jmgoyder

wings and things

Communicating with Anthony

It is sometimes difficult for me to explain to family, friends and staff about how best to communicate with Anthony now that he has become so silent. So it was refreshing yesterday to have one of the carers tell me that she had learned how important it was to explain to Ants that they were taking him to the toilet or shower etc. and sometimes using the hoist.

“If we explain to him first, everything goes smoothly,” she said; “but if we don’t, he resists.” I told her how grateful I was for this understanding, remembering the times, a couple of years ago, when the use of the hoist terrified him – late night phone-calls from the nursing home in which I had to calm him down and reassure him that he wasn’t being captured by pirates and put into a torture chamber.

Thankfully, these kind of hallucinatory panic attacks were fairly short-lived and now that Ants is less ambulant, the hoist is used often to transfer him from one place to another. As far as I know, this no longer causes fear for him.

Verbally, Anthony is very slow to respond (both cognitively and vocally) so you need to sit close enough to touch him, or give him a ‘nosy’ (nose kiss), or yell nonsense, all of which Ming and I did this afternoon. And Anthony smiled many times, especially at Ming’s antics and asking, at one point, who the ‘bloke’ was.

Me: I am NOT  a bloke, Ants!

Anthony: Oh.

Me: It’s me – your wife!

Anthony: Yes, it is.

Okay so we are now into the fifth year of Anthony’s life in the nursing home and I am continually gobsmacked at how he continues to survive advanced prostate cancer, liver disease and PDD (Parkinson’s disease dementia). He is definitely way past his ‘used-by’ date but, as he isn’t in physical pain, I don’t worry as much; not only that – he is always positive, always accepting, always answering the ‘how-are-you?’ question with a whispered ‘fighting fit.’

 

 

 

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Gentle

The other day I felt the whiplash warning of a storm,

but it passed!

I had my armour on, I had my family protected; I was ready for the storm,

but it dissipated!

I sharpened my sentences with full-stops so that they wouldn’t ricochet back as semi-colons,

but nothing I wrote/said had the slightest effect on the storm-brewer.

I’ve become like a cartoon character of the lioness/mother bear who protects her family.

Overly sentimental posts about Anthony are simply an expression of ongoing grief, disbelief that he has lived so many years post prognoses. Ming has been absolutely amazing in every way.

Ming has a way of unravelling the bitter-and- twisted yarn into a coherent thought and, today, I thank him so much for reminding me to be gentle.

Gentle

 

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Bright eyes!

I feel compelled to record these updates on Anthony’s health, so that I will remember in the future. The unpredictability of his daily condition is just that – unpredictable. After days of silence and sleepiness, today his eyes were wide open (one of the many symptoms of PD is not blinking, so this makes his eyes very wide!)

Me: You look like an owl!
Anthony: I …
Me: Clear your throat – c’mon, cough!
Anthony: Coughing.
Me: So what did you want to say?
Anthony: Where is your mother?

Okay, so a little background information for those who don’t know. My mother is 81 and fighting fit despite numerous health challenges (cancer, broken hip, pelvis, wrist). She lives independently in a town not far from here and she is the epitome of maternal/grand-maternal etc.

The fact that she visits Ants so often – around twice each week and more if I need a break – is testament to her amazing love for me, her only daughter.

Today, she and I joked with Ants, and his eyes lit up several times, with mirth and affection and, of course, confusion.

Thanks, Mama!

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Auto/biographical risks

I was very fortunate to have once been a student of Elizabeth Jolley. She wrote fiction that was heavily laced with fact; she changed names to protect the guilty; she took risks.

The primary reason that I have hesitated over the years (decades actually!) to write what I think is a rather spectacular love story, is due to the yucky bits of the story – the betrayals, conflicts, mysteries and agonies in and amongst its success.

By writing increments of this “Once upon a time” story, I face the challenge of writing about how Anthony and I dealt with the disapproval of our relationship from both sides – from both families – and from well-meaning friends.

Over the last few weeks I have blogged outside the “Once upon a time” story, with tidbits of information about a recent event that traumatised me, and reminded me of some of the yucky stuff from the past. These posts, some now deleted, or edited, are, privately, an avenue into the complicated past of my relationship with Anthony.

When I say rather dramatic things like ‘spectacular love story’ I only mean that it was against all odds – a 41-year-old and an 18-year-old (the beginning), and now (the ending?), a nearly 57-year-old girl/woman sitting in a nursing home with her hands hugged by his nearly 80-year-old fingers.

My recent truthful tidbits have earned me the angst of one family member and, conversely, the support of many others.

I remember, years ago, Elizabeth Jolly speaking to me about one of my short stories:

EJ: This is far too painful, dear. Rewrite it.

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Vacuuming

On the eve of Ming’s 22nd birthday I asked him to vacuum the house.

I had already given him a pre-birthday present of some money, but told him that he would only get the rest if he vacuumed the house.

He grinned, pointed out that the vacuum cleaner needed a new bag, asked me if I remembered how to change the bag, then tested my memory of how to change the bag. I have no idea why I have a reluctance to change the bag; Ants always did that, then Ming. But, in my defence, I am the one who does most of the vacuuming.

