jmgoyder

wings and things

Our marriage

For better or worse ….

When Anthony and I were married, we agreed to the usual vows including ‘for better or worse’. At the time, I was unconcerned that he was 23 years older. He, on the other hand, was very concerned, and worried that I might end up looking after an old man. At the time, we both laughed this off because we didn’t anticipate illness.

It seems unfair that my beautiful Anthony was inflicted with kidney cancer, diabetes, liver disease, prostate cancer, then (by far the worst), Parkinson’s disease – all within the first ten years of our marriage. For Ming to never have known this gorgeous, energetic, life-of-the-party person I fell in love with is a bit heartbreaking for me. I can only show Ming photos of when Anthony cuddled him, lifted him over fences to feed calves, taught him how to wash the car, strollered him into the dairy, slept with him crooked inside his shoulder space, toilet-trained him in about two hours when I was away at a conference, loved him with the energy of a new father, rejoiced in every single breath, sound, word, movement that Ming made.

Now, with the encroaching dementia that comes with advanced Parkinson’s disease, and Anthony’s deterioration in mobility, his wild hallucinations that he has been kidnapped, his outings with me fraught with bizarre stories of what I know couldn’t possibly have happened (eg. removal of a foetus from Ants), I sometimes cry.

Tonight, the nurse enabled a phone-call to Ants and, as soon as I heard his voice (usually it is soft now, but tonight it was loud and confident), my pent up tears broke.

Anthony: Jules -please don’t cry!

Me: It’s all just so hard, Ants – sorry.

Anthony: Jules, it is going to be okay.

In sickness and in health ….

The term ‘marriage’ implies commitment, loyalty, empathy, forgiveness, flexibility, and the ability to carry on, no matter what. In this sense, I am actually ‘married’ to a lot of people and this makes me feel on top of the world!

61 Comments »

Ming’s court case update

I wasn’t going to say anything about this for awhile because it is so hard to talk about. Ming and I attended court the other day and his charges were read out, one by one. So, instead of the magistrate saying, “You are charged with five counts of dangerous driving causing bodily harm”, she read the charge five times. I sat at the back of the court room thinking it sounded like he had had five separate accidents. Ming stood next to his lawyer who then asked for an adjournment. This was approved with the next court appearance late in February. I think that is when the barrister will assist Ming in his plea of guilty and help him get a lesser sentence than prison.

The fact that prison is a possibility has been pointed out to me by the lawyer, barrister, police and our Anglican priest (who also happens to be the prison chaplain for this area). He – the chaplain – is meeting with us next week to discuss prison implications for Ming and to demystify its terror. Of course this scares the hell out of me because I thought prison was a very remote possibility, but the chaplain has said that the law is quite unpredictable and he wants to prepare Ming and me for a scenario whereby Ming is whisked straight from the courtroom to prison.

It is so hard for me to accept that my son, who was only wanting to give the kids a thrill, with parental consent, drove off the property, lost control on gravel, and injured five children. This careful, cautious, non-reckless son did this and I still cannot believe it; it still seems surreal.

All five children have recovered physically now, and for this I am so grateful that I cannot put it into coherent words – just a hell of a lot of tears to say thank you for the fact that they are okay.

I haven’t been able to properly focus on Ming for many weeks, because I was ashamed of him, and distraught, and so worried about the kids. Now that I know they will be all right, I am re-focussing on Ming and am terrified of course.

Praying seems a rather good idea.

103 Comments »

Itchy hands

For a couple of days now my hands have been painfully itchy (apparently there is a myth that this means I am coming into some unexpected money – ha!)

I noticed that on the sides of each of my fingers there are several miniature blisters so I thought I’d google the condition and here is what I found:

http://www.pompholyx.co.uk/your_experiences.html

Yes, it would seem that I have pompholyx which of course I have never heard of before. It’s a form of eczema apparently, and the causes include everything from humidity to stress (both of which fit my situation). I’m a little alarmed to find that it may get worse but I’m also relieved that it may simply go away of its own accord. As diseases go, it certainly isn’t serious, but the itchiness is driving me slightly crazy because I want to scratch my hands to bits.

