jmgoyder

wings and things

Sigh of relief

I have mentioned Dina before (my decluttering friend) and, more recently, Dan (my vegetable garden artist). Well, yesterday they both happened to be here at the same time. Dina was here in the house with me, helping me with a huge pile of filing, and Dan was outside, replenishing the crop of vegetables that had been eaten by rabbits.

The other people who were here were the guys (Eric and Aaron) who I’d employed to rabbit-proof the fence around the vegetable garden and they are doing a marvellous job! I think you have to be Australian to realise what a curse to crops rabbits are. Anyway these guys have dug trenches deep enough to put steel mesh underneath the ground to stop the scoundrels from getting in and eating my carrots etc.

The ‘sigh of relief’ title of this post is just to do with knowing that these are people I can call on, professionally and, sometimes, personally.

And Chris, my computer guru, has helped me solve my cursor acrobatics since getting the new modem – sigh. I have, once again, found it impossible (except via phone) to access the internet.

Dina visited Anthony the other day and helped him with his lunch. He asked for me but she explained that she was there instead of me (this is what my mother does. Then he said to her, as if he were in a restaurant,

“This is only the second time I have been here.”

When Dina told me this I had such a sad chuckle because Anthony has now been in the nursing home for nearly four years.

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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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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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I am so cool!

I feel the heat terribly and, as some of my friends may remember, a couple of summers ago, I developed a condition called “pompholyx“.

(Warning: if you click on the above link you might be grossed out by the pictures, just as I was by the condition).

Anyway, since one of the triggers is excessive perspiration, which I vividly remember my dad having and now it’s obviously my turn, I made a big decision. Air conditioning!

I pretty much live in my writing room, which used to be Gar’s bedroom (Anthony’s mother). Anyway, her 1970s air conditioner died last year, so last week I made the call and the aircon. guys and the electrician installed it this morning. It’s not a particularly hot day (only in the mid-20s C), but as I waved my saviours goodbye, I was already dripping, despite wearing a sweatband.

And now? Ahhh, the bliss of being so cool and the comfort of knowing that when the temperature hits 40 degrees (any time soon as summer approaches), I will have a safe haven! Okay so, in the big scheme of things, pompholyx may not seem like such a serious condition but it drove me quite mad for months a couple of years ago.

I was reminding our doctor the other day and he immediately looked at my hands where, during a funny little heatwave last week, the blisters had begun to appear.

Me: You can’t see them now – I scratched them off and it wasn’t that bad.

Doctor: Mmmmm.

Me: But I can feel them coming back – the blisters. So I think I might need botox to stop me sweating? I read about that possibility.

Doctor: No. I’ll order some blood tests; it could be hormonal.

Me: Yes, of course, but I don’t think it’s just menopausalish because I perspire a hell of a lot more than any of my equally menopausal friends!

Doctor: Mmmmm.

Me: And remember how we discussed cranio-facial hyper-hydrosis, or whatever you call it, last year? That’s me! It’s just my face, head and hands – the rest of me sweats normally.

Doctor: Mmmmm.

Okay so the doctor doesn’t do the mmmmmm thing loudly but it’s definitely a component of our conversations, with a chuckle here and there. I much prefer the mmmmm.

Anyway, as the young aircon. guys were leaving, I apologised for the peacock noise (it’s spring, so they are yaaaaawking constantly). One of the guys said ‘They are so cool!’

I agree and here are a couple of shots of Prince minus his back view!
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As this beautiful white peacock does his twirling, fanning, wonderful dance, his feathers muscle their way into the breeze and sing:

I am so cool!

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Dilemma

Last week I received the following email:

Dear Julie,
I am writing with regard to your book titled We’ll be Married in Fremantle. Given increasing warehouse costs, we have had to review the amount of stock that we are holding for a number of titles where sale numbers each year are low. Unfortunately this book is among those selected to be removed from stock. We would, however, like to offer you the opportunity to purchase as many of these copies as you choose at a price which will cover our costs of shipping and handling….
CEO of … Press

Initially I felt humiliated, then I realised that it is now a rather ‘old’ book, having been published in 2001. I also comforted myself by realising that most of the 5,000 books had sold and I could rescue the 300 or so remainders from being pulped at very little cost. I am still deciding what to do.

It’s not that I have any intention of on-selling the books; I certainly don’t want to have 300 or so copies of my own book on my bookcase to remind me that it wasn’t a bestseller; and this dilemma has nothing to do with ego.

