wings and things


I’ve had a wonderful rest from blogging (as in NOT reading, writing, commenting, replying) and, despite the inevitable guilt, it has been great to concentrate on other things.

Like my navel!


That’s Gutsy9 by the way.

Life here has become too busy to sustain blogging every day so I’ve decided to post once a week instead of once a day. Again, I really appreciate the support and friendships formed with other bloggers but I simply can’t keep up.

I think, too, I have oversubscribed to blogs in general and, especially to those that deal with grief. The kinship and support exchanged with those bloggers continues to sustain me but also makes me sad. I can hardly cope with my own sorrow about Anthony, so reading about the grief of others is very hard – too hard for me at the moment. For those of you who I have become close to, we have each others’ emails so we can still keep in touch. Please feel free to email me on

Years ago, when Anthony was younger and still milking his cows, he would have a mini-rest after lunch and that would sustain him for the afternoon ‘shift’. He would have a solid sleep for around ten minutes then get up again, full of energy!

The memories, all mish-mashed now into the present, are sometimes heartbreaking for me, but not for him, thank God. He is okay; my husband is okay; he is being well looked after in the nursing home; he is warm; when he is confused, the nurses reassure him. And tomorrow, I will go in and stay with him for the afternoon and ask him if it is okay if I lie on his bed while we watch TV ….




Ever since I began blogging, in November, 2011 (I had to go back to find this!) I have been amazed by the generosity of strangers, the friendships formed by commonalities, and the understanding when certain bloggers, like myself, just can’t keep up with those amazing, yet tenuous, friendships.

The fact that WordPress has gone a bit AWOL in terms of this blog (yes, I have contacted the Happiness engineer people) has actually given me time to reflect on what I really want to do here, on this blog:

1. Reading: Keep in better touch with blog friends, but don’t feel guilty if you can’t.
2. Writing: KISS (keep-it-simple-stupid!) – also, keep it short.
3. Photography: Learn from others.
4. Personal: If you are having a difficult time with the whole life thing, and you can’t blog, that is absolutely fine.

I so appreciate all of the blog support I have received from friends, relatives, bloggers and family, but I just cannot keep up at the moment and feeling bad not to have even answered comments! So yet another blog break is in order, so I can spend more time with Anthony and write my soon-to-be famous novel ha!

Nothing dramatic – just a little blog holiday.


A bit like the weather

At the nursing home, Anthony was up and about this afternoon at about the same time he was in bed yesterday. He was lucid, mobile, vocal and quite jaunty.

To me, Dementia resembles the unpredictability of the weather, about which you can do nothing. The other day, a tree was uprooted and fell down during a storm; the next day it poured with rain; the next day it was bright sunshine; and today it is a bit of both.

There is nothing anyone can do about weather fluctuations – nothing. Forecasts can be wrong and often the weather will change drastically from what was expected to something totally different. A storm may shove a sunny day aside and vice versa. And there is nothing you can do about it. Nothing.

Dementia is like this in so many ways. One day, at exactly 10am, Anthony might be able to answer the phone and have a coherent conversation with me; the next day he might be unable to do either. Despite the careful timing of his PDD medications (just like I used to do at home), sometimes he has a huge appetite and other times he has forgotten how to eat. Sometimes he can almost run, using his walker and other times he can’t even take a single step and we have to get the wheelchair.

With over ten years of nursing experience up my sleeve, and a PhD about Alzheimer’s Disease, you would think that I’d have more understanding of the kind of nuances that occur when Dementia has climbed onto the back of another disease like Anthony’s Parkinson’s. And yet, every day is a surprise for me – sometime wonderful, sometimes awful, and sometimes in-between … a bit like the weather.

So what do you do when the weather isn’t what you expected?
You accept it of course, because you have no choice.

[Note to blogger friends: I am still not receiving email notifications of your posts so have been using the WP Reader. This is a much better way for me for the time being but I am not keeping up with you all and I apologize].



Today, Ming and I took my mother out for lunch for Mother’s Day and we had a lovely time together, and we all mentioned Anthony but the logistics of getting him into that crowded restaurant were too difficult, so we didn’t include him.

After lunch, Ming and I went to the nursing home. Usually, when we visit, Ants is out in the sunshine, or still at the communal dining table, or sitting in the armchair in his room. But, today, for the first time ever, we found him in bed, with the bed-rail up. Ming and I briefly watched him from the doorway; he was nearly asleep, but not quite, his eyes were vacant and wide, and his tongue was lolling, and he was extremely confused.

I sat right next to Ants and stroked his head, while Ming looked through a couple of boxes of photos of Ants when he was young (which I have kept in Anthony’s nursing home cupboard for ages) and, for the first time ever, Ming was really interested.

But Anthony was terribly blank and his speech was incoherent and, even though I know he might be a lot better tomorrow, I caught a glimpse of the inescapable future when he will be bedridden and unable to communicate.