Changing the subject: I wrote a post about Ming yesterday but I trashed it soon after because it seemed a bit disloyal to a son who is, after all, only 10% evil haha! But I realize it will already have been seen by some so, just to reassure you, he and I are once again on the same page, and my new nickname for him is “90%”.

Another update: even though I briefly sighted a couple of the peahens the other day, I haven’t seen them again and five are still missing. Nesting season is well and truly over so I think I will have to assume that they have either flown away (to get away from the peacocks’ attention), or have been killed by foxes. I am hoping it’s the former but I will never know. My peacock-knowledgeable friend, Mike, came over to see us yesterday because Anthony was home for the day and I asked him if the males would be okay without their ‘wives’ and he reassured me that they would, but it is still sad to have lost the girls. I guess, you never know, they might come back. That’s the risk with free-range but I never wanted to pen them in.

I’m off soon to go into the nursing home for the afternoon. It is only one street away from the beach so much cooler than here on the farm. Pompholyx is not contagious so that’s okay; I just hope he doesn’t notice that I have taken my wedding and engagement rings off because there were a couple of blisters underneath them. My ring finger feels really naked as, except to clean the rings, I have never taken them off.

Here are some photos of the peahens (much more pleasant than a photo of my blistered hands):

Queenie
IMG_0040

42 Comments »

Having fun!

At 8pm tonight, I rang Anthony’s mobile phone and it was answered by a nurse and handed over to him. I have tried 8pm many a time (my method is to let the phone ring 11 times, hang up before it goes to the message bank, then try two more times in the same way).

Anyway, tonight I got to talk to him just as the nurses were putting him to bed. He was articulate, lucid, content and said he looked forward to seeing me tomorrow. It was such a normal conversation, he wasn’t in the least demented or delusional or distressed and his voice was so clear!

I have no idea whether he had been given what I call ‘the emergency pill’ (a sedative) or not, but it was such a relief that he was okay because I had been feeling guilty all day for not seeing him today.

The main reason I didn’t go in today was because I had a migraine. This was partly due to the relief of hearing that my niece was out of her spinal brace (extreme relief seems to trigger migraines with me), but also because it was my birthday yesterday, I’d had a fantastic lunch with my ma and Mingy.

DSCN2206 (2)
DSCN2209
DSCN2208

Then, in the evening, a heap of friends came over and it’s quite possible that I may have over-indulged in champagne and stale pizza.

005
006
007
019
020
041
043

When it began to rain, we all came into the kitchen and, with the music, loud conversation, and drink-clinking, I was reminded of those long-ago days when I first met Anthony, the kitchen throbbing with life, the stereo blasting, the absolute sense of unrestricted fun.

And for a moment, I basked in the memory of my adventure into the heart of Anthony. His sense of fun was always contagious – absolutely – and now of course he can no longer be a part of this sort of frivolity because he is too sick, too incapacitated, too confused.

I think one of the main reasons I fell in love with him is because he transformed me from a shy, intense, introspective teenager into a person who had the capacity for fun! He didn’t even know it was my birthday yesterday and he thinks he has only been in the nursing home for a few weeks (it is nearly 2 years), and of course he doesn’t know we had the impromptu party last night.

More than anything in the world, I miss his loud laugh, his wild sense of fun, his gregariousness and life-of-the-partyness, his twinkling eyes when he glanced at my flustered face, his amazing hugs and huge strength of being, of character.

Anthony has given Ming and me a huge appreciation of having fun despite all of the odds, and, for this, I thank him to the sky.

Of course I also thank the fantastic friends who came over last night!

44 Comments »

“Totally and utterly stupid.”

Yesterday morning Ming and I went to our third appointment with the lawyer and were told that the first court appearance next week will simply be a reading of the charges and an adjournment until the end of February. We were also given the video of the police interview conducted the night of the accident. Ming has been told to watch it with a notebook in hand in case he wants to change or retract anything he said.

We were going to watch it together but after he went to bed last night, I decided to watch it by myself just in case I had an emotional reaction. The interview began after midnight, the night of the accident, and went for 80 minutes and was conducted while I was waiting with my friends in the foyer of the police station. My mother was with me for the first part of the night but when my friends arrived I told her to go to the hospital which she did. By that time I had stopped sobbing more or less and Ming was finally released at 3am.

