jmgoyder

wings and things

Say ‘cheese’!

Today is Anthony’s 78th birthday – February 4/1936. Ming and I didn’t do much for our January birthdays in terms of gifts because we decided to ‘save’ our birthdays for Anthony’s, if that makes sense. Ming is about to go and pick Anthony up from the nursing home to come to the farm for the afternoon. As Ants can’t deal with crowds anymore, I have just asked a sprinkling of people over; after all, it is a workday, not a weekend.

Ming suggested we get each other two presents each so he and I exchanged ours this morning. I will show you more of the ‘goods’ later when I have photos, but just want to show you what Ming got me!

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Well, technically, the blue cheese is for Ants but we all know that I will eat most of it!

Ahhhh – cheese bliss!

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Listen to me!

It is over ten years since I completed my PhD in cultural studies; my thesis focused on the importance of listening to the storying of people with Alzheimer’s Disease. It was not a scientific thesis (and at the time I had no idea what the difference between qualitative and quantitative research was); it was more of an exploratory study of the art and gift of listening.

My interest in how listening might help/give comfort was inspired by the various patients in the nursing home in which I worked at the time – in particular a guy who I called ‘Joe’ who seemed to think I was his long-deceased fiancee.

After I graduated, I rewrote the thesis as a book and it was published – We’ll be married in Fremantle. This is not a plug for the book, as it was published way back in 2001, and not a best seller by any means, although it was shortlisted for various prizes for nonfiction.

I remember Anthony being so proud of me, for the PhD and then the book (Ming was a little kid then and Anthony was in good health), but I also remember, after all those years of academic study, how the simple art of listening would always be important to me.

Listening isn’t as easy as it sounds because sometimes it is difficult to shut up, refrain from giving advice etc. I make this mistake all the time with Ants and Ming (for different reasons, obviously), but now I am re-learning my own advice – to just listen.

Tonight, Ming said, “Mum, just listen to me!” and I did, and I shut my mouth, and I learned more about my open-hearted son than I have for ages.

Okay, before I get too sentimental, we are getting some ducklings tomorrow to keep our only duck company – I am so excited!

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Thank you, Brian

This morning Ming and I had an appointment with the prison chaplain, a beautiful man who is the Anglican priest who, coincidentally, helped enable Anthony’s admission into the nursing home two years ago, and a good friend of my mother’s.

We met in his home and he did a wonderful job of demystifying prison (just in case Ming has to go there), and allayed many of our fears and concerns about things like violence, drugs, rape (obviously my worst fear). He told us that if the worst scenario (prison) eventuated, when Ming is finally sentenced, he will be in no danger as long as he doesn’t get involved with various unsavoury activities (drugs, alcohol etc.) If a prison sentence happens, Ming would undoubtedly be put in the low security section, and given a job of some sort (kitchen or gardening etc.)

While the three of us talked about the improbable possibility of a prison sentence, the prison chaplain must have wondered a bit about the difference between Ming’s reaction to this information (curious) and mine (tears – just a few; I got hold of myself), but he took it all in his stride and spoke calmly and wisely to us.

It was a bit terrifying for me to hear about the prison situation, but now I am no longer so afraid, thanks to this wonderful, wonderful man/priest. Ming’s reaction to our meeting took hours to happen. He was calm when he handed in his resume for a job at a restaurant, calm having lunch with me, calm during a Centrelink appointment, calm during a visit to Anthony while I did some errands.

But then, on the way home, we had one of those horrible yelling-at-each-other arguments (been having a few lately) but, once home, we decided to talk it through and we did this for over an hour until we sorted it out:

Me: So what is your main problem with me at the moment?
Ming: Your geese poop on my shed doorstep and your peacocks poop on the car!
Me: So you are more upset about the birds than the possibility of prison?
Ming: No, yes, no!

We are both fine again now, having sorted a lot of things out and I am so thankful for the fact that he and I can be honest with each other and get over/through these wrangles but it is so exhausting!

I think I might need to visit that wonderful priest again – soon. His name is Brian and he is a legend!

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Surreal

I saw Anthony this afternoon at the nursing home, and I showed him my blistered, peeling, bleeding hands and feet and told him that I had seen a doctor who had prescribed cortisone cream.

The doctor was more fascinated than concerned, when I told him I thought I had ‘pompholyx’. So, while I scratched away at my itchy hands and feet, he looked it up and confirmed my self-diagnosis. I just wish he hadn’t insisted on looking at my always-dirty-from-the-chook-yard feet – oh well.

Anyway, as I was telling Anthony all of this in my usual dramatic way, he pointed to his own hands and said he had the same thing. Well of course he didn’t have the same thing – it was just skin cancers on his old hands but I appreciated his empathy.

But then he whispered to me that it might be Parkinson’s disease and this is how our conversation unfolded:

Anthony: There is a doctor here who knows about it.
Me: About what?
Anthony: Your hands, this – he has black hair, young guy.
Me: Is he the doctor replacing the one on holidays?
Anthony: I don’t know, but don’t trust him, Jules.
Me: Why?
Anthony: He wants all of the Parkinson’s people in an experiment.
Me: Oh Ants it’s probably just a student doing a survey – is he asking you questions?
Anthony: Yes, personal. Don’t tell him anything, Jules.
Me: Ants, do you think you might be imagining or hallucinating some of this?
Anthony: I don’t know, maybe – oh and the family came this morning to take this place over.
Me: The Goyders?
Anthony: Yes – there’s a lot of money – be careful.
Me: I’ll check it out if you check out that whole doctor thing.
Anthony: One of them has red hair.
Me: That’s the priest isn’t it?
Anthony: No, the doctor – another one….
Me: I have to go now, Ants but I’ll be back tomorrow.
Anthony: Why do you have to go?
Me: It’s getting late, I have to get groceries, go to the chemist and look after Mingy.
Anthony: But where do you live now?
Me: I live at Bythorne, silly, on the farm!
Anthony: Do I still have a corner room there?
Me: Yes, but I can’t look after you overnight now because you are too heavy.
Anthony: But it’s still my farm.
Me: Your beautiful, beautiful farm, Ants, and Ming and I are taking care of it.

After this conversation, we hugged and kissed and I came home to Anthony’s resounding absence.

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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!

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Another little blog break

One of the unexpected bonuses of blogging for me has been the very real friendships formed, the mutual support, the shared humour, the shared grief. The lessons of life that I have learned through other people’s stories, and interactions, have taught me how to better do empathy and sympathy, and forced me to feel the difference.

Thanks so much for those of you who have commented, ‘liked’, and given me your friendships. For those of you who are bloggers, I am struggling at the moment to keep up with your writings, so please forgive me for that. For Facebook friends, same thing really!

Ming goes to court in three days. Apparently he and I simply appear, his charges will be read out, and the case will be adjourned by our lawyer until the end of February. So I really need to concentrate on all of this at least until the beginning of February, and blogging will go on the back burner for the time being.

Hard to believe now that when I began blogging it was all about the birds.

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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):

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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.

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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.

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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!

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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!

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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!

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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.

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