jmgoyder

wings and things

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.

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Dec 6

Learning how the law works

by jmgoyder

Today Ming and I met with his lawyer for the second time and his barrister for the first time. The barrister was just as honest and down-to-earth as the lawyer, but she did warn us that jail is a possibility because five children were injured. I suppose there is no point in panicking about this yet as the court date still hasn’t been set (but of course I am panicking). Apparently the police report will be sent to the lawyer and he will send it on to us but I am not sure how it all works. The seriousness of the children’s injuries has been our main concern over the last two months so I guess I hadn’t (until now) realized how serious the repercussions might be for Ming in terms of his charges and sentencing. Thanks for all the thoughts, prayers and comments for our extended family and I’m sorry I haven’t answered all of them. I am also extremely grateful for the testimonials send to us on Ming’s behalf because apparently these will possibly have an impact on the judge’s decision. I am not going to write about any of this for awhile because it’s too difficult but, again, thanks so much for the support!

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This photo was taken two years ago, before everything began to skew.

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Dec 5

Dangerous driving

by jmgoyder

I haven’t written about the car accident for awhile because I have been too anxious and shaken, and have not wanted to publicize details that might seem like an invasion of privacy. So I haven’t posted photos or named the children for this reason and will not do so now.

For those who don’t know, eight weeks ago today, Ming took his little cousins and a friend for a ride on the back of his ute (truck), then lost control on gravel about 2 kms from home. I do not want to replay the horror of that night or talk about the details. Instead, I want to say how grateful I am that everybody is recovering well despite multiple fractures including spinal and that yesterday we got the good news that two of my nieces got their neck braces off and the one nephew will hopefully soon be able to walk again (but I don’t know how soon). The friend is recovering well from her badly broken arm but her best friend, my niece, will still be in a neck-to-waist brace for many weeks (she is the one who told me to stop inboxing her, beautiful brat!)

My whole family continues to support each other, with humour, empathy, a couple of arguments, reconcilations, renewed love for each other and enormous mutual support. So I am very proud to belong to such a family – my mother, brothers, sister-in-laws, and the kids – where forgiveness and generosity are so natural.

Ming has now been charged with five counts of dangerous driving causing bodily harm and tomorrow we see the lawyer and barrister who are taking his case. My family and friends have provided many character references for him that will hopefully help but we still don’t know the court date.

In Australia there are three levels of driving offences – careless driving, dangerous driving, and reckless driving, so Ming is in the middle. Of course I am terribly worried but I didn’t realize how worried I was until the wash of relief that all of the children will be okay – even my niece who is still in the brace and oh how I wish I could wear that bloody thing for her.

On the cusp of what if? it is difficult NOT to imagine how much worse this could have been. Yesterday, at another family get together, the children all said how haunted they were still and my heart breaks that they have this memory. I guess it will stop any of them from driving dangerously.

Ming, despite being very open about everything else in his life to me, is strangely silent about the accident and seems to just want it to go away. I understand that and I also understand how reading the character witness statements upsets him. Despite his shock and remorse and anxiety about the kids, he has that attitude of moving forward. I don’t understand his resilence any more than he understand my lack of it.

Dangerous driving is dangerous driving so please warn your younger loved ones that a joyride of this type is not worth it.

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Dec 4

Dementia is not contagious!

by jmgoyder

A lot of people are afraid of dementia, whether it be Alzheimer’s Disease, Parkinson’s Disease Dementia (my husband Anthony’s type), or other variations. It isn’t just the fear of developing the disease one day, it is also the fear of anyone who has the disease.

As someone who worked in nursing homes for many years, dementia doesn’t scare me at all but I guess, if you haven’t had that kind of experience it could be scary visiting a loved one who used to be the life of the party, or extremely energetic, or with a dry, sarcastic wit (Anthony) only to find them either silent or saying what sounds like nonsense.

But it’s not that scary once you get used to it – it’s not! You learn how to listen differently, you learn how to be comfortable with silence, you learn how to love the person again for what he or she is now, instead of pining for an impossible past. You learn to be unafraid, you learn how to give, you learn how to go with the flow, you learn how to treasure each and every moment no matter how bizarre or strange.

