jmgoyder

wings and things

Jan 10

Like father like son!

by jmgoyder

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.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Dec 29

An unexpected gift!

by jmgoyder

On Christmas Day, my mother (Meg) came over to the farm to have lunch with Anthony, Ming and me. Well, actually she brought lunch! You see we always have Christmas Eve at my mother’s place and she puts on a FEAST, so I figured I could cheat this year and not bother with my own feast and just feast on her leftover feast and that was a great decision haha! She even brought half of the giant pavlova which Ming and Anthony vacuumed down in record time.

Anyway, before we ate, my mother handed me a letter. “This is your surprise,” she said. I already knew she was bringing me a surprise and she had hinted it was a wheel of Jarlsberg cheese (my favourite), so when I opened the letter to read it I assumed that, instead of the cheese, she had decided to write me a loving letter. I already knew she loved me so I was about to say that I would prefer cheese until I began reading ….

18 December, 2013

Dearest Meg,

For many years back at each Christmas Rhonda, Geoff, John and myself, instead of giving to one another, look around to see where we might better place our giving – to someone needing a little tangible help. (We still give to each other a “little something”)

We have had Juli and Ming’s situation in mind, as in prayer, but we thought we should tread cautiously as not to offend Juli’s present somewhat fragile state of mind. So we did take our thoughts in another direction only to find what we had identified had already been resolved. We asked, what was the Lord saying to us?

Meg, we felt we needed to run this first by you as we would not like to add to the stresses Juli is undergoing, and the amount is really quite insignificant in light of what is down the track for her. Can we leave it to your judgement as how best to hand the money on to Juli. She does not need to know from whom it came. Note the cheque is payable to you.

We continue to pray for you all every day. We share your heartaches. We can’t begin to understand the feelings involved but we do understand the love of family and, of course, our love for you has always been a gift from God.

Sincerely,

Bev and John

So I read this letter out loud to Anthony and Ming while my mother smiled knowingly. When I got to the word ‘money’ I began to realize what was going on and my heart started catapulting with a mixture of excitement and anxiety (but mostly excitement). Then, my mother handed me a checque for $1,000!

I/we could not believe it! Okay so I remember vividly playing underneath Bev’s and John’s kitchen table with Rhonda when we were very little, and, more recently, I remember re-meeting Bev and John when they visited the farm with my mother several years ago but, despite how close these friends are to my mother, I don’t really know them very well because they live on the other side of Australia.

Bev, John, Rhonda and Geoff – I am at a loss as to how to thank you properly for this unbelievably generous gift of money, but I will try here: the court costs are going to be big but you have already covered the initial payment to the lawyer. I was so scared I wouldn’t be able to raise the funds and now I am not so scared, not just because of your amazingly generous gift but also because something about your gesture has eradicated all of my fear. My words are clumsy with gratitude – ha!

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Dec 28

Recovery

by jmgoyder

My mother and I went down south yesterday for an overnight visit with my younger brother’s family on their beautiful, remote block of bushland. Ming was supposed to come too but he is still struggling with post-op. pain and that horrible post-anaesthaesia blah so I left him home (and the little break was good for both of us!)

It was the first time we had seen the kids minus their various braces, splints, crutches and wheelchair (due to injuries sustained in the accident in October in which Ming was the driver). Of course, they are not completely recovered, but they are certainly getting there in leaps and bounds.

And they glow! These three children, one 13 years old and the twins, 12 years old, have always has a special glow about them. They are high achievers (as was evidenced in the school report cards they eagerly showed us), but they are down to earth and philosophical about the trauma they have been through. I watched my mother relax into their antics – watching them swimming in their beautiful, blue dam, making crazy jokes, doing card tricks, riding the 4-wheeler, munching out on my brother and sister-in-law’s amazing steak, potato salad, coleslaw and then pavlova, and my heart did a few somersaults.

We exchanged our Christmas gifts with each other and everyone loved what they gave and received, and I bantered with my nieces and nephews, unable to keep up with their clever witticisms, as usual! My brother’s quiet chuckle and my sister in law’s loud laughter (she and I are both rather loud and vociferous), and the children’s glowing eyes, were like some sort of blessing.

