writing | jmgoyder

“I heard it on the news.”

by jmgoyder

I was a little taken aback today, when I went up to our little local shop to get bread, and the proprietor said how glad she was about Ming. Seeing my confusion, she said, “I heard it on the news.” I told her about the reduced charges and she said she already knew which was quite disconcerting because we didn’t hear or see anything on the news. Then she said she was annoyed that they didn’t pronounce his name correctly and I laughed because how does anyone who isn’t Scottish get ‘Ming’ out of ‘Menzies’?

Ming and I are glad we didn’t see or hear his verdict on the news although I am now wondering who did. Oh well, I’m sure small town chitchat will only give it 24 hours and will mostly be positive and there is no point wondering. I suddenly realized I have been hiding away a bit by not frequenting the local shop, butcher, post office and petrol station as much as usual. It became a little nerve-wracking after the accident because I was never sure if people would ask me questions or avoid the subject (strangely similar to how people are not sure whether or not to ask about Anthony).

Stigma, embarrassment, acceptance, humility, guilt, miscommunication, shame, empathy, bewilderment, grief and joy; all of these factors and emotions and more have bundled themselves together, over so many months now, that it is difficult to know how to untangle what has become a maze that I have found the exit to. And yet, on opening the exit door, nothing looks particularly different; the grass is still brown from a long, hot summer, the mice and rabbits continue to plague us, the car needs washing, and I am very behind with the house-hold jobs.

I never experienced any sort of anticlimax as each of the children recovered from their injuries; it was just pure joy. And yet now that the court case against Ming is over, the joy of Monday has been replaced with a sense of nothingness which is, I guess, the space of anticlimax that precedes exiting the maze.

Tomorrow, I will exit the maze, having spent one final day within its mystery. I didn’t want to stay there but I had to figure a few things out like how to cope with people’s concern or lack of, how to move on with the newfound grace, faith and compassion I am already experiencing and how to be more grateful for every single moment of every single day, and every single person – especially my brothers’ families and my mother.

Tomorrow, if someone else says, “I heard it on the news,” I will allow my soul to smile as I leave the maze.

Happy Easter.

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

27 Comments »

Easter Saturday, Parkinson’s disease and a picnic

by jmgoyder

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

51 Comments »

Effervescence!

by jmgoyder

Ashtyn is my eldest niece and she has the gift of effervescence in spades. Recently, she, and her Scottish beau, were married in Edinburgh but have now returned to Australia to settle in Perth.

There is something so sparkling about Ashtyn that, no matter what anyone else is going through, she lightens it up with her smile, her positivity and her wisdom. As her aunt, I respect her and applaud her for all of her accomplishments and for her ability to love each individual in her ever-expanding family, not just with sentiment but with a roll-icky humour. She actually reminds me sometimes of my own father, “Dad” who died before ever seeing her. Dad was mostly pretty serious, but when he broke out into humour it was amazing.

Ashtyn’s humour is contagious; she has a way of making you feel good even when you are feeling bad and I now realise that she is the epitomy of effervescence.

Happy birthday, Ashtyn!

Family Friendship Happiness LOVE STORY

33 Comments »

Dancing

by jmgoyder

The following poem was written by my mother, Meg, before any of us knew the outcome of Ming’s court hearing on Monday. I thought she’d written it for Ming and that he was the gymnast, then I thought it might be for me because my hope was faltering; then I thought it might be for Anthony whose mobility is deteriorating; then I thought it might be for the various family members who have been affected by the car accident; then I thought it might be for all of us – everyone….

I now think Meg’s poem was all of those things, but it was mainly for our big, loud, dancing Ming!

Focus. Meg. April 14, 2014

A gymnast
On the balance board
Looks steadfastly
Towards that spot
Far in the distance
And his body
Perfectly in tune
Glides smoothly forward
Step by step
Unfaltering.

The tiniest distraction
Left or right
Behind ahead
Above beneath
He falls

Resolves next time he mounts the board
To fix his eyes
On One who beckons.

The board seems now so wide and safe
His toes spread out
His balance now regained
Secure.
A joyful happy jig.
The tightrope turned into a dance floor
Music
Laughter
Joy.

Thank you, Mother.

PS. I think I need to get a new photo of Ming dancing because I am quite sure I have posted this one before; I also need to throw those obscene green shorts (that I bought Anthony for a joke over 20 years ago) in the trash. Why Ming insists on wearing them constantly is beyond my comprehension!

blogging Family Friendship Grief Happiness Wings

57 Comments »

A Sunday drive

by jmgoyder

Going for a drive with Anthony, which I now do quite often, has proved to be a great success. If I am doing errands in town, I take him with me and he sits in the car while I do banking, post office, grocery and other jobs. He loves sitting in the car and watching passersby and it is a way of being together that doesn’t entail the heavy lifting of him in and out of the car except for when I collect him from the nursing home and take him back.