During all of those hours I had no idea how the children were and I had no idea what was happening with Ming. These were very dark hours. After the police station, Ming and I went straight to the hospital to see the children and families (except for one nephew who had been flown, with my brother, to Perth from the scene of the accident).

Well now I do know what was happening with Ming during those earlier hours. Two policemen sat on either side of him at a round table and he was questioned about every detail of the accident. Every now and then Ming’s voice caught on a sob as if he had been crying previous to the interview. He answered all of the questions honestly and politely and if he didn’t know, or couldn’t remember, that, too, was noted.

When asked to talk about each of the children, his voice went soft with emotion and a couple of times he sighed before he was able to go on with a steady voice. At no point did he attempt to make any excuses or defend his actions and when asked to state his own opinion of himself and what he had done he said, with no hesitation:

“Totally and utterly stupid.”

I am glad I watched this without Ming because of course it brought back the horror of that night and of course I cried a lot. But now I will be able to watch it with him calmly and help him make notes, although I didn’t hear him say anything but the truth so I don’t really think there is any need to add anything.

He has been charged with five counts of dangerous driving causing bodily harm and obviously he will plead guilty. We found out last week that the car insurance will not pay which is understandable but still a blow. I haven’t told Anthony this; in fact I told him the exact opposite because he sold some very precious shares that he has had for decades in order to buy Ming the ute on his last birthday.

And to top things off, the lawyer said that the barrister he has obtained for Ming charges $4,000 per day! I nearly fell off my chair at this almost incomprehensible amount of money and I have no idea how we are going to manage except that tomorrow I turn 55 and can access my superannuation so in that sense we are very lucky. I would have been panicking otherwise. Now I am just a bit shell-shocked!

This has already been a very long and hard journey in terms of the initial shock, the injuries and slow recovery of the children, and finally now the court case which may go on a bit – I’m not sure.

For many in my family there have undoubtedly been days of utter hopelessness and waiting so long for various splints and casts and braces to come off has been a test of endurance, not just for the kids, who have been magnificently brave and stoic, but for their parents, siblings, my mother, Ming and me.

Now, for Ming and me, there is a different kind of waiting – for the eventual sentencing. I had thought this would all be much faster and I’ve been kind of holding my breath, waiting for it all to be over, for Ming to take his punishment, and for all of us to be able to move on into our various next chapters.

Totally and utterly stupid.

Because there is no point in holding my breath – and I have been doing this for too long now, both metaphorically and physically. Breathing will become the focus of every new day and breathing will get us through the next few months of whatever and, best of all, despite the accident, we are all still breathing.

And for this I thank God, the ambulance attendants, the hospital staff, my family, but most of all I thank the five children injured for their heroism, generosity of spirit, humour, and love to Ming, me and each other.

75 Comments »

Another psychotic episode?

It is nearly 9.30pm here and I just got a phone-call from the nurse-in-charge at the nursing home who wanted me to calm Anthony down because he had, once again, become aggressive and was very confused. Ming and I tried, on the phone, to talk him into going to bed but he just kept ranting and mumbling incoherently and Ming gave up. I then tried, over and over, to convince him that nobody was trying to hurt him and that the staff just wanted to put him to bed, but it became impossible, so I hung up and rang the nurse back and she said she’d never seen him like this (she is his favourite nurse).

I asked if I should come in but she said no and not to stress and they would sit him down in the foyer (where he was apparently standing and yelling) and wait for him to become too tired to resist going to bed. When I apologized to her, she was so reassuring that it would all be okay that I nearly burst into tears, and, when I said “I can’t bear it for him that he is becoming so distressed so often”, she said something comforting about how she and the staff knew him, and knew that this was different behaviour, and that they were sad too.

Once I’d hung up the phone, I marvelled that I had taken Anthony to a special friend’s 80th birthday party today and he/we had had a great time, despite him being in a wheelchair and not quite ‘with it’. In her speech, the birthday girl even thanked Ants for coming to the party and that really touched me (she and my ma have been friends forever).