“I just want to remember him/her the way s/he was” is a common sentiment expressed by friends and family of people with dementia and this is understandable, yes, but it is also cruel and selfish and horrible because people with dementia are not dead. People with dementia might be confused, cognitively, but there is nothing confusing about the emotional need to be hugged or acknowledged or visited. Why is this so scary for so many of us?

Before this happened to Anthony, and despite my nursing experience, I, too, found it incredibly difficult to visit people I knew who had developed dementia on top of everything else they were already suffering. Can you imagine how terrible it would be to be so sick, so confused, and then abandoned?

There are not too many visitors at the nursing home where Anthony resides and, when I was a nurse, there were very few in the three nursing homes in which I worked. Loneliness is universal and has nothing to do with age or dementia. People with dementia are lonely; people with dementia are human; people with dementia are often aware of the dementia and need comfort and reassurance, or just a hug. A 5-minute visit is enough to make a bad day good.

This is not about Anthony exactly because he gets a lot of regular visits from family and friends but, because I am in there nearly every day, I see the blank, lonely expressions on many of the other residents’ faces and have now made friends with several people there who never seem to have a visitor. I have also made friends with the relatives who do visit but we are a tiny group.

And the point of this little rant? If you have a friend or relative with dementia, please don’t abandon them. They need you. If they don’t recognize you, so what? Just give that person a hug or a pat on the shoulder and then you can go back to your life knowing that you will probably have made that person’s day shine!

BTW dementia is NOT contagious! (Anthony said that to me today).

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Dec 3

When every day becomes yesterday

by jmgoyder

When Anthony was home yesterday he kept talking to the television. I would come in and out of the kitchen where he was sitting (his favourite spot) and enter an already-there conversation. I was busy with washing and other chores (something I continue to do even if Ants is home, just to keep things normal-ish), but every time I came back into the kitchen he would be talking to one of his deceased brothers, or to the now-dead stove, or to the dogs on the table (hallucinations).

Ming cannot stand it – he just can’t. He says, “Mum, I love Dad but I just can’t tolerate him!” I understand his point of view; after all, he is only 19 and his dad is nearly 78. On the shy side of 50, I am in the middle of this all the time so, when Ants comes home – and I do this as much as possible – I leave Ming with him while I go to the toilet to cry. No, not self-pity – just so hard to remember how good it once was and how bad it is now.

I miss all of our wonderful yesterdays just as much as Anthony does. But Ming doesn’t remember and he has no recollection of Anthony ever being well. Every day, lately, he has asked me for a hug and every day I have given him a hug, even after our ferocious arguments, about the car accident, about many things….

Sometimes it is hard to be positive but I have enormous faith in both Ants and Ming and I think that is reciprocated to me. I hope so.

SANYO DIGITAL CAMERA

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Dec 2

Who are you and why are you so nasty?

by jmgoyder

I have a rather nasty taste in my mouth at the moment because I have been reading about some people’s taste for nastiness, or cyber-nastiness to be exact – well that’s what I call it anyway. A few moments ago I saw a lovely photo on Facebook (yes I am back on it!) of a black man reaching his hand out to a white baby.

I liked the photo and its caption and found it heart-warming. So I was surprised to read some very nasty comments and interchanges in response to the photo. Various critical points were made by some and phrased politely, but other people became quite hateful in their comments.

Lately I have been seeing more and more of this on the internet – people voicing nastiness with such ferocity it is breathtaking. Of course, with Facebook and WordPress and other social media sites, there are rules, but obviously this is almost impossible to monitor unless someone is being obscenely abusive.

The thing that most bothers me about this trend is the anonymity with which nasty comments, statements, opinions etc. are made. I read a couple of news feeds and often a human interest article will be attacked by certain readers and then readers will attack each other with no respect for the fact that we are all real people. Many of the nasty things written on social media sites would never be said face-to-face because in real-life, real-time situations, there is usually an expected decorum. Not so on the internet. Anybody can pretty much say anything they like to anybody else behind the safety of their computer or phone screen.

