jmgoyder

wings and things

Apr 2

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:
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Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Apr 1

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….

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…. saying thank you with me!

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

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Mar 31

The ‘old girl’

by jmgoyder

Ming does most of the phone jobs now – mostly because he loves the phone and I hate the phone. Even before our landline became obselete, and my mobile wouldn’t work inside the house, and numerous other phone problems, I didn’t like picking up this thing and not knowing who I would be talking to. I guess you could say I have a bit of a phone phobia.

But Ming loves it and is exactly like Anthony used to be on the phone – loud, charming, ocker, matey and cheeky. I overheard Ming on his mobile today, asking the bank to alter a couple of things so we could pay bills more easily online. Then I heard him say to whoever he was talking to: “Ha, yeah well I’m just trying to sort a few things out for the old girl.”

Come to think of it, I’ve heard him describe me this way a few times now, but only on the phone for some reason. Hell, I am only 55!

Family Friendship

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Mar 30

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

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Mar 29

Cooler weather, finally!

by jmgoyder

As you can see from the pictures below it has been very very dry here but finally today it rained properly. Ahhhh! The best thing about this for me is that my nearly healed pompholyx condition will hopefully not come back. It is definitely much better now that it isn’t so hot.

Pearl and Woodroffe searching futilely for insects in the dry grass:
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Michael Jackson wishing the pond were fuller:
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A forlorn parrot on a dead palm branch:
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Freckle and MJ waiting for rain (or bread!)
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One of our many crows in a dying wattle tree:
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I did a whole lot of reading today (once again) about pompholyx, and was alarmed at various people’s stories. Some people had suffered repeated outbreaks for over 20 years! One man had tried to kill himself. Another had had to quit his job because it entailed the handling of chemicals. One woman was unable to change her baby’s nappies due to the pain. I read story after story after story and it became very clear to me that there is very little known about the disease, there is apparently no cure, despite many remedies, and I have now compiled a list of vitamins and creams and potions that I will buy tomorrow. My dermatology appointment isn’t for another week and a half so in the meantime I have taken bits of advice from all I have read and will endeavor to avoid all of the possible triggers: water, soap, coffee, cleaning products, dairy, wheat, dust, tea, heat, stress, alcohol, wool, and anxiety.

I feel very positive – and cool – and a bit dirty!

Animal Grief Happiness Wings

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Mar 28

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!

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Animal blogging Family Friendship Grief Happiness LOVE STORY

79 Comments »
Mar 27

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

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Mar 26

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!

Anthony and Pat2

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

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Mar 24

Wedding anniversary

by jmgoyder

Oh no! Have I/we forgotten it again? Is is now 21 years? No, it must be 22 years because Ming is nearly 21!

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Blog break until April 1st. In meantime will read your posts silently.

blogging Family Grief Happiness LOVE STORY

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Mar 23

Unblissed

by jmgoyder

I have now tried every ointment, drug, vitamin, doctor, prayer etc. to no avail, so this week I will see a dermatologist for the first time. In a state of unblissedness today (when I woke up to see my hands still peeling and feeling sore), I solicited the help of my mother and Ming to visit Anthony so that I could do some serious research into what has become a chronic condition for me – pompholyx.

There is nothing like an unexpected disease to increase one’s vocabulary, research abilities, and empathy. One thing for sure is that I am a hell of a lot more knowledgeable tonight than I was this morning – and actually very reassured that it is not just me.

You see, the desquamation (peeling) of my hands is apparently the last phase of the pompholyx cycle, and the liquenification (bloody scabs caused by victim scratching), is also part of the last phase. Which means I am in the last phase for the third time.

How on earth do people with chronic illnesses, chronic pain, and chronic grief, continue on into every newly painful day?

Family Friendship Uncategorized

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