Another bonus was seeing my brother’s second oldest son who is a young replica of his dad. He adores me of course but soon needed to leave to see his mates – haha! As he was leaving, I said that I had a Christmas present for him and I wanted one back so he said have a beer. It was only later that I discovered that they weren’t his beers to give – cheeky, gorgeous brat! My gift to him was super hot chilli sauce – mmmm – he might not adore me so much any more! On a more serious note, it was great to be able to hug him after so long.

Driving back home through the forests of karri trees, my mother and I spoke of how this visit had helped to lighten the load of unbearable grief and anxiety. I am not a grandmother (and probably won’t be for some time!) but I can imagine how horrific it would be to be the mother and grandmother of so many injured (either physically, emotionally, or both) by the biggest mistake in judgement Ming will ever make. The relief that four out of the five injured are almost back to normal is immense.

Now of course the hope is that my other brother and sister in law’s daughter, whose recovery will take longer, will soon be back to normal and I have never realized before how beautiful ‘back to normal’ is, until now. She, like the other children, has a quirky sense of humour and has been heroic in wearing a head-to-hip brace for soooo long now, with style and stoicism beyond her years.

I don’t think anyone in my family has ever been through a more difficult few months. Geographical distance, misunderstandings, frayed emotions, private versus public dilemmas, forgiveness, underlying resentments, joyous reunions, hugs and recriminations, guilt, fear, love and bewilderment have all factored into the way we adults have coped in the aftermath. So the recent past has been ghastly, the present is sliding into a cushion of peace, and the future is, as it always is, uncertain.

The cushion of our visit down south is what I will rest my head on tonight because sleeping properly has been impossible for so long; my mind races back to that night constantly. Tomorrow I have decided to wake up, smile, and live again.

It is all getting better, not worse: recovery.

Family Friendship Grief Happiness

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Dec 7

Not a one-way road

by jmgoyder

25 years ago, before Anthony and I were married, I would often travel the two hours from Perth to the farm to spend the weekend with him (he rarely took a day off). I would turn into Paradise Road – the short, narrow road leading to the farm – stop my car and quickly refresh my lipstick, powder my nose, spray the perfume he gave me onto my neck, fluff up my hair, then zoom the remaining half mile with my heart beating madly in anticipation.

I would arrive to a shout of “JULES!” the scent of a chicken roasting in the Aga, and a hug that would nearly crush me. There would be beer, maybe a visitor or two, willy wagtails flitting here and there, and the beautiful, comforting smell of cow dung in the outside air. There would be Anthony’s bellowing laughter, my latest anecdotes about university and the nursing home where I worked, a lesson in gravy making, a beautiful meal, a favourite comedy on television and lots more hugs.

We were in love.

Now, I head in the other direction up Paradise Road to go into town to pick Anthony up from the nursing home and bring him to the farm for the afternoon. Even though I retain a tiny shred of that anticipation of 25 years ago, it is tainted with a kind of exhausted dread because I know the afternoon will be difficult. There will be no bellowing laughter, very little conversation and there will be a lot of dangerous occurrences when Anthony tries to do things he can’t do anymore – like chopping wood, washing the car, mowing the lawns, fixing the gate. I will secretly (through the kitchen window) watch him try and give up, then I will watch him stand outside, swaying slightly whilst leaning on his walker, then I will ask him to come back inside. If I hover over him it makes him feel inadequate, so I don’t but as he has had so many falls, I get anxious. I watch him struggle for half an hour with things I could do in minutes (like opening a gate, washing the dishes), and I try to breathe slowly and patiently. If he begins to do something ludicrous (like wind a clock with a knife, drink from the sugar bowl, talk to people who aren’t there) I sometimes intervene and not always gently! And he has no idea how absolutely exhausting these days at home are, no idea of the guilty relief I feel when I can take him back to the nursing home, no idea of how much my heart breaks when he says, “But why can’t I just stay here with you?”