I am totally gobsmacked by my mother’s capacity to love and visit this son-in-law of hers who is just a bit younger than her. When, as a teenager, I fell in love with a man twice my age, she must have been totally alarmed and who wouldn’t be? He was 41! Long story short, it took many years for it to all work out with Ants and me, mainly because he respected (and was terrified of) my youth. But when we finally got married, my mother embraced him with her whole, beautiful heart, hesitantly to begin with, cautiously and protectively, and now totally.

Anthony is approaching, in a slow and confusing way, the next phase of all the diseases he suffers, mainly Parkinson’s. I visit, or take Ants home, or out, every day when I can but I fluctuate and am not very organised (i.e. yesterday I brought him home for the day then felt like I needed a crane to lift him from chair to wheelchair to car – it was terrible and I wasn’t physically strong enough and, all the way back to the nursing home I sobbed silently, because I had become impatient with him with my “JUST PUT YOUR LEFT FOOT FORWARD, ANTS!”)

Even though I can already see that I have written a rather convolutedly emotional post here, I want to thank my mother so much for helping me care for Anthony now that he is in the nursing home, for visiting so often, and for loving him. Thank you Mother.

But when he is totally bedridden and asks for you and not me we may need to have a bit of a discussion!


Ming was successful in his audition!

For those who don’t know, Ming has been doing ‘extra’ work over the last couple of weeks but last week he had to properly audition for a more serious role and he got the part! It’s only for a trailer for a film/TV series pitch so it is very early days but of course I am already seeing his name in lights haha! He is the main supporting role in what looks like a political drama comedy and he will play the part of a rather arrogant young up-and-coming politician.

As the rehearsals and filming will take part in Perth (2 hours away), he will be staying with friends and family as he has done for the last couple of weeks. I told him to increase the list of possibilities so that people wouldn’t get sick of him, but he just said, “Mum, who could ever get sick of me?” I decided not to answer that question.

So exciting!


Parkinson’s Disease Dementia and FEAR

I don’t think many people recognize, and acknowledge, the kind of fear that a person with any kind of dementia can experience. Anthony has PDD but can still vocalize his fears, especially after the sun goes down (Sundowner’s syndrome).

About 15 minutes ago, I rang him on his new phone and he actually picked up (doesn’t always remember how) and he was frightened and utterly delusional, thinking that he was at his brother’s house and that a storm had destroyed it, and asking me to come and rescue him. His words were garbled and frantic. I tried to calm him down, then told him I would ring the nurse but he said I wouldn’t be able to get hold of a nurse because of all the workmen were around and it was dangerous.

So then I rang the nurse and told her and she said she would go and check on him and get back to me. There is now an anti-anxiety drug that has been prescribed for these occasions so I reminded her of that.

Now I am waiting for her phone-call. As I wait, I think, with great distress, about how, from time to time, Anthony becomes absolutely terrified at night. PDD and, paradoxically, some of the medications used to treat it, can cause hallucinations, paranoia, confusion of space and time, and fear.

Anthony’s bouts of terror usually only last about half an hour which is the same amount of time it would take me to drive into town and ‘rescue’ him.

When is scared like this, he becomes more articulate despite the fact that what he describes isn’t real. Very soon, I think, he will not be able to talk at all, so it is very important for me that I understand his fear, and try to reassure him. I was in this afternoon, seeing him, and there was no indication he might have one of these ‘episodes’ despite the fact that he was very confused.

I am not just spilling my guts here – I am also saying that if your loved one has dementia but has ceased to speak, they might have the FEAR thing too so your voice on a phone, your visit, your touch, a hug, a cake, a blanket or a cup of tea might just alleviate that.

My heart breaks for those suffering this kind of fear in silence. I just spoke to the nurse and Anthony is apparently okay again and he is being put to bed but what if he is still really afraid? I am so worried, but I won’t be able to see Ants until tomorrow morning by which time he may have forgotten the fear. Oh I hope so.

He is, and always will be, my hero.

[ps. not keeping up with other blogs atm – sorry]


Ten years ago!

I just found this email draft in my files. I wrote it to Anthony’s doctor and specialist at the time, but I never sent it because I was too shy to be this upfront and personal and, also, neither of them were emailable back then. It gave me a bit of a shock to read my perspective of what was happening to Anthony in 2004, from my new perspective in 2014, mainly because I had lost track of how long Parkinson’s Disease has been part of our lives:

Feb. 2004

[Notes for Drs re Anthony Goyder’s Parkinson’s]

Hello Mike and Robert,

I want to document Anthony’s “condition” before I get so used to it I think it’s normal, whatever the hell normal is. So I am writing to you without Anthony’s knowledge because, from past experience, I have learned that to say this sort of thing in front of him only makes things worse. So this is confidential between you and me. I would hate for him to know that I am this worried and this pissed off.