Well, having passed the ‘change-the-vacuum-bag’ examination, Ming dismissed me to my newly air-conditioned writing room/office, still grinning (him, not me) and I waited with bated breath for the sound of the vacuum.

I didn’t expect the sound to be so loud. Anthony was always a quiet, careful, gentle vacuumer; he didn’t want to upset the skirting boards. Ming, on the other hand, is a rather violent vacuumer. The BANG AND CRASH sounds were a little alarming so I decided to stay put in the hope that he would forget about this room where I was hiding under my desk.

Finally the sounds of mad vacuuming ceased. The silence was so abrupt that I wondered if the vacuum cleaner was all right. After a little bit more silence I realised that I should have been wondering about Ming.

I emerged from underneath my desk just as Ming entered my writing room. A great big grinning presence.

Ming: Well, I’ve cleaned your house!
Me: OMG that is exactly what Ants said after vacuuming! Every time he did anything domestic, he would make it known that he had done if for me, and I would argue that it was also his house.

I can’t wait to tell this story to Ants tomorrow. I know he will remember his obsession with vacuuming and Electrolux. And I know he will smile at Ming’s vacuuming efforts.

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Anthony

In the last few moments of the year just gone, I broke my holstered, hesitant silence about your illnesses
and blog-blurted little retrospective bits of the puzzle
that has become you.

I wish that I had spoken up earlier
I wish that I had defended you better
I wish that I hadn’t succumbed to your gag order, your insistence on peace at all costs.

Now that you are so incapacitated, I want to be the LOUD of your frail voice; I want to be the SHRIEK of your silent tears; I want to be the STORY of all of your histories.

You won’t approve, of course. You won’t want anybody to know that your heart was so broken that it took the arrival of Ming to heal you. That amazing moment when you became a father and I became a mother ….

Happy new year Ants.

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Last Christmas

Last Christmas was the first Christmas that Ming and I didn’t bring Anthony home and, instead, exchanged gifts and food in the nursing home, where my mother joined us after church. She reminded me the other day that I had promised crayfish cocktail last year but failed to deliver; I think I was probably disheartened and just brought cheese and crackers. I don’t remember a lot about last Christmas except that Anthony was nonplussed by gifts given to him by Ming and me, and generally confused about how to open them; I do remember Ming being hurt and annoyed, and my own hot tears much later at home. It was horrible.

I am determined not to let this kind of scenario play out again this Christmas; if we can’t bring Ants home for Christmas, we will bring it to him, and this time I will do it properly. I will buy six crayfish a couple of days before Christmas and clean/de-shell them on Christmas Eve. Then I will make Anthony’s mother’s cocktail sauce (a secret-ish recipe!).

The real buzz for me is that Ming has agreed to allow me to do the pillow-case/sack thing for the last time. This means I can fill his special Christmas pillow-case with gifts just like Ants and I used to do when he was a bit younger (like a couple of years ago ha!) So Ming and I will wake up on Christmas morning and he will get some surprises and, hopefully, so will I. Then we will meet my mother at the nursing home for crayfish lunch after which Meg and Ming will probably go their separate ways and I will stay with Ants.

Anthony’s prostate cancer + Parkinson’s disease prognoses (both of which were determined several years ago), indicated that he would be probably be dead by now. So my wonderful husband – who never complains, who is never depressed, who never forgets me, who mentions Ming every hour I am with him – has exceeded his ‘use-by’ date.

Maybe this will be our last Christmas with Anthony; maybe not. In the meantime I’ve decided to take a bit of a break from blogging until after Christmas. I am messaging blog friends individually but this will take some time. If anything profound occurs to me I will put it on FB ha.

One of the most exciting things about Christmas is the Christmas Eve dinner at Meg’s (my mother’s) and this year we amount to around 20! My mother does the whole turkey roast thing and I usually bring the ham. Ashtyn Paterson (my niece) does the organisation of Secret Santa stuff. She is a legend!

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From L to R: me, Meg, and my nieces, Ash and Sage.

Sometimes I feel like I shouldn’t be happy whilst Anthony is in this predicament; then I come to my senses and yesterday I even lingered at my brother’s place instead of rushing back to the nursing home. And the other week, I lingered in Perth to see my youngest brother, his wife and Special K and, despite the dramatic circumstances, I looked at this family and wanted them to adopt me.

In February next year, Anthony will turn 80. He is not in good health but he is in quietly good spirits. Will this be our last Christmas together?

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Special K

‘Special K’ is the nickname I have chosen to give my 13-year-old, 6’2″ nephew, not just for the sake of his privacy, but also because he is especially special.

This is a difficult post to write but here goes: Special K was one of the five children injured in a car accident in which Ming was the driver … a bit over two years ago.