By lifting, I don’t mean lifting the whole of him but, in order to get him out of the car, I have to help him twist around, then grab my hands, then we do a 1-2-3 attempt to get him standing up. Then he can usually walk with the walker but sometimes not so I have to get the wheelchair. (I have now bought one that can be folded one way or the other). Getting him into the car is easier; I just use my bum to push his bum into the seat, then I lift his legs in if he can’t, then I get into the driver’s side and sort of shove him over because he has become very crooked and leans over to one side. Then I put his seatbelt on and we’re off!

I have decided to do this more frequently, rather than bringing Anthony home or taking him out to eat, or visit people, because it is so much easier on my back than the constant transfers necessary in those sorts of outings. On Sunday we went for a long drive down to the small, picturesque town where he was brought up, Balingup, and I learned a bit of a hard lesson in that I suggested we go to the pub there for a drink and some fish and chips. Ants was more mobile than usual so he managed the walker, very slowly, in and out of the pub, but once seated, he kept nearly falling off the chair because he leans so badly to the right. I had to sit on that side of him and keep pushing him upright (not particularly gently I might add!)

Here is our conversation while we ate fish and chips:

Me: Sit up for God’s sake!
Ants: You’re so rough, Jules.
Me: Wipe your moosh – you have fish all over it!
Ants: Give me the dribble rag.
Me: You had it – argh, it’s on the floor!
Ants: I have to go to the loo.
Me: What? Oh no!

After a very strenuous and slow trip to the loo with me, we got back to our table to find the fish and chips cold of course, but the beer was good. By then, however, I just wanted to get Ants back to the nursing home because I could see he was faltering (like clockwork 3pm), but he didn’t want to go.

Ants: But I’m having a good time.
Me: Too bad – I have to get you back before dinner.

It took around 20 minutes to get Ants out of the pub and into the car and we were off again! But then another problem – our thermostatic incompatibility – occurred.

Ants: Jules, I’m freezing. Put the heater on.
Me: What? It’s boiling in this car already!
Ants: Is there a blanket?
Me: Okay I’ll bring one next time, wrap you in it and put you in the boot (trunk).
Ants: You’re so sexy when you get mad.
Me: Get your hand off my knee – I’m driving!

So for the hour it took to get back I had the heater on Ants and my window open so I didn’t suffocate or sweat (I am avoiding perspiration at all costs due to the stupid pompholyx).

Long story short: I got Ants back into his room at the nursing home and comfortable in his chair, put the ABC channel on his TV and then told him I was going home and would see him the next day.

Ants: Where are we staying in Balingup?
Me: No, I’m going home to Bythorne.
Ants: So where am I?
Me: Wattle Hill – the nursing home.
Ants: Who is going to look after me?
Me: The nurses.
Ants: But they always kidnap me.
Me: No that’s just your Parkinson’s confusion – nobody is kidnapping you, Ants!
Ants: Are you sure?
Me: Yes, you’re safe and in good hands and I’ll see you tomorrow.
Ants: Give me a hug.
Me: Okay, and I love you so much babycheeks!

I got home around half an hour later and Ming asked why I was so exhausted and, when I told him about the day, he suggested that, from now on, I just do the drive thing and not get Ants in and out of the car so much.

Ming: I don’t get you, Mum. Why do you keep bothering?
Me: Because he’s my husband and I love him.
Ming: But this is not good for your happiness – you deserve it way more than Dad!
Me: Why?
Ming: Because he’s old and you’re still young!
Me: So does that mean you deserve to be happy more than I do because you’re very young?
Ming: Of course!

Okay – a few lessons learned here (I think!) One thing for sure is that our car is going to accumulate a fair bit of mileage in the coming months!

Happier days:

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

58 Comments »

Blog blessings

by jmgoyder

I began blogging in November 2011, with no clear intention other than to write something every day, which I have for the most part. The subject matter meandered from birds to Anthony’s Parkinson’s disease, to Ming’s teenage-hood and scoliosis, to our personal struggles. I dabbled in novel and romance writing, briefly promoted my book about Alzheimer’s disease, attempted some poetry, began to write about Anthony’s and my love story, posted pictures, and generally wrote a whole lot of this-and-that.

In view of the miscellaneousness of my posts, I suppose “Wings and Things” isn’t a bad sort of blog title so I’m sticking with that because it allows me to meander in the usual way. This is obviously not good for the stats as themed blogs get more ‘hits’ but, despite wanting to make more people aware dementia sufferers should be treated with more respect, I don’t care any more about the stats.

