wings and things


For the last few days we have been babysitting two extraordinary little shih-tzu/godzilla crossed dogs for my beloved nephew.

In the two pictures below you can see that Missy (the littlest of the shih-tzu/godzilla crossed dogs) is an intimidating force. Jack, our Irish terrier, is going to need therapy for bewilderment. Can you see his expression in right corner of the second photo? Poor sweet boofhead!


Blaze, on the other hand (our 10-year-old miniature dachshund) seems to have fallen in love for the first time in his life – with BOTH Missy and Fergie!



But he is a bit overwhelmed.


And a bit tactless.


The bigger of the two shih-zhu/godzillas is named Fergie and, without any reference to the royal family, I have to say that she does exhibit a lack of inhibition in the way she continually interrupts the flirtation between Missy and Blaze. She may need some jealousy therapy, poor girl.I will also have to speak sternly to Blaze about monogamy!

Oh yes and Missy and Fergie disappeared the other day but that is another story!


Small mercies

I have just found out that my lifestyle assistant/occupation therapy role in the dementia house of the nursing home where I work part-time will now allow me to feed those residents who can’t feed themselves. I will also be allowed to serve food and drinks (previously a no-no due to the risks of choking/dysphagia) but now that I have seen the training dvd twice, and filled out the dysphagia quiz/questionairre, I am allowed to help, rather than hover, during mealtimes.

Not only that, the three of us who alternate in this role have had our 3-6pm shifts extended by an hour – to 7pm – which is a wonderful idea because it will allow for a more relaxing atmosphere before and after meals.

I am still finding my feet in this job and today I felt a bit at a loss when the wheelchair walking was limited to inside (due to the heat – 36ish) and, after taking F, Y and B through the inside of the complex, from house to house, I came back to find that M’s daughter had begun a very successful table ball game (rolling a plastic ball to and fro).

M’s daughter is really competent with this game thing, whereas I am still a newbie and not very good at playing games, so I am learning a lot from her. She visits her mother every single day at the same time and when I see her I feel relieved to have her bingo expertise!

It is hard sometimes to find ways to provide entertainment because I am pretty hopeless at card games and jigsaws and arts and craft; I much prefer a conversation and today B and I had a hilarious one.

E, the OT boss, says that to be unhurried is good and to go with the flow is even better but it is harder than I thought it would be to just relax into this role. The unpredictability of how each of the ten women feel each day from 3pm is, of course, the governing cue and if someone is anxious she is the first person I comfort either with a hug or a walk or a conversation. Today, S. was, as usual, crying so I said, “C’mon, S, it’s not that bad!” And she looked up at me, bared her teeth and said, “Okay, Mum!” We all laughed – residents and staff.

B said “Told you so” in her droll way, Y said “Leave me aloooooone!” and J, who hardly ever shows any feelings, smiled at me just before I was finally allowed to give her dessert.

Small, wonderful mercies!



Ming (our now 21-year-old son) is a bit of a character. He is loud and I mean LOUD, opinionated, sensitive, angry and has a biting sense of humour. He comes out with the most extraordinary statements, loves his friends ferociously, is a know-all, and often refuses to conform.

Due to these varied, sometimes contradictory, attributes, he and I are quite often at loggerheads about this and that, and these tiffs can be extremely unpleasant and we end up having to agree to disagree. But one of the wonderful things about our mother/son/dad-in-the-nursing-home relationship is our shared love of laughter.

For example, after a recent row (whispered because we were in the nursing home), Ming provided a solution which you can see at the end of this short transcript:

Anthony: Don’t fight, you two.
Me: I’m not fighting – he is!
Ming: Dad, she is … argh!
Me: Shut up, Ming, you’re the one with delusions of grandeur.
Ming: Okay, I’m leaving.
Anthony: Don’t go, Ming. Settle down, Jules.

Intermission: Ming and I sit down on either side of Anthony silently seething.

Me: What are we arguing about, Ming?
Ming: Well, you …. I don’t remember but you are …. wrong (trying not to smile)
Me: Okay, so you are always right?
Anthony: Steady on, Jules.
Ming: Don’t always cry, Mum! I’m sorry.
Me: I’m not crying – I’m smiling, you idiot!
Anthony: Ming, give her a hug.
Ming: I love you, Mum! I wish we could stop fighting.
Me: It’s probably normal, Mingy – it’s okay. We’re all tired.
Anthony: That’s better, you two.

Ming: Oh why can’t we all just frolic in the meadows?