Special K was the only one thrown out of Ming’s ute, his leg was broken badly, and he was subsequently emergency-helicoptered to Perth with his father (my youngest brother). And yet this brave and beautiful boy, instead of screaming, helped everyone to calm down. I don’t know how he did this because I wasn’t there; I was at the other end of a suddenly-silent telephone call in which Ming said, “Mum, I’ve had an accident.”

Fast forward to now and all of the children have recovered physically except for Special K who needs an operation to remove the plate from his leg. He might even need another smaller plate inserted; I don’t know.

Ming and I were talking about life and death yesterday and he admitted that he thinks about the accident every single day.

Me: But you were so philosophical at the time, Ming! You kept reminding me that nobody died!

Ming: You were a mess, Mum.

I think the fact that Special K has to have an operation on his injured leg has thrown me back to that dreadful night and reminded me of how resilience works. IMG_0240

As you can see from the photo, Special K is almost as gorgeous as our brand new 007!

[This post is for you, Jo – mother of all mothers!]

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Turning corners

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

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Yes, that is Ming on the left in the above photo. I was feeling a bit blah yesterday morning but, when I switched on my newly-switched-on computer, and the internet rushed into my laptop, this photo was the first I saw.

Okay so it took me a few seconds to realise that it was Ming! Other photos followed and I was so overtaken by laughter that the whole blah thing disappeared. I got showered and dressed and drove into town for lunch with this beautiful nurse.

Once I figure out how to save the photos I took of Ming in his nurse’s outfit, as he and I lunched together during his break, I will post them. It was the most glorious hour of halloween hilarity.

And then I went to the nursing home to see Anthony. I arrived at 1pm and left at about 4.30pm. For these hours I was unable to wake him up no matter how much I shook his shoulders, squeezed his hands, shouted (as quietly as I could) ‘Wake up, Ants!’ His nephew visited, a friend visited, the nurse-in-charge came in and checked his blood pressure etc. and reassured me that all was well. I visited the dementia wing a couple of times, showed several staff and residents the photos of Ming, laughed and joked, in the hope that when I returned to Anthony’s room he would be awake. He wasn’t.

The possibility that Anthony might die during – or soon after – one of these TIAs (which seem to be occurring more often), is a corner I have been hesitant to turn into. I was calm yesterday afternoon, then terrified, then resigned. When I got home, Ming was here, and listened to my tearful fears in the same way I listen to his; after all, we both love Anthony.

It is entirely possible that Anthony will live for many more years; it is equally possible that he will die soon. I am not ready for the latter, despite many attempts to BE ready, and I cannot imagine my life without Anthony in it. His room in the nursing home, the staff who have become such wonderful friends, my arm around his shoulder, our long afternoons watching television, bantering, just being together, sometimes reminiscing, sometimes eating and drinking, laughing, looking at photos, doing paperwork, engaging with staff, residents, friends, relatives, visitors … his room has become my refuge, my home.

Ah, but I do have another home – a place where I can eat, drink, write, relax. I can be one of those trendy people who drink short blacks whilst writing articles about the meaning of life and death OR the proud mother of the waiter at Corners on King.

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

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This, that….

20150927_143929This,
that….

Well I got back from Perth last week and the first thing I did was to rush to my new beaut vegetable garden and also check the chooks. I fed and watered both with a sense of quiet glee.

The second thing I did was to go inside and log on. When nothing happened I didn’t panic since all the green lights were indicating merrily that the internet wasn’t too far away.

Six hours later, having spoken to six different technical support people, all of whom were amazingly patient, kind and positive (with the exception of one woman whose sighs, when I didn’t understand her click34xcableetc instructions, became thunderous on loudspeaker) were confident.

At one point, during this ungleeful, longwinded experience, I rang Ming who said that when he got home he’d sort it out in a jiffy. Well he tried, and even spoke to other technical support people, to no avail.

The Ming then said, with great compassion and a generous hug, “Maybe you’re just not intelligent enough, Mum….?”

I let his observation linger for the ten days during which I had no internet except via my phone. When I began to get the 5s mixed us with the Ss, I gave up.

Anyway, yesterday the replacement modem arrived at the post office and Ming picked it up, brought it home, connected it and voila!

So what am I supposed to do now? I can’t possibly answer all of the zillions of emails and comments and facebooky stuff; I can’t possibly catch up on ten days of my blog friends’ blogs; I can’t even catch up with what I was going to do before I lost the internet because my blog kind of reminded me of what to do.

I survived my ten day blip of no internet, but the person most affected by my off-the-internet-radar status was my beautiful mother. Meg and I have a strong internet relationship via email and Facebook, but she is more attentive to messages than I am, so, when I lost the internet, she was the first to miss me.

And today is her birthday. She is 81, looks 61 and acts like 21. So today Meg came to the farm to see the vegetable garden then we went to a local winery for lunch. The secret surprise was that Ming and A. would join us and that was a fantastic thing!

It’s great to be blogging again. That internet blip taught me something really profound: I need the internet!

One of the hardest things for me now is having fun – the guilt of it. Lunches with friends, learning how to garden with new friends, figuring out the future, altering and/or discarding things in this old house, renewing ….

This,
that,
and the other….

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