But why? Why do so many people expend so much time and energy on being nasty on the internet? I was the recipient of some rather nasty commentary on my friend’s blog the other day. The person commenting was not known to me so I was flummoxed by his passionate diatribe against my rather innocuous comment and he proceeded to crowd my friend’s post with long-winded speeches against me, and against my friend who rose to my defense. I responded a few times then gave up because I realized everything I said just seemed to fuel his irrational fury. I would love to recount the dialogue but respect my blogger friend’s privacy so suffice it to say that my initial comment had nothing to do with politics, race, gender or religion – ie. it was not an attackable comment!

The experience was a learning curve for me, so I am glad for it because it has made me even carefuller of my words than I already was – ha. But the main thing this experience showed me was what cyber-bullying might be like for a young person. One of the things this particular bully did was to make assumptions about me and to label me; when I didn’t immediately reply, he equated my silence with guilt; when I did reply, he launched another sermonesque attack. Even though I was astounded and felt extremely misunderstood, I wasn’t hurt – more bemused I guess.

But if I had been 12 or 15 or even in my 20s, I would have been profoundly hurt and affected. And this, I think, is what is so worrying about social media for our beautiful young people. If you read of cases of cyber-bullying and its effects on so many young people (including suicide), it is easy to brush this off as a passing phase, a bizarre incident, or ‘my kid isn’t on Fbook so s/he’s okay’.

I am not saying that my above experience was a case of cyber-bullying exactly. After all, I am an adult and I can take it. But if I had been a kid, I would have crumbled.

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Nov 29

Tick tock

by jmgoyder

Anthony has a lot of antique clocks – a magnificent grandfather clock, three carriage clocks, two mantle clocks and one cuckoo clock. All of them chime on the hour and some on the half hour.

Well they used to.

Ever since Anthony went into the nursing home, all of the clocks have stopped. Mostly this is because Ants always did the clock winding and he never really taught Ming and me. Also, once Anthony wasn’t at home any longer, there didn’t seem any point any more, and letting all of the clocks stop seemed a natural reaction to his absence. My love of their chiming diminished in equal proportion to my increasing grief (if that makes sense, which it probably doesn’t!)

I finally got my act together a few months ago and invited a clock man over to have a look. He serviced all of the clocks, got them going again and showed us how to wind them without overwinding them and pronounced one of the carriage clocks as too far gone. Well, Ming and I lasted a week, so all of the clocks have once again stopped.

Oh the guilt. And the silence! If you are used to the constant chime of clocks, the silence is like a thrum of nothingness. I miss the noise of the clocks, the complaints of people staying with us who said, ‘how can you stand it?’ I miss all of those hundreds of Sundays when Anthony wound each clock with such joy until he forgot how to.

The other day, when I brought him home for the day, he tried again with his favourite clock.

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It didn’t work.

Tock tick (no, that is not a typo).

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Nov 28

The ‘like’ button

by jmgoyder

When someone posts something that is heartbreaking, pressing the ‘like’ button seems an odd thing to do but I think most of us realize that the ‘like’ button is to show we care, not that we like what they are going through. Recently I have read a few posts and comments where the issue of the ‘like’ button is discussed. For example, “I didn’t press the ‘like’ button because I like what is happening in your life, but I just wanted you to know I care.” Now even though this is probably understood by most bloggers, I have also heard of people objecting to their grief-stricken posts being ‘liked’. So I think this is something WordPress and other blogging platforms could address by adding another button that indicates that the reader feels something more than ‘like’ for a post that is sad, or anxious, or bewildered, or despairing.

But what button to add? It would have to be a single word of course and I have wracked my brains and seen others’ suggestions. ‘Hugs’ seems to be a popular idea but some people wouldn’t like that because it seems a bit intimate. ‘Love’ is another possibility but then it might seem like the reader loves the writer’s anguish. ‘Understand’ might offend the writer of a sad post because it might imply that you know what they are going through when of course you don’t. ‘Hope’ is too insipid perhaps? ‘Encourage’ might sound like you are not taking their predicament seriously enough. ‘Bravo’ might seem abrasive; ‘Prayers’ won’t work for non-religious people; ‘Wishes’ is too ambiguous; ‘Care’ isn’t a strong enough word; ‘Support’ is meaningless when you can’t actually offer any beyond words; and ‘Sorry’ is often inadequate and can sound quite trite.

