arrived with Anthony at noon. I rushed out and said hi to him through the taxi window and then stood waiting for him to be manoeuvered out of the back of the taxi but it was taking such a long time that I ran out to the yards and let all the poultry out. When I got back to the taxi, I realized why it was taking the driver so long to get Ants out; he wasn’t in a wheelchair!

Grrrrr! As the taxi driver and I tried to get a very immobile Anthony to use his walker to take the few steps onto the electronic ramp thing at the back of the taxi, I exclaimed a little to Ants and the driver about the lack of a wheelchair and the driver couldn’t understand why the nurses hadn’t put him in one either. (I found out later that Ants had refused).

Anyway, despite this, Ming and I managed to get Ants to an outside table where we all ate lunch. Ming was sullen, Ants was silent and slumpy and I was hot and bothered. Oh well, the corned beef and salad was a success. Eventually it got too hot outside so Ants came inside (he had recovered his mobility) and we had a cup of tea in the kitchen where a couple of attempts at conversation were hampered by Anthony’s  rather mumbly incoherence. But. yes, it was evident that he was happy to be home.  Then Ming decided to put on an episode of Wooster and Jeeves (he had recovered his humour) and I left the two boys to it because, when all three of us are together, there is now a new tension. I happily withdrew to do the dishes and hang out the washing.

I could hear Ming’s laughter but not Anthony’s as he has forgotten how to laugh of course. because of the rotten PDD. He used to absolutely crack up at this show – and that was only a year ago. At one point I heard Ming, yell out (not unkindly) “C’mon, Dad, have a laugh!”

Then I had to ring the taxi people to change the booking from a wheelchair taxi to a sedan to take Anthony back to the nursing lodge. Ming soon went off to milk the cows and I watched some of the show with Ants, then reminded him that the taxi would be coming soon. He immediately became despondent and demanding that he should be able to try staying overnight and, for the millionth time, I explained that I could not manage him in the nights because he was too heavy and we almost had an argument. Then the taxi arrived and I helped Anthony out and he walked using his home walking stick and shrugged my hand away in this new nasty way he has developed.

The taxi driver was someone we hadn’t met before and, when I explained about the wheelchair taxi mixup he did what many people do and said, “This bloke doesn’t need a wheelchair – look at him. He’s fine!” And Anthony said, bitterly, “Some people don’t think so.” Of course the taxi driver could see that Anthony wasn’t fine at all but he was being kind to Ants and I appreciate that. However, this kind of remark is really unhelpful when you have just tried to explain to someone that they are in a nursing lodge because they are not fine. Argh!

Then a very funny thing happened. I was trying to fold up Anthony’s walker and in order to do so I had to remove the basket. The taxi driver, being a gentleman, offered to help and leaned forward to take the walker and somehow the basket, that I was holding in my other hand, got caught in his fly (you know the front zipper of jeans). The trouble is, I didn’t know this because I was looking at Anthony, so I was tugging at the basket, not realizing it had hooked itself into this man’s fly. It was only when he yelped that I saw what was going on and I quickly let go of the basket so that he could untangle himself and then I nearly collapsed in hysterical, apologetic laughter. And then I just could not stop laughing – as I was saying goodbye to Ants, as I was paying the fare – it just kept bubbling up and out of me and the taxi driver was laughing his head off too.

As I said one last goodbye to Ants, the laughter hit me again and I buried my guffaws into his chest as I hugged him, then pulled away to see if he might be smiling. He just looked at me with his shark eyes before they zoomed off.

He has forgotten how to laugh.

Well, I haven’t!

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The wheelchair taxi woman

When Anthony has been wheelchair-taxied home and back he has had a variety of drivers. One of those drivers is a lovely woman who dropped in unexpectedly yesterday morning on her day off to ask about buying peachicks. We exchanged phone numbers so that I could ring her if we are lucky to get any hatchlings but admitted that I wasn’t sure what the chances were due to our fox problem. Also the peafowl are very independent so I don’t know if and where the peahens are laying (I obviously need to do some research!)

Anyway, during our short conversation, she asked when ‘hubby’ was coming home again and I said I had begun to think this was a bad idea because it upset him so much to go back to the nursing lodge after being here with us. She disagreed and said that even though he is upset each time she takes him back, it is well worth it for his sake, to be home even if it’s only briefly. “It’s the same for every person,” she said, “Don’t stop bringing him home.”

So guess what? Anthony is being wheelchair-taxied home in around 2 hours, for lunch and the afternoon.  Wish us luck!

Oh no – I better hurry up and hide those two pots with the dead azaleas in them! On the other hand, Anthony does know that I am not a gardener.

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A repertoire of lies

Today I am travelling an hour up the road to meet my wonderful friend, Andrew, who will be travelling an hour down the road, to have lunch at the town halfway between his place and mine. Now Andrew, who I’ve mentioned in previous posts, is gay, and in a committed relationship. Despite these facts, Anthony has mentioned him a few times lately, in a suspicious way, so obviously I cannot tell Anthony about my lunch date today because I don’t want him to suffer the jealousy that has begun to rear its ugly head.

So I have to lie. And I have lied. I’ve told him that I have to take Ming to a party in this town and I might not be back in time to go and see him in the nursing lodge, but that I will see him tomorrow.

I have begun to develop a repertoire of lies to explain either my inability to come in to see him, or my inability to bring him home, because I am too gutless to actually tell him the truth when I know how much the truth will hurt him.

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Disorientation dilemmas

Over the last couple of weeks I have become more and more reluctant to take Anthony out of the nursing lodge to either bring him home or elsewhere, even with the use of the wheelchair taxi, because of how often these ‘outings’ sort of backfire.

One of the nurses said to me the other day that when he gets back to the nursing lodge he is often moodily unhappy and it has been suggested to me by friends, family and staff, that taking Ants out of an environment he is still adjusting to might be detrimental rather than delightful. Now, in principle, I already knew this because I spent many years working as a nurse, then undertaking a PhD about dementia and finally having a book published. Wiithin that book, I devoted a chapter to this very issue, so I do know.

Back then I was writing about a patient who always wanted desperately to go home so one day, I took him out for a walk up the street and, instead of being delighted to get away from the nursing home, he became even more disorientated and I had to bring him back much sooner than I expected. It was a humbling experience because I had thought, at the time, that I would cheer him up but that little venture out exacerbated his confusion and he was more agitated than usual for a couple of days. Yes, I felt bad but I also learned something.

That was years ago – well before Anthony and I were married. I told him the story of this man and Ants was proud of me for undertaking the thesis and he said I was too kind and I should have just left the situation alone. He said, “Jules, he needs to settle.” Ants felt so sorry for that man.

Now he is that man.

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