During the time of writing my PhD, then re-writing it into a book (several years altogether), I remember being absolutely driven. I wanted passionately to write something that would change attitudes to people suffering from Alzheimer’s disease. And my thesis/argument was so simple: listen, and respond to, the stories, even when they don’t make sense.

So I have a few creative ideas of what to do with those 300 or so copies IF I decide to rescue them from obsolescence.

Prince and Princess don’t have to worry about these kinds of things – oh to be a bird!

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Changing

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

I have changed my mind so many times over the last few years, months, weeks, days, minutes, moments, about how to best care for a husband, 79, in a nursing home, and our son, 21, embarking on adulthood. It’s doubtful whether Ming will want chooks in his future life!

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Not very long ago, whenever people talked about the weather, or gardening – whether it be small-talk or serious-talk – I would tune out. I have never been the least bit interested in anything relating to the actual job/hobby of gardening despite numerous attempts to get interested.

Okay, I got interested many times; but I didn’t remain interested, mostly because I was busy working at the university and bringing up the beautiful brat, Ming (who, by the way, isn’t interested in gardening either.)

Gardening was Anthony’s ‘thing’. His family (mother and younger brother) came here in the late 1950s to run a dairy farm and Anthony began planting things – camellias, palms, silver birches, flame trees, roses, citrus, hedges … and a whole lot of other stuff.

Up until the year before the nursing home, Anthony was still interested in planting, watering, and wandering about, in the garden. But he would get stuck! We only had the walking stick then so he would go out the back to check on a hose and then become paralysed and sometimes it took a whole hour to get him back to the house. Then, one day, when he was in his armchair in front of the fireplace, I told him not to move while I went up to the shop to get some supplies, only to find him face-down in the front yard; he’d fallen again!

Parkinson’s disease (and all of its off-shoots, including dementia) is an ever-changing condition that can make life tricky for those who care for family and friends inflicted. For example, sometimes I can show Anthony photos of home – the new chooks, the better-kept garden, the mowed lawns etc. and he will think he has been home.

But, at other times, Anthony will ask to come home and I will have to distract him. This is not because I don’t want him to come home; it’s because he is mostly immobile now so I actually can’t physically manage him. The guilt is ghastly of course but it is easily blitzed by my almost-daily company, in the nursing home, during the afternoons. And photos of the new chooks!

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This morning this wonderful group of gardening people came over (it’s a group I’ve recently sort of joined) and each person had a good piece of advice for me. Plus everyone brings some produce to exchange – fascinating!

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I am changing into a gardening person!

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

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“I’m gonna love you like I’m gonna lose you….”

There are many lines in this song https://www.youtube.com/watch?v=DC8FsIdVi9Y that echo one of my many recurring dreams about Anthony and me.

When I last posted, I described a dream where Ants had miraculously recovered; now that is definitely a beautiful dream.

A less beautiful, recurring dream is the one about death. In this dream, Anthony is dead and my dream-self is grief-stricken. But then my real-self wakes up from the dream and realises that he is alive after all. Many of the lyrics of the this song really got to me and are as follows:

I found myself dreaming…
Split second and you disappeared…
Wake up in tears with you by my side…
Breath of relief when I realised…
Whenever we’re standing…
No, we’re not promised tomorrow

Ming of course is not at all keen on either listening to, or reading, the lyrics of this song and, now that he has become musically superior to me, he likes to throw me his opinions:

It’s soooo repetitive, Mum!
It’s so cliched – oh, Mum, you can’t possibly like this song!
NO I DON’T WANT TO HEAR ABOUT YOUR ROMANCE!
Yes, let’s have a chat about love … I like this girl who….
NO I DON’T WANT TO HEAR ABOUT YOUR HEARTBREAK!
I’m off to my shed now, Mum. Love you!

I think I might just listen to the song one more time before I go to bed because I don’t care what the Ming says, this has become my song for Anthony.

32 Comments »

Sundown

When the day begins to close its curtains on the sun, people with advanced dementia often become restless. This kind of agitation is called ‘Sundowner syndrome’ and I’ve written about it before.

Anthony is definitely affected by the syndrome and, by around 4pm, he is quietly distressed and confused. I am adapting as well as I can to the difference between 11am and 5pm; i.e. at 11am Ants is lucid and able to express himself verbally, but by 3pm he sometimes thinks that the television show (at the moment Doc Martin) is actually happening in real life, and by 4pm he begins to descend into such a state of confusion that when I say, “Okay I’m off to get some wine”, he just replies, “Don’t be too long, Jules!”