He presents fairly well to you guys (bravado and all that), then, when we get home and he is back to ‘normal’, he just slumps again. I am struggling with the dilemma of whether to push him to make more of an effort, or to just let him be – ie. I am not sure anymore whether his lassitude, lethargy, lack-lustreness etc. are symptomatic of the Parkinson’s in a physical sense, or if this is a psychological thing – or if this is a side effect of the sinemet.


He has an increased stoop, so much so that he seems to fill more space than he did before and, from behind, he is so bent over that it looks as if he is headless;
His movements are slower – terribly slow; his ability to grasp, pour, reach for, use cutlery, walk etc. – all of these are drastically reduced.
He is exhausted most of the time. He does chores like emptying rubbish into incinerator and long hours of watering garden (switching hoses etc.) but has to sit down often in between all of this. Sometimes he stands for minutes on end outside, looking at the ground. I don’t know what he is thinking.
He seems badly depressed but I’m not sure about this because we still do have a few laughs and great conversations. The main reason I think he might be depressed to the point of needing medication is that he has no energy or incentive or excitement about anything and will not come to watch Ming (our 10 year old) play basketball etc. In fact, Anthony will not go anywhere anymore except extremely reluctantly.
He often doesn’t shave, even if visitors are coming. He wears raggy clothes and he can’t pull his shirts down or his shorts up and doesn’t seem to care. He lies down a lot. He appears morose a lot – I do realise this lack of facial expression is yet another symptom, but sometimes it seems like real moroseness.
He can’t keep up verbally or cognitively with what is going on when Ming and I are having a conversation and he often misses the point of something that is said. This is not terribly noticeable except to Ming and to me. Anthony kind of goes a bit blank or preoccupied and I sometimes have to “translate” what Ming says to him.
Sometimes I may be doing something really mundane like cutting up vegemite sandwiches and he says something bizarre like, “What’s that? Is it meat?” when I’ve only just told him what I’m doing. I do realise this could be an eyesight thing and he refuses to wear glasses, so maybe I’m overreacting – ha.
He has become extremely self-conscious about his appearance (old, bent over etc. – his words, not mine) and avoids all social events.
He will not/cannot drive anymore, except to take Ming to school and pick him up on the days I am at work. The weird and worrying thing about this for me is that he was always car crazy and loved driving but he doesn’t seem to care that he’s lost this. If this is acceptance, fine, but it seems to me that this is a kind of resignation thing. I am not criticizing him – I am worried.
He is ultra dependent on me – my company, my presence. Whenever I go out (except when I go to work), I feel guilty about leaving him.
The drooling thing has nearly stopped, but is still there occasionally. I have always pretended not to notice, of course.

I confronted Anthony about some of these things during our recent row (not really a row, just me upset and him defeated) and his attitude was a silence of sorts – an inability to voice what he must be suffering. Ok, fine, and – yes – I do have empathy and 99% of the time I’m fine with this whole situation. But….

Anthony is worse, in most of the above ways, than when he was diagnosed. To me, this indicates that the sinemet is not quite keeping up with the progression of the disease. He is terribly reluctant to take more pills so it would be great if there were a pill with a higher mg content so he wouldn’t feel as if he were taking heaps. Someone has scared him re the fact that eventually he will become resistant to the drugs.

Once again, I do not want him to know I have said all this to you. It is very important that I seem calm and cool to him and I very much regret being upset and nasty with him the other day. Anthony is not a fighter, once attacked. He is strong, he is resilient, but he seems to crumple in the face of adversity. I do not want him to know any of the bad stuff that may be coming, so please don’t tell him.


Julie G

It just feels like yesterday….


Blog email notification mystery

For some reason I am no longer receiving any blog notifications via email. This means that I will need to go to the Reader to catch up I think. Have any other bloggers been encountering this problem? In the meantime, it is going to take me awhile to catch up on blog friends’ posts.


True love

My young friend found this the other day. It was created by her brother Nick when he and Ming were little.




It’s been a busy week, punctuated by strange occurrences. For example, as I rode my bicycle home the other day (from my incredibly long 2 kilometre challenge), I took a short-cut across the front lawn and saw this:


I assumed that it was a cowpat (you know, the stuff that comes out of a cow’s bottom, ordinarily called cowshit but I am being polite), but none of our neighbours’ cattle usually visit, so then I thought maybe the alpacas, Okami and Uluru, had had a pooing competition, but the pile of whatever-it-was was too big to fit either of these possible scenarios, and, even though geese and ducks produce a lot of this kind of thing, they tend to do it all over the place and not in one spot.

Later in the day I told Ming about it:

Me: There’s this huge pile of shxx on the front lawn – have you seen it?
Ming: No, it’s probably your stupid birds.
Me: No this is massive and it looks really weird, like a UFO or something.
Ming: Don’t worry about it!
Me: Would you mind coming out and having a look?
Ming: Grrr – okay.

So I showed Ming and he started to laugh hysterically.

Me: What’s so funny?
Ming: Remember that pea soup you made and forgot to put in the frig and asked me to throw out?
Me: Oh.