jmgoyder

wings and things

Mischief

Anthony: I’m in constant pain.

Me: What? Since when? Where is the pain? Oh my God, I’m so sorry, Ants – you never told me this before!

Anthony: Oh, these things (stretching his arms out), and these other instruments (stretching his legs out in a rather swaggery way).

Me: What kind of pain is it?

Anthony: Agony.

Me: Well why the hell didn’t you tell me this before? I’ll ring the doctor! For God’s sake, Ants, I’ve been telling everyone for ages now that the best thing about your situation is that you are not in physical pain, and now you tell me this!

Anthony: Um… (beginning to do his half-smile)….

Me: So you are kidding? Joking?

Anthony: Just stirring you up, Jules

Me: You want pain? I’ll give you pain! (We have an arm wrestle on the side of his armchair and I win.)

He is so tired that his eyes weep; my laughter is raucous and I apologize but he says he loves my cackle; I leave to come home and he says, unsadly, see you tomorrow.

If Anthony were in physical pain, we would not be able to cope the way we are coping now.

And if Anthony didn’t have his mischievous sense of humor, everything would be horrible. Okay, so everything isn’t wonderful but it is definitely not horrible with Ants in the picture.

(I have learned how to make chili hot chocolate, which Anthony loves, so I might put an extra chili into the mix tomorrow – ha!)

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Our white-haired boy’s new role

As many of you know, Ming had his second spinal surgery just before Christmas last year at which time he was advised by the surgeon not to resume his job as a dairy hand for our neighbours, or to do any manual job, ever. That was a hard pill to swallow but he swallowed it and, since recovering from the surgery, he has spent the last few months throwing himself into acting auditions (most of which have required him to travel the 200 kms to Perth by train or bus, and vice versa).

He scored many bit-parts: a music video, a ‘student’ in a university advertisement, a couple of paid roles; he has also created a portfolio and is now listed on a website for aspiring actors. In fact, Ming has done so much acting-related stuff in the last few months that I have had trouble keeping up. With no vehicle, and no driving licence, he learned how to use public transport, stay in youth hostels, but he also relied on friends and family for accommodation and transport. It has all been enormous fun and a huge learning curve in so many ways and Ming has become a better net-worker than I have ever been and Anthony’s gregariousness shines out of him.

None of this, however, has proved to be lucrative yet, so Ming started to apply for jobs at restaurants and yesterday he was told that the restaurant, where he has only done a few casual shifts, want him full-time now. I am so elated for him and proud! But he and I are also grateful for the fact that a relative of a friend of one of the owners of this restaurant put in a good word for him. (I haven’t included names here, in order protect the innocent, just in case Ming drops a tray or something haha!)

Today, Ming was working there, so a friend and I went for lunch and it was so weird to watch him in action. The place was very busy and apparently, once he goes full-time, he will be jack-of-all-trades. It was great to watch the way he interacted with customers – he is a natural!

Tonight, he’s gone up to Perth (for the last time for awhile, due to getting full-time work) to play the part of a character in his friend’s university film assignment. He auditioned and got the part last week and here is the irony: he was picked as the character of a son who struggles with his father’s dementia, despite nobody in the film crew knowing his background. I am still a bit gobsmacked.

Anyway, of course I am rejoicing at all of this good news for the white-haired boy (despite no longer being a natural blonde); he will no longer go slightly insane in the nursing home and resort to playing on Anthony’s walker!
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So happy and proud of Ming!

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Blogging update

I’m gradually (and unguiltily!) getting back to reading, and commenting on, other people’s blogs, and re-subscribing to those I have lost touch with. Like many other bloggers, I feel such gratitude for the community of friends I’ve connected with over the last three years. The fact that I can’t consistently keep up with everyone’s posts no longer bothers me and it is quite a relief to dip in and read when I can, comment if I want to, and not read any blogs if the day is too busy. Having said that, I am very appreciative of those friends who continue to give me their support and friendship. It has been an extremely difficult year for my family, but things are finally returning to normal, whatever that is.

Perhaps my blog-reading will, from now on, resemble the unpredictability of Ming hanging out the washing!

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The expression on Ming’s face here is exactly the same as when he sees his name in one of my blog posts – ha!

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Beware of the dog: a cautionary tale

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How stupid was that!

The dog was here, again, its initial growl sounding like a lullaby until, once I had written my words down, it began to bark madly as if I had done/said something wrong. So I edited what I had written until the dog swallowed my extra words, until it attacked my thumping heart and painted it red with slices of stillness, until it put its big paw against my throat and whined until I woke up.

Jet black, this dog blends into the evening sky invisibly, sleeps in the pocket of the dark blankets around my feet at night, wakes me up every morning with the audacity of its sudden absence – not my best friend, not my worst enemy, but my closest companion.