One of the things that has astounded me about my blog journey so far has been the incredible friendships wrought (with people I may never meet in person), and the mutual support system enabled via WordPress. The blogs I subscribe to are an eclectic mix of bird, photography, illness, writing, grief, dementia and philosophical blogs (to name a few) and it is often very difficult to keep up. The good thing is that most bloggers understand this difficulty and don’t mind if you don’t read their every word/post – phew!

I would never go to a support group, I already have enough friends in my non-blog life, and I am not naturally gregarious, so I am rather astounded at how much I have come to depend on the bloggers with whom I have become close – an extraordinary community made up of some of the kindest people I have ever come across. I also enjoy offering my own friendship and support to these fellow bloggers and this has become a meaningful part of my life.

This blog has also connected me better to my already-there friends and family, sometimes disconcertingly. For example, I said to my friend the other day, “Guess what happened yesterday?” and she said, “I already know, Jules – I read your blog.”

Oh!

So, in the spirit of miscellaneous gratitude, here is Diamond, our shyest goose….

…. saying thank you with me!

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

53 Comments »

A very quiet house

by jmgoyder

As many of you already know, Ming lives in an old shed we began to renovate for him years ago (before Anthony went into the nursing home). It has been a very long process but also very exciting. Once it was finally finished, with a new paint job, lino on the floor, windows put in, electricity connected and his bed moved out there (around six months ago) he began to sleep out there regularly. But it wasn’t until recently that he moved all of his stuff out of his old bedroom (in the house) to the shed. Then, two days ago, he moved our old refrigerator in there too so he now has that and a microwave, so he can be (sort of) self-sufficient when it comes to meals.

Ah, meals, yes – a contentious issue for Ming and me. You see he has always been extremely fussy with food. No, let me rephrase that; he has always been extremely FUSSY with food! Let me exemplify. As a newborn, he wouldn’t breastfeed or take a bottle without our coercion (Anthony’s confidence that he’d had this problem with calves, and he could fix it, was unfounded and Ming actually lost some of his scrawny birth weight in his first month of life). He simply wasn’t interested in any sort of sustenance full stop. That first summer of his life I had to actually syringe water/milk/custard/mashed banana into his sweet, rebellious little pursed lips. It was an absolute nightmare.

Long story short, he survived on the bare minimum for years. During toddler years it was crackers and orange juice and sometimes butter, but nothing else. Eventually I took him to a naturopath who did some magic and he got a bit of an appetite but he is still (at 20) one of the most unhungry people I have ever come across. He just doesn’t seem to have a normal appetite reflex thingy – a weird anorexia? Mostly, he doesn’t think to eat, meals are haphazard and then suddenly he will eat four steaks in five minutes.

Needless to say, Anthony and I gave up when he was a kid and just let him ‘graze’. And now that he isn’t a kid any more, he either rejects meals I prepare or says he isn’t hungry. So, a few weeks ago, Ming and I made a decision that has actually saved my sanity (and probably his). When it comes to food, he fends for himself. He buys and prepares his own food and I am not to interfere.

Well, since I don’t eat that much anyway, this has come as a bit of a relief. But it is so hard to let go of 20 years of trying to feed the brat and let him fend for himself.

But it’s so weird and so quiet now and it only hit me tonight. With Anthony now in the nursing home, and Ming in his shed, there is no need any more for me to buy, prepare or cook food for others, so there is no sound of something simmering on the stove or in the crockpot and, because there is nobody in the kitchen any more, the television is off, it is very quiet.

All those years ago, when I first met Anthony and his mother and family, this was the noisiest house I had ever entered – loud voices, radio blaring, eggs and bacon sizzling, kettle boiling, Aga thrumming, dairyhands eating, and big, boisterous Anthony yelling for more toast-and-marmalade please.

So now, with all of that fading into history, and Ants in the nursing home, and Ming in his shed, and food no longer being something any of us share any more, the house is deathly quiet and strange and a little bit unfamiliar.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

46 Comments »

Stress question

by jmgoyder

Why is it that some people cope better than others with stress? This has always mystified me. How?

For example: two people can experience the exact same grief, joy, shock etc. and one will take the experience in his/her stride, and the other one will be emotionally overwhelmed. The former person is the one who organizes the funeral, party, and/or contingency plan. The latter person, bathed in grief, joy, shock, may not be able to get out of bed in the morning.

Lately, I have felt a mixture of these two responses to sudden change and I have to admit that, mostly, I am the latter person. No matter how much I want pragmatism to beat the hell out of misery, it doesn’t always work and, when I took Ants for a drive today and his head bent to the left side (Parkinson’s), and he kept forgetting, then remembering again (due to my prompts haha!) that is was our 21st wedding anniversary.