During the drive back it will be the same halting conversation:
Me: I can’t manage you at night now – you know that, Ants – you’re too heavy.
Anthony: But I’ve lost so much weight.
Me: I know but you are still too heavy and Ming isn’t supposed to lift either.
Anthony: I’m better than I was Jules.
Me: Yes, but you still have Parkinson’s disease.
Anthony: I miss you so much – please never leave me.
Me: Idiot! Of course I won’t leave you! Ever!
Anthony: That’s good then.

We are in love.

Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Nov 14

Calm before the storm?

by jmgoyder

Today Ming was charged with a crime (related to the car accident four weeks ago) and the case will be dealt with in court in the next month or so. After the police station, he and I went to the criminal lawyer recommended and we were given some very good advice. It has been a day full of expected shocks and unexpected shocks, like the possibility of jail, but Ming is okay with whatever punishment he receives for this stupid mistake in judgement. He is more concerned for the children who were injured in the accident and so am I.

It doesn’t bode well for Ming but neither of us care about that because it is nothing compared to the mix of relief and anxiety about all of the children’s recoveries and healing, especially my girl still in hospital, and my boy having to bend his leg for the first time tomorrow, and for the friend whose broken arm got infected, and to my two girls who are still in neck braces.

The fact that none of the families have laid blame on Ming has been a wonderful thing but that is irrelevant to the case and to our concern for the kids. I already loved those children but, until now, I didn’t know how much and it is up to the sky and beyond.

I hope that this temporary calm will make the inevitable storm more manageable for all of my family and us but obviously we will have to all wait and see in different ways.

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Oct 31

Parkinson’s disease dementia and night terrors

by jmgoyder

I have just gotten off the phone with Anthony for the third time in the last half hour. He is terrified and this is happening more and more often at around the same time of night. Tonight he thinks several people are trying to tie him up, that his house is being rummaged and wrecked, and that I am part of a conspiracy to hurt him. Ming and I have both talked to him and I have also rung the nurse in charge to tell her how distressed he is and that he is confused. She said they had tried to put him to bed (sometimes it takes two or three people) but he fought them all off. I told her he didn’t know what was going on and that we were seeing the doctor tomorrow to get emergency medication for this kind of hallucinatory agitation.

Our farm is a half hour drive away and I feel like I should sell up and buy a unit near the nursing lodge so I can be closer for these night terrors because for him to be this frightened is unbearable for all of us. I know/hope that in the short time it has taken to write this post, he will most probably be in bed and nearly asleep because in the end Ming and I managed to calm him down a bit – very hard to do over the phone.

The prolonged emotional agony of this disease, for all three of us, is like treading water in a strange and unfamiliarly large pool of murky water, and can change within the space of an hour. Earlier, when I rang Ants, he was fine and lucid and gorgeous. His words don’t come out very well any more so I was shocked by tonight’s frantic eloquence and his absolute terror. My feelings of helplessness are like jagged jigsaw pieces accidentally placed in the wrong box – futilely useless.

I love him so much.

Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers

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Oct 23

The dangers of driving on gravel

by jmgoyder

It is nearly two weeks since the night of the accident in which my son was driving with four of his cousins and one friend in the back tray of his ute/truck. My family has learned so much from this, including the extent to which we love and respect each other. Responsibility for allowing the kids to go for a little ride has been shared and discussed, hugs have been exchanged, forgiveness has been a constant source of comfort to all I hope, but self-forgiveness is not so easy – not for me.

Even though I was the only one inside the house and didn’t know that my son had taken off with the kids for a second little ride, I should have already had a rule in place that this was absolutely forbidden. After all, it is against the law to have unrestrained passengers in the back tray of a ute. If I had had this rule in place, this wouldn’t have happened. Why didn’t I have this rule? Because it never occurred to me that my son would do this; he is such a cautious driver and has the reputation of driving like a granny! When they all came back from the first little ride and I realized they had been off the farm, I said to my son, “don’t do that again will you” but I should have said, “YOU WILL NOT DO THAT AGAIN!” If I had said that, this would never had happened. We are all struggling with our own ifonlys, but these two are mine.