Of course I hate the presence of this black dog, and its black eyes, and its black waving tail, and the black fur of its snuggly black snout but recently I have noticed the growing yawn of its absence. Hurray!

That dog was blocking out the sun with its big, dark presence, its ridiculous attempt to be a metaphor, its wolfish editorial antics. Beware of the dog.

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How wonderful was that!

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Routine to the rescue!

I have never been that crazy about routine. As a younger person I had a reputation for being a bit erratic, despite being a nurse and then a lecturer (jobs in which I was never late but always nearly late!) When Anthony went into the nursing home (nearly two and a half years ago), there was a lot of grief, confusion and uncertainty, but no routine.

Now we have a routine and my heart has stopped racing around anxiously. It is so simple and easy and I wonder why I didn’t do this before but I guess the new routine coincides with a noticeable deterioration in Anthony’s mobility and mind function.

For a couple of weeks now, I have been going into the nursing home for most of the afternoon. In Anthony’s bedside cupboard I have lots of snack foods and drinks, cup-a-soups, brandy, wine, chocolates and sometimes I bring fresh cheese and olives.

If the heater isn’t turned on I reach up and press the button, after kissing my husband hello. Then I put a blanket from home on Anthony’s legs, adjust the chair, change the TV station to something I want to watch, move my chair right next to his and hold his hand.

Sometimes (lately) Anthony says, “How do you always know where to find me?” Sometimes he can’t get the words out – they stumble and crouch, frustrated, just above his lips. Sometimes he drools into what we call ‘the dribble rag’ because his swallowing reflexes have slowed down. Sometimes he tries to squeeze my hand in his and there is a small smile.

So I am now in the nursing home with Ants from 2-5pm most days and sometimes from noon. Does this make me a caring-wife hero-type? No! I don’t even understand what has happened to me to make me all-of-a-sudden so attentive! I love him, of course but I hated going into the nursing home for awhile/off and on. Now I actually can’t wait for 2pm every single day.

This routine has really helped me cope.

PS. This new routine means I don’t have much time atm to follow, comment on other blogs but you are all on my radar.

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Intermission

I have learned a lot about blogging over the last couple of years since I began doing it, and I have made hundreds of mistakes like oversubscribing and then being overwhelmed by emails, unsubscribing then trying to find people again, trying to read everybody’s thoughts every day, not having time to comment, not having time to answer comments, etc!

One of the things I have discovered about the WordPress blogging world is an abundance of compassion and empathy and very real (albeit internetted) connection. I don’t even remember now what I intended with this blog with all its faux pas, and now obselete pages, and ideas and goals that went nowhere. I was surprised and delighted when people responded to my birdy posts, then extremely moved that those same people would offer such amazing support to me/us as we faced our traumas of life.

Ming’s pre-op. appointment is on Wednesday so the date for his surgery must be soon (we still don’t know). His court case is likely to coincide which is going to be tricky (we still don’t know that date either).

So this is a longwinded way of saying that I probably won’t have time to read, like or comment on the blogs I subscribe to (too many ha!) but I will still keep posting mine if that’s okay. I will try to catch up with your blogs in the new year.

Happy Christmas!

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Meg and Ming

Ming (my son) and Meg (my mother) are very good at charades, or whatever they were playing when this photo was taken. I have no recollection of this occasion, but my mother just sent me the photo which I have never seen before! In the good old days, when Anthony still lived here at home, my ma would often come to visit on Sundays. She and Ming would play games nonstop while Anthony and I watched, bemused, amused and sometimes hysterical with laughter. Meg and Ming + Ming and Meg = Inviolable.

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Meg is Ming’s only grandparent so they have a special relationship, as well as very bad taste in eye-glasses. Thanks for the guffaw, Ma!

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Dementia is not contagious!

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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Who are you and why are you so nasty?

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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Apologizing to a microwave

Now that Ming is living in his renovated shed (which, by the way, is much more spacious than our house!) I am mostly alone. Of course I am out most days, visiting Anthony, or bringing him home, or taking him out, or running errands, or visiting friends but most of the time I’m home alone.

Don’t get me wrong – I actually love being alone and always have. I never feel lonely, have lots of fantastic friends and family that I see regularly and Ming wanders over from his shed frequently (in search of food!) So being alone does not equate at all with being lonely – well not for me anyway.

However, my aloneness was brought into sharp focus this morning when the microwave beeped for the third time (rather impatiently I thought) to tell me that my coffee was ready. I rushed over to it, saying “Sorry, sorry!” Then, as I took my coffee out, I said, “Thanks!”

It was only as I took my first sip that I realized what I’d done, and couldn’t stop laughing.

You will be relieved to know that the microwave didn’t answer me.

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