And that’s where the laughter began – and I am still laughing!


Cycling in the countryside

Some time ago I purchased the most wonderful electric bicycle. Now for those serious cyclists who read this blog, please refrain from smirking; the wonderbike can be used as a normal bike but when encountering a steep hillock, or a cyclonic breeze, it is possible to press a little button and, yeeha! the electric buzz happens and before you know it you have zoomed through these difficulties. Wonderful! Of course, you then press the button off again so that you are cycling normally and not electrically.

I recently began cycling again after a long break. On Day One, I rode down our long gravel driveway onto our small country road and, pedalling against the ferocious breeze, ventured further, turning left onto the next country road. Ah, the peace and quiet, twittering birds, happily mooing cows – bliss!

Then, just as I was about to turn right into an even smaller country road there was an explosion of noise behind me and, using my newly purchased rear vision mirror, I was alarmed to see an enormous truck behind me, approaching fast and, even more horrifyingly, when I was about to escape to the smaller country road, I saw another massive truck coming towards me from the opposite direction. I had two choices: I could keep riding, feigning nonchalance, and hope that both trucks would see me, slow down, and the drivers and I could exchange morning greetings, OR I could stop my bike, hop off and catapult onto the closest verge. I decided on the latter just seconds before both trucks whooshed past each other with a blast of horns. I waved and smiled friendlily to the drivers from my position on the ground, my arms protectively around my bike, assuming the blast of horns was a type of country road greeting but strangely neither of the drivers smiled back.

So I got up and got back on the bike and rode the short distance to the even smaller country road but, just as I was about to veer right into this same road, another enormous truck (coming out of the even smaller country road) came to a noisy halt and politely let me into the road by a narrow margin. Again I waved to the driver who grimaced back. Oh well, I thought, not everyone is friendly in the morning.

But a couple of kilometres later, after several repeat incidents of the above, I turned around, pressed the button for electricity, turned it to the highest setting, and zoomed back home, only stopping here and there for the odd truck or ten!

Anyway, the Day One experience hasn’t deterred me and I still cycle every morning up and down and all around the safest possible country road: the driveway.


Wheelchair walking

My job as ‘lifestyle assistant’ at the nursing home, also shortened to OT (occupational therapist) continues to be thoroughly enjoyable. The shifts are only three hours – from 3 to 6pm and I do an average of six shifts per fortnight so it’s not a lot of work but hopefully I will get more shifts in the future.

The dementia “house” is set up like an open plan house with the kitchen and dining room in the centre, a sitting room with a big television, and ten bedrooms down three hallways, each with its own ensuite. Then there are a couple of separate little sitting areas as well as a lovely patio out the back, with a garden. Seven of the ten women are ambulant, some with walkers and some without, so there is a code to open the doors due to the risk of anyone wandering off.

I have now established a routine whereby I take one or two of the women for a long walk outside around the grounds and in and through the other four houses, all of which are designed in the same way except Anthony’s which is more like a hospital ward. If I come on duty and find anyone already in a wheelchair, I begin with that person and this week I started to take J. by herself because she doesn’t seem to ever have any visitors and, even though she can walk a bit she is difficult to manoeuvre and quite tall, so I use the wheelchair. I don’t think this has been done before because previously the OTs took her on short walks until one of them wrenched her shoulder doing so (J. has a grip of iron!) In the wheelchair it is possible to take her on much longer walks and she seems to really enjoy this although it’s difficult to tell because she doesn’t talk much and even when she does she is hard to understand.

I like to take her by herself for that whole one-to-one thing but sometimes one of the ambulant women comes too. We go out the locked door into the sunshine and gardens then through a small parking lot at the back of the nursing home then inside Anthony’s section which begins with a foyer, then a large activity room, down a very long hallway, saying hello to the residents in the rooms to the left and right (including Anthony of course!) then out to another garden area at the front of the nursing home, up a steep driveway at the top of which you can see the ocean, then left down a road that enters the section where the independent elderly live in self-contained units, all with beautiful gardens, around a roundabout and back to the ocean view. Then we go back down the driveway and into Anthony’s section again, turn right to go through the dining/living area up another hallway and then back down and out into another garden area, then back down Anthony’s hallway, waving to him on the way (which he finds extremely amusing) then, once outside again, instead of turning left which leads back to the dementia house, we turn right and head up the narrow driveway past two other nursing home houses and up a hill to where there are other self-contained units. Sometimes the residents will come out and say hello to us and have a chat; then we turn around and head back to the dementia house. This takes around half an hour. Once back, I pick up F. or O. or D. and begin again. And again, with different people.