Perhaps the answer to the stress question is this: Accept what is; make the most of every single hour of every single day; and get back on that bicycle!

It has been a difficult few months so thanks to all friends for encouraging comments to me and my extended family. Ming’s court case (adjourned three times now) is happening mid-April and there is a bit of hope that his dangerous driving charge might be downgraded thanks to the letters from my brothers’ families to the police.

Oh to be a duck!

Animal blogging Family Friendship Grief Happiness LOVE STORY

79 Comments »

Heather

by jmgoyder

When we first moved to Bunbury, Western Australia, after five years in Canada and three years in Papua New Guinea, we were befriended by two extraordinary families. At the time, I was 15 and my brothers were a bit younger. The way in which our friendship grew with these two families is a very long story and definitely worth telling, but that is not for this post.

This post is about Heather.

Tonight I opened a silver envelope within which was a card from one of my mother’s best friends, Heather, a member of one the above families. Inside the card she had written the most beautiful message to me – a message of comfort and love and with a buoyant positivity (which she apologized for because she is rather famous for her positive attitude that she thinks people don’t always like). Well I like it very much!

Heather was my mentor when I was a teenager struggling with the culture shock of transitioning from PNG to a private school in Bunbury and she, her husband, and her children, helped me to adjust. They were all so kind.

So this is just to say, Heather, that I DO like your positivity and I have drawn such strength from your kindness to me in this card. The fact that you can be bothered to make this gesture, even though you and your family have your own challenges, joys and busyness, amazes me. I didn’t realize it until now but I have always drawn strength from your incredible ability to see the best in people and situations AND your inviolable faith.

Heather’s card was sitting beneath a mountain of bills and letters and all that stuff I loathe doing. Its envelope caught the light, so I picked it up out of the stack of old mail and opened it today. And my heart did one of those somersaulty things with gratitude to have someone like this in my life.

I can’t just thank you, Heather; I salute you. Much love
– Julie

blogging Family Friendship Grief Happiness

28 Comments »

To my sister-in-law, Pat

by jmgoyder

Dear Pat

I am finding it very difficult to believe you are gone because Anthony and I were just talking about you the other day, about your pink jacket, the fact that you made the effort to come 200 kilometers south for his 75th birthday even though you and your family had to go back to Perth that same night. You and Anthony sat next to each other all night and I was a teensy bit jealous!

And I remember your 90th – the joy of it, and your family, and your beautiful pink jacket, and how much you loved the photo I gave you of Anthony sitting on his motorbike with baby Ming. In amongst the food, frivolity, speeches and chitchat, you shone bright – always, always with a glint in your eyes, a mixture of wisdom and wit. And once again, you and Anthony sat next to each other.

The weekly phone-calls, before your hearing failed and Anthony had gone into the nursing home, were a highlight for us. Ming would answer the phone and yell “It’s Auntie Pat, you guys!”

I remember being a bit nervous of you when I married your little brother even though, at the time, he was 57 and you were the age he is now. It took you a little while to approve of me but, when you did, you gave me your full older-sister-approval and I learned how to answer you back!

Even though I never had a chance to tell you when you were still alive, I want you to know, Pat, that you taught me how to be assertive, how not to take nonsense, and how to love unconditionally. You also taught me the art of a brandy before salmon mornay – and the way you and John smiled at each other is an image that is imprinted on my mind forever.

I know, if I had tried to say these things to you in years gone by, you would probably have shrugged them off as sentimental because, like Anthony, you were/are pragmatic and that is one of your many legacies.

At your 90th, I was sitting next to Mary, the daughter who lived with you and she said, quietly, with her eyes full of tears, that it was a privilege to look after you. And, that day, seeing how much all of your children and grandchildren loved you, I wished for a moment that I had had more than one child.

One of the things I will miss most is those booming phone conversations you had with Ming, both of you shouting into the receiver so loudly that I could hear the whole thing. Your first question was always “How is Anthony?” and Ming and I would reassure you.

And remember that time you came to Glengarry Hospital, when Anthony was being assessed for a new medication regime? You created a bit of a scene with your “What are you doing with my brother?” The nursing staff loved you immediately!

I will miss you so much, Pat. And the first thing I am going to do, after your funeral, is to buy a pink jacket. My/our deepest sympathy to your beautiful children and grandchildren. You were – you ARE unforgettable.

Lots of love
Julie, Ants and Ming

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Uncategorized Wings

52 Comments »

jmgoyder

wings and things

“I heard it on the news.”

Easter Saturday, Parkinson’s disease and a picnic

Effervescence!

Dancing

A Sunday drive

Blog blessings

A very quiet house

Stress question

Heather

To my sister-in-law, Pat

Blog Stats

Recent Posts

Follow Blog via Email

Archives

Dementia articles