It has been suggested to me that taking Anthony out might not be a good idea because, when I take him back to the nursing home, he seems more confused and exhausted than before, and he is, quite obviously, becoming a difficult patient/resident. But, what the hell – I WILL continue to take him out, and bring him home, because I love him and miss him and I want to hold his hand. (I have always found couples that constantly hold hands slightly nauseating – ha – but now I don’t!)

PS. If anyone calls me wonderful or amazing I will bop them! This is just how it is – how it is.

Anthony listening to speech

This photo is of Ants three years ago, on his 75th birthday. He turns 78 in a few weeks – quite a survivor!

52 Comments »

Ming’s 20th birthday party

With around 70 guests (mostly 19-20 year-olds), a handful of parents, and a few of Ming’s older cousins, it was a resounding success. We did the lawns and madly tidied up beforehand:

IMG_2952

We set up Anthony’s ancient stereo system, which Ming has now figured out how to operate. It has the most amazing sound which some would call LOUD:

IMG_2954

We began to fill a cattle trough with ice and drinks as soon as it got a bit cooler (it was an extremely hot day):

IMG_2956

The first guests began to arrive and Ming was given some suitable adornments:

IMG_2957
IMG_29591551697_10151751500152242_1599184731_n

More guests arrived:

182964_10151751500202242_7026146_n

The pizzas arrived:

1522063_10151751500107242_170910890_n

I remained calm:

1533859_10151751501102242_1382723216_n
1010464_10151751501022242_338434537_n

Ming made a short speech dedicated to his favourite topic – himself:

1525078_10151751500247242_1037557457_n
1524936_10151751500302242_1742733848_n

There was a bit of cigar debauchery but nothing else untoward happened …

1545801_10151751500502242_1278512508_n

… Except for an unexpected pole dancer (my gorgeous, incorrigible niece):

1549501_10151751501927242_1369898150_n

Here she is again, slightly more subdued, with her brother and husband.

1535561_10151751501317242_354740975_n

Thanks, Ash, for rocking the party up a few notches, for taking most of these photos, and for making Ming’s party the best ever!

62 Comments »

Like father like son!

Today was very interesting – and hot! Ming and I had to go into town to do last-minute jobs in preparation for his birthday party. We had to collect hire chairs, pay in advance for delivery of pizzas, buy a new cord for Anthony’s old stereo, and numerous other jobs.

I was the driver and we were using the old ute (truck), but I was also the lifter of anything heavy (like 24-packs of bottled water, coke, beer etc.) It must have seemed a bit odd that the young, robust-looking boy-man chatted happily with various store owners while the disheveled, perspiring mother did all the lifting and driving. Occasionally I would say, “He’s just had a back operation. I’m not usually his slave.”

Once we had done all of these jobs and were on our way to see Anthony, I told Ming how much he reminded me of Anthony when he was younger. Well the conversation didn’t start all that pleasantly:

Me: Why the hell did it take you 45 minutes to pay for the pizzas? Do you know how hot it is sitting out here in this crappy old ute in the full sun, waiting?

Ming: Oh! Sorry, Mum, I was just having a chat. It’s a family-owned business and they were great people. Both their kids work for them. I’m so glad we’re getting the pizzas from here and they gave me a fantastic discount and free delivery!

Me: Okay.

Ming: What’s wrong?

Me: Oh I cannot believe how much you are like Ants! Everywhere we ever went way back when he was young and fit, he would leave me in the car, go into a shop to buy something simple like a screwdriver and not come out for ages and ages. I would become absolutely furious with having to wait so long and would eventually stomp into the shop to find him talking up a storm with the proprietor, other staff, random customers, with everyone laughing and joking, with Anthony the loudest of all. He’d spot my scowling face and yell out, “Jules! Come and meet ….” and I would smooth my face back into a smile and join the ‘party’.

Ming: Do I do that?

Me: Well, yes. I mean you haven’t yet transformed a screwdriver purchase into a party but you certainly do know how to turn the mundane errands into social occasions. You also have a very loud presence.

Ming: So I’m like Dad was before I was born?