Would the word ‘Heart’ work?

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Nov 26

Breaking nursing home rules!

by jmgoyder

For the last couple of days, I have brought Anthony home for the day. On Sunday, friends came over to see him/us so that was fantastic but yesterday he opted for a quiet day with just Ming and me. Today, I just went in late (4pmish) and grabbed him to come with me to do a few errands: groceries, returning dvds, pizza for Ming etc.

So, as I was trying to get him to walk to the door and outside to the car, I asked the couple of nurses who were helping us if they liked pizza. Their eyes lit up (as mine do when I hear ‘pizza’) so I said I was going to get pizza for Ming and I would love to bring them some too. Then, a very interesting conversation ensued:

Nurse 1: We’re not allowed to accept gifts.
Me: It’s not a gift – it’s pizza!
Nurse 2: I like pepperoni.
Me: What is the problem? I hate these stupid rules.
Nurse 1: Well, if you give us anything, and we accept it, it could be misinterpreted as bribery.
Me: What?
Nurse 1: No, no (laughing) we know you but the rule is that if we accept any gifts from relatives we might be in trouble because it might seem like the relative is doing it to get better care for their loved one.
Me: OMG but I bring chocolates and pistachios and olives in all the time and share it around. Does everyone think I’m a briberist?
Nurse 2: Of course not! We know you but we just have to be quite careful about this sort of thing, because of the rules.
Nurse 1: I like Hawaiian.
Me: Okay, so when I come back with Ants, I’ll just put the pizzas at the desk anonymously?

Both of the nurses nodded and we all had a chuckle but as Ants and I drove around town doing my errands and then ordering the pizzas, I asked him what he thought about the bribery nonsense and he said, “That’s what it’s like at the school, Jules.” (He always calls the nursing home ‘the school’).

Anyway, I wasn’t taking any of this seriously until we got back to the nursing home. The first thing I did was to place three large pizzas on the nursing desk (nobody was there so my secret was safe). Then I went back to help Ants into his room and chair. I turned his light and television on and then we shared a bit of his own pizza, then I left.

On my way out, I heard one of the kitchen staff quizzing Nurse 2: Where did those pizzas come from?
Nurse 2: I have no idea – they just appeared! But I am really grateful.

As I leapt to the exit door for a quick getaway, Nurse 2 called out, “Have a great evening, Julie.” I just hope that when they eat those pizzas, they also eat the boxes because my fingerprints are on them!

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Nov 20

Bravo to my family

by jmgoyder

I have been refraining from talking too much about about the accident for the sake of my family’s privacy but it was an enormous relief today to welcome home my niece finally out of hospital yesterday. My brothers and sister-in-laws, and their older children (not involved in the accident), and our mother, have all been through hell of course. Ming, Ants and I all saw my niece in her brace, and her best friend (also in accident), and we even had a few laughs.

The previous week, Ming and I ventured down to see my younger brother and sister-in-law’s three children and it was wonderful. The children were so hilariously philosophical and my sister-in-law cooked a better meal than I have ever cooked (according to brat, Ming!)

Of course, physical recovery for all five children will take time but the fact that they are all out of hospital and home again is a wonderful thing and the idea of moving forward now seems possible. For many of us, the psychological and emotional damage will probably take longer. Children have a much better resilience than adults – thank goodness!

As the children don’t read this blog, I just want to say here how much I admire my brothers’ families – each, single individual has contributed to the love we share and, even though this is getting overly sentimental, I just have to say that I feel blessed to have such a family.Our mother has been a rock and, weirdly, I have felt Dad’s presence throughout this horrible month.

Bravo to my family and bravo to Meggles!

Meg and nibbles

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