One of the things I have found most difficult about these wheelchair walks is walking slowly. It’s like the way you have to walk up the aisle! I am ordinarily a very fast walker but having already frightened the hell out of two women who thought they were about to be catapulted out of their wheelchairs, I now walk extremely slowly in a smell-the-roses way (and there are lots of roses to smell because the gardens are beautifully kept).

With the weather so beautiful lately this seems to me to be the best activity and my goal is to get all ten women out and about during one shift, but so far I have only been able to get seven out and about (yesterday), because dinner is served at 5pm.

The wheelchair walk tends to calm even the most agitated of the women down which is pretty much what I am there for as this time of day is notorious for ‘Sundowner Syndrome’ an anxious time for many people with dementia who may remember it as a busy time of day, getting dinner ready etc. B. who walks without any assistance, becomes increasingly anxious about getting back to cook dinner and when is her husband coming home? S. cries a lot, and O. becomes aggressive. The long, slow wheelchair walk seems to calm these anxieties to some extent and I much prefer doing this than singsongs and card games.

The sunshine, fresh sea breeze, gardens full of late blooms, and interaction with residents and staff outside the dementia house, is, I think, the most beneficial thing I can do in this wonderful role. The fantastically weird conversations we have with each other outside create a rapport and laughter that isn’t as easy inside.

Me: Are you enjoying it out here, S?
S: Not particularly.
Me: (laughing) What?
S: You cheeky man!
Me: I keep telling you I am not a man!
S: Oh, sorry (starts crying)
Me: Stop it – I was only joking. Do you want a hug?
S: Yes, please (we hug).
Me: If you start crying again I will bop you (laughing)
S: I’ll BOP YOU, young fella!


Me: Do you want to go for a walk, Y?
Y: Leave me alone, leave me alone, leave me alooooooone – doesn’t matter.
Me: Your chariot awaits (pushing wheelchair next to her).
Y: Oh all right, all right, all riiiiiiiiight.
Me: See! Look at all the flowers, Y.
Y: Pretty. Pretty flowers, pretty flooooooowers.


Me: Do you want to come for a walk, B?
B: Oh I don’t think there’s time. X. will be home for tea soon and where are the boys? What’s the time? Do I need my lippy (lipstick)?
Me: It’s only a short walk and I need you to help me with O. (O. in wheelchair).
B. Well as long as we’re not too long. Have you seen my handbag?
Me: We won’t be long and X (deceased husband) doesn’t mind.
B: Are you sure. Could you ring him?
Me: Somebody already has and it’s fine.
B: Well I suppose it’ll be all right. Just let me get my handbag and put my lippy on.
[15 minute search for handbag]
Me: Come on B.
B: Oh I think I should stay put. X. won’t know where to find me.
Me: He knows exactly where you are and we won’t be long anyway, B.
B: Oh well I suppose so but what about money? Wait a minute darling I just have to put my lippy on.
Me: B, I really need your help with this wheelchair.
B: Of course.


Me: O. do you want to go for a walk outside using the wheelchair?
O. No, no noooo – I don’t want the red with the pink. What is this? Stupid!
Me: How do you like the sunshine?
O. Too HOT – too fast, slow down!
Me: Sorry, sorry.
O: Slow down!
Me: We are crawling now, O.
O. Oh you crazy one – crazy crazy (guffawing).

Of course there are many more conversations, lots of silences and miscommunications, but the wheelchair walking routine I’ve now established is a winner in so many ways!


No sweat!

In order for this post to make sense I need to remind people that last summer I developed a condition called ‘pompholyx’. It initially announced itself on the sides of each of my fingers in the form of tiny blisters that, due to their itchiness, I scratched, so for weeks, then months, I battled with blistered and/or scabbed hands (and, oh yeah, my left foot).

It nearly drove me mad and none of the various cortisone or anti-fungal creams worked very well. I researched my condition and found lots of gross photos and horror stories of frustration posted by other sufferers, all of which I showed my doctor. One common denominator, in terms of cause, was excessive perspiration: hyperhidrosis.

During the Australian summer, temperatures often reach/exceed 40 degrees C which means that for several months of the year people tend to look rather moist, including me. Then, last summer, my perspiration went into overdrive and my hands, head and face became rivers of volcanic overflow so much so that, if I shook my head the way a dog does everyone near me would be sweat-splattered. The worst thing, though, was my blistery hands; the little blisters would become huge blisters and, yeah, they leaked too. I felt as if I had been catapulted into some sort of science-fiction parallel universe where the sweaty people were excluded. In other words it is a very embarrassing condition.