Me: Yes.

Ming: That’s great!

Finally, after all the jobs were done, and the ute was loaded up with chairs, drinks and other odds and ends, we went to the nursing home. I had asked Ming to help me explain to Ants that last night’s incident might be due to the paranoia which comes with Parkinson’s disease (he doesn’t know he has the dementia part). Our main task was to reassure Ants.

As we entered the nursing home there was a little flurry – the nursing manager pulled me aside and asked me about last night, a nurse going off duty told me she had tried to ring me this morning to say Ants was fine now, the nurse in charge for the afternoon and evening thought it might have been due to a new staff member last night. She even felt his antagonism might have been justified in some way and not just due to paranoia. Apparently Anthony had made the nursing home headlines in terms of drama!

All of these rushed conversations happened out of Anthony’s earshot of course and, meanwhile, Ming had already gone into Anthony’s room. Once I entered, Ming said, “Okay, Mum close the door so we can have a family conference.” Then we all sat close to each other and, after I kissed Anthony’s bleak-looking face and saw the anger in his eyes, Ming and I began to explain about paranoia and that if it happens again to remember that is is part of PD. I was so proud of Ming.

Ming: Dad, if you get like that again, really scared, you have to trust us on the phone because we don’t lie to you. The nurses were just trying to put you to bed and give you a pill.

Me: Ants, you were shouting at everyone, even me, that we were bitches.

Anthony: Well you are.

Me: Why me?

Anthony: You should have come in to help me.

Me: No Ants – I am not going to come all the way in here from the farm late at night just because you didn’t see me that day. How do you NOT know how much I love you? I was so worried last night and you made me cry!

Ming: Shut up, Mum, he doesn’t need to hear that. Dad, listen to me – you can’t go around calling nurses bitches okay!

Anthony: Why not? They took me to another town and then wouldn’t help me and someone is trying to get my money.

Ming: Dad, you are imagining some of this stuff because of the Parkinson’s.

Me: You know how you get those hallucinations and if I tell you it’s because of the Parkinson’s, you can cope?

Anthony: Yes.

Me: Well, I’ve been doing some research and paranoia is also part of Parkinson’s so, late at night, when the nurses are putting you to bed, you might think they aren’t nurses. Is that what happens?

Anthony: Yes.

Ming: So, Dad, you need to always remember that they are nurses and they are looking after you. If they ring us and we talk to you at night, you HAVE to trust us, okay?

Anthony: What about the bitches?

Ming: I know – they’re everywhere.

Me: He’s kidding, Ants!

The conversation was much longer and more convoluted than this, but Ming and I ended up laughing when we were able to tease a half smile into Anthony’s face. This was after he whispered to his father to swear in his head and not with his mouth.

I think next time I get a phone-call from the nursing home like last night’s I will hand it over to Ming. They are so uncannily alike!

img121
img122
IMG_0759

I think one of the best things about our three-way relationship – father, mother, son – is the soft-slicing honesty with which we have always communicated with each other. In this we are very very fortunate.

Oh yes, and the other interesting thing is that Anthony’s own father died when Ants was around Ming’s age and I remember Anthony telling me about how his dad was a lot of hard work beforehand, and that they clashed a lot. Ming clashes with Ants a lot too but today he broke the record in terms of compassion and, even if we get another alarming phone-call from the nursing home tonight, we will all be okay – all three of us.

64 Comments »

Parkinson’s disease and paranoia

Well I was wrong about Anthony not remembering last night’s incident. I just spoke to him on the phone earlier this morning and he said ‘they’ are doing terrible things to him and that last night he decided to fight back. “I wanted you to come in and see they are testing me.”

I tried to explain that the staff were just trying to put him to bed, but he wouldn’t accept that and so I said Ming and I would be in this afternoon. He said okay in a tired, defeated voice.

Since then I’ve been looking at various articles about Parkinson’s disease (PD) and Parkinson’s disease dementia (PDD) that discuss paranoia and psychosis in the latter stages of the disease. The fact that Anthony remembers last night, and still maintains that he is somehow under attack, indicates that paranoia has well and truly landed on our doorstep.