What matters here is that, despite all five children sustaining serious fractures, with one still in hospital for some time, the longterm prognosis for all is full recovery, physically. Psychologically and emotionally, I think their recovery may be more complicated but as the young are so resilent, I hope and I pray that they will all unremember the terror of that night. For those in my family, who drove crazily around the outskirts of this country town, after my son’s panicked phonecall, looking for all of them, when they were only 2 kms away, the memories of our fear and horror will take longer to fade.

My son did a slow U-turn on bitumen, and was heading home again when he hit gravel and accelerated a bit, turning the steering wheel from left to right, just slightly, to give the kids a little thrill, and that is when he lost control and the ute fishtailed (I think); he tried to control it by braking, and steering it back, but nothing worked even though he was going less than 40kms.

If he had been speeding, hooning, drinking or a reckless person, this could have been worse. If he had coerced the children and snuck away for a little joyride, against our wishes, this could have been worse. The fact that everyone survived, and will recover, is the thing I tell myself each morning when I wake up to the horror of that night on constant replay.

When driving on gravel, be aware that your tyres only have half the grip they would on bitumen.
When driving on gravel, do not accelerate suddenly, even a little bit.
When driving on gravel, do not brake suddenly, even a little bit.
When driving on gravel, always go very slowly.

Nobody in this family – my beautiful family – will ever hop into the back of a ute again. Nobody in this family – my beautiful family – will drive without caution on gravel roads from now on.

My heart leaps with joy that everyone will be okay longterm, but his post is primarily to warn people of the dangers of driving on gravel, especially in a ute, and to never, ever, let your children get into the tray, no matter how much they want to, no matter how short the ride.

I am so sorry.

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Oct 9

A perfect arrangement

by jmgoyder

Ming offered to pick Anthony up on Monday and bring him home for the day, then take him back to the nursing lodge in the late afternoon. I can’t believe how much this improved the day for me! It was so wonderful not having to make the two trips, each of which takes around an hour if you count the time it takes to get Anthony in and out of the car and then back into his room at the lodge. It was also great fun for Anthony to have his big son driving him around and Ming got to spend time with Ants on his own during the trips to and fro.

When I take Anthony back to the nursing lodge he often gets really unhappy and sentimental, and saying goodbye for the evening is sometimes a bit tearful for both of us. But with Ming, this doesn’t happen so that is a real bonus. This arrangement was also great because, having done the two trips with Anthony, Ming didn’t feel he had to spend every minute of the day with him. This can be a bit of a strain for Ming, especially when Anthony isn’t making any sense or doesn’t speak at all.

Anthony and I spent most of the morning in the kitchen while I made chicken and vegetable soup for our lunch. Then he wandered around the farm (wonderful!) until he became too wobbly. Back in the kitchen he watched me make a blue cake while we caught an old episode of Midsomer Murders on the television. The cake wasn’t quite cooked when it came time for Ming to take Anthony back so I surprised him with it on his return. As you can see, he was nonplussed.

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Ming said he will drive Anthony back and forth whenever he can. This is a perfect arrangement.

Family Friendship Grief joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers

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Sep 8

I will not lose my sense of humour!

by jmgoyder

Yesterday and today, despite visits from many friends and family, it was just Anthony and me. Yesterday his eyes got wet when I had to leave, and today his eyes went blank when I had to leave because he didn’t understand why I had to come home and leave him at the nursing lodge.

I wish I could laugh it away.

Family Grief joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers Wings

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Jun 17

Subtle and sudden shifts

by jmgoyder

Anthony’s recent shift from despondency to humour has been gradual, subtle, under-stated, whereas my inexplicable shift from sad to happy has been sudden and boisterous.

I know that part of these shifts are to do with our mutual acceptance of the reality of our situation but, if so, why didn’t we accept this months ago?

Oh who cares why – we are happy again!

Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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