The domestic and care staff at this nursing home are so wonderful and many have become friends; they all know that it is best to say to Anthony that ‘Jules will be back soon’.

Today I bumped into the wife of a beautiful man who, before he died a year ago, was next door to Anthony. She is elderly too and using a walking frame. Let’s call her Trudy.

Trudy: So how is your husband?

Me: Very confused now … well, you know how it is.

Trudy: You wonder what they are really thinking don’t you.

Me: Yes. You must miss him so much.

Trudy: It’s a year now.

And her eyes filled up.

Anthony and I are so lucky to have each other and he is luckier than most because he has a younger wife who is determined to ensure he is cared for. It is a bit of a unique situation because most of the residents’ spouses are either deceased or struggling with their own health challenges.

When I visited a totally lucid 95-year-old woman today, she expressed so much concern about her 70-ish son that I felt a bit awestruck by her courage and compassion.

Jane: He had to have a shoulder operation.

Me: So when will he be back?

Jane: So what’s your name again?

Me: Julie – you know, my husband is two rooms down. How’s your pain?

Jane: It’s not the pain, I just feel so exhausted all the time as if I’ve been run over by something.

Me: Like a truck?

MUTUAL LAUGHTER

I want to keep writing about this ongoing story of dementia; I want to critique the various interventions that are in place; but I also just want to BE with Ants.

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37 Comments »

On-line/off-line dilemmas

With the blog I write here (we can just forget about other blogs I hoped to establish ha!) I really don’t quite know, or even remember, how it all began. Okay so it was my friend, Nathalie, who first suggested a blog so I began to write one and even included photos.

Fast-forward to now and I have learned a lot about the politics, joys and disappointments of blogging. WordPress is a blog-site I would recommend to everyone and I have had the most wonderful fun, made friends, and connected with people and groups who share their photos and stories beautifully.

But I just can’t keep up with reading, commenting, replying and so on; the blogdom for me has become a bit of a problem. I so admire people who CAN keep up and feel really guilty for not replying to comments etc. My gratitude to blog friends is difficult to describe; how people who are unknown to me have become known friends – extraordinary!

Anyway, I’ve decided to go off-line for a week or two just to remind myself what it feels like to be off-line. Oh yeah, and I’m beginning to ‘get’ Tolle’s NOW thing!

23 Comments »

Cold, hot, not sure

I had a leisurely afternoon with Anthony, watching two episodes of Borgen (the Danish political television series), which he enjoys me enjoying. He was cold as usual, so I did what has become a bit of a winter ritual now: rug on knees, foot rub, heat bag on hands, eyebrow grooming (another story!) Oh yes and I put the heater on.

Being cold has become a constant theme in our conversations:

Me: Are you warm enough?
Ants: No!
Me: Do you want a blanket on your knees?
Ants: Good idea. But can you light the fire?
Me: Good idea.

I reach up to turn the air conditioner on and heat gradually fills the room but it’s invisible heat; he wants to see the fire burning – real logs, real sparks, a real fireplace, our living room, his worn armchair. He doesn’t realise that I am missing all of this too. Ming and I haven’t lit a fire in the living room fire-place since Ants moved into the nursing home.

Halfway through a particularly interesting scene in Borgen, Anthony rummages around inside his knee rug and finds a hand which he gives to me as proof that he is freezing. Bloody hell – he IS freezing!

So I take this 2-kilo heat pack, that a lovely friend gave us ages ago, and heat it up in the microwave of the adjacent kitchen and bring it back.

As soon as Anthony sees my irritated face, he begins to smile. I thrust the heat bag into his lap and put his hands underneath it.

Ants: This is too heavy.
Me: Don’t be such a wimp!
Ants: Jules, please.
Me: Argh – okay, here is the heat bag and here are your hands on top of it! Can we get back to the show?
Ants: Could you just put the cold onto the icebox heater?
Me: What?
Ants: There’s a blister on the floor, a cow.
Me: You’re hallucinating, Ants, you know that don’t you?
Ants: Only if you’re here.
Me: I love you.
Ants: (watching the news channel on TV)
Me: I said ‘I love you’ – aren’t you going to say it back?

I am about to leave, but I rush back into his room and frighten the hell out of him by pretending to leap onto his lap the way Ming did when he was little.

Ants: I love you!
Me: Are you warm enough?
Ants: Yes!

I get home and contemplate lighting a fire in the fireplace but, instead, put a jumper on.

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