In the literature about PD that I’ve read over the years, it is stated by many that symptoms like hallucinations and paranoia are not only symptoms of the disease but may also be side-effects of the medications. What a dilemma! Ants has had hallucinations for years and lately I have noticed them getting worse (not in a disturbing way – it’s usually just dogs in the room) but in terms of frequency.

The increase in hallucinations exacerbates the paranoia because if Anthony thinks a tablecloth is his dessert, or that a dog is sitting on top of his television, or that Ming is sitting in an empty chair, or that a spoon is a lizard or that the polka-dots on my shirt are flies, then it stands to reason that he might also see a nurse as a torturer. Especially if it is late in the evening and he is already tired and confused.

It probably seems harsh that I yelled at Anthony on the phone last night but I have found this to be quite effective in the past when gentle words don’t work. Cruel to be kind I guess and it kind of shocks him into a tentative acceptance of what is going on. Last night he didn’t believe me that the nurses were nurses until I yelled at him. Obviously, if I lived closer than a half hour drive I would have gone into the nursing home, and maybe I should have gone in anyway, but the nurses reassured me on the phone that Anthony had calmed down a bit, so I let them handle the situation and I hoped for the best.

In the past, it has helped Anthony a lot when I have explained the link between PD and hallucinations so this afternoon, when Ming and I see him, I am also going to tell him about how paranoia is also part of his condition. I think if he knows this it will help him cope better with the night time ritual of being put to bed by the nurses.

Time will tell.

The photo is from two years ago with ‘Doc’ (now deceased) on Anthony’s lap, and ‘Jack’ the Irish terrier we got Anthony as a surprise birthday present when he still lived here at home.

IMG_0228

38 Comments »

One hour

It is 8.30pm and I haven’t seen Anthony today because Ming and I have been so busy cleaning up and organizing things for his 20th birthday party on the weekend. With at least 70 people expected, I am, to say the least, a tad nervous, but they are all wonderful kids, and a few of the parents are coming too in order to help keep things on an even keel!

So it is one of the rare days I haven’t seen Anthony. I warned him of this yesterday and he was okay about it and I tried to ring him a few times today but then gave up. He has definitely forgotten how to answer his phone now and I am becoming as frustrated as the many friends and relatives who keep trying to ring him.

When the nurse rang me half an hour ago, I was shocked to hear Anthony yelling ‘you bitch’ over and over in the background and when the nurse got me on the phone to him, he yelled at me too. Ming tried to talk him through taking the sedative (only needed occasionally) to no avail, and the nurse said she would ring me later. In the background I could hear Anthony yelling “get away from me, you bitch” and “Jules! Help me!” and to Ming, “I’m being tied up, Ming!” and “You’re like the rest of them, Jules, you bitch” and “I don’t trust you, come and get me right now, Jules!”

And this went on and on over several phone-calls back and forth from staff to me. This kind of episode doesn’t happen often – maybe once a month – so last time I took Ants to our doctor, I asked for something to calm him and he prescribed it. Tonight I said to the nurse-in-charge who first rang me that there was an emergency drug for this but, during a later phonecall, I could hear Anthony yelling “No!” and the nurse told me he wouldn’t take it or go to bed.

Sobbing with anxiety, I ended up yelling at Ants on the phone to pull himself together, take the pill, go to bed, stop yelling at the nurses, and that I would see him first thing in the morning. When he didn’t calm down, I screamed at him over the phone: “Stop it, Anthony, stop it! This is not you – it is the stupid disease – I will see you TOMORROW!”

I think he finally accepted this and the nursing staff said he was calming down and they would only ring me back if things escalated again.

And tomorrow? He won’t even remember. So was/is this a psychotic episode? Hallucinations? If so, what triggered this – not seeing me today?

But he sounded so terrified, hence his uncharacteristically abusive language. Five phone-calls, five minutes x five, and five moments when I decided to stop crying and to start yelling at him.

Will he be asleep by now? I don’t know, but I am so tired and defeated and shocked now that I’ve decided not to care about it until tomorrow. Otherwise I will go mad.

It is 9.30pm.

55 Comments »