When winter arrived (autumn is almost unnoticeable here) the relief was enormous for me. As the rain poured and poured, I stopped pouring and my hands nearly healed. But then (a couple of months ago) summer came back and so did the hyperhidrosis and pompholyx.

Interestingly, this second bout has seen a worsening of the HH but a diminishing of the PX. But I went to my doctor regarding both and he is going to research how we can stop this embarrassing, excessive perspiration. Good.

I then went to a podiatrist who looked at my left foot (the sores resemble burns) and she recommended an over-the-counter antiperspirant called ‘SweatStop’. Well, I couldn’t find that exact brand but I did find a few products containing the active ingredient aluminium chlorohydrate so I bought them.

Well, it WORKS! Once applied to the affected areas, it stops the sweat glands somehow. It’s a bit uncomfortable and has made my previously sweaty hair dry and brittle and my hands dry and scaly but it’s a hell of a lot better than dripping my way into every single day.

The most hilarious thing about this is that Anthony’s Parkinsonism has affected his internal thermostat so severely that he is ALWAYS freezing, even in the middle of summer! The first thing I do when I visit him is to turn the air conditioner off, put a jacket on him and then a rug on his knees, by which time I would ordinarily be oceanic with perspiration. Now I’m just a little bit drippy!

No sweat!


The end of an era

Well today I said goodbye to the last of our geese, and the duck, Zaruma (pictured above). The first photos (below) are from 2011 when all except Godfrey were little. The latter photos show them all grown up. The reason? Too many casualties via foxes and the dogs who lately have been able to get out of their yard by hook or by crook and they attacked my beloved Zaruma the other day (that was my turning point).

So I was having to pen the birds 24/7 plus the dogs versus birds argument was becoming a regular source of conflict between Ming and me. So Ming advertised them on the internet and an animal loving couple came to pick them up at 1pm yesterday.

I was dreading it and didn’t even want to be here at the time but Ming was at work so I had to be. I didn’t want to see Woody, Seli, Ola, Diamond, Zaruma, and even grumpy old Godfrey, traumatised.

Well I needn’t have worried. Belinda and Tom arrived with a trailer and a few big cages, water containers, and when she saw my eyes fill, she gave me a big bear hug and told me to go inside while they caught “the gang”. So I did and wrote all their names on a piece of paper then made myself go back outside immediately to oversee things.

AMAZINGLY, Tom had simply gone up to Godfrey and picked him up, carried him to their station wagon and put him in a cage in the back without the slightest fuss from Godfrey! For those who don’t know, Godfrey is the gang boss and has been so protective of the others since they were little that he turned aggressive, and he BITES! But he didn’t even attempt to bite Tom.

Even though the rest are so tame I could easily have picked them up and put them in the other cage, I just couldn’t do it because I was so sad. So Belinda and Tom did it and talked softly to them to calm the more panicky ones (Woody – oh my poor heart!) and it only took around 10 minutes – smooth and gentle and I felt incredibly relieved!

Belinda and Tom live two hours away but they are better equipped, with huge yards for all of their poultry, big swimming ‘pools’ etc. so it’s wonderful to know they are going to a great place and will be there by now. We have exchanged email addresses so she can send me some reassuring photos, so I feel great about it all now.

But after they left, I cried like a baby. I will miss them and the amazing peace they brought me in the months before Anthony went into the nursing home.


Thank you, Belinda and Tom.
Goodbye, Gang.



Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.


Everything (a poem)

When you are inside the blah balloon
floating above the world,
tossed about by moody winds

you can see everything, EVERYTHING
up, west, down, left, north, right, east, here, south, and, yes, there too!

And in between all of the circumferences, you have
a clear, detailed view
of the whole wide world, but

from the blah balloon, your view is distorted
by plastic
and motion sickness
and fear of falling.

So what do you do?
Do you stay inside your safe, up-in-the-air balloon
upset and shocked that in the whole wide world
you are absent?

Or do you scream triumphantly,
pierce the wall of the balloon with your un-rude finger,
fall to the ground with a THUMP

stand up,



About the last post

I am not as bleak as I sound but I was terribly blah and a bit sickly over last few days, off and on. Previous post is first draft of first bit of proposed book perhaps better to start off more happily? Just want to be honest. Am going away next weekend so all is well.