wings and things

Disorientation dilemmas

Over the last couple of weeks I have become more and more reluctant to take Anthony out of the nursing lodge to either bring him home or elsewhere, even with the use of the wheelchair taxi, because of how often these ‘outings’ sort of backfire.

One of the nurses said to me the other day that when he gets back to the nursing lodge he is often moodily unhappy and it has been suggested to me by friends, family and staff, that taking Ants out of an environment he is still adjusting to might be detrimental rather than delightful. Now, in principle, I already knew this because I spent many years working as a nurse, then undertaking a PhD about dementia and finally having a book published. Wiithin that book, I devoted a chapter to this very issue, so I do know.

Back then I was writing about a patient who always wanted desperately to go home so one day, I took him out for a walk up the street and, instead of being delighted to get away from the nursing home, he became even more disorientated and I had to bring him back much sooner than I expected. It was a humbling experience because I had thought, at the time, that I would cheer him up but that little venture out exacerbated his confusion and he was more agitated than usual for a couple of days. Yes, I felt bad but I also learned something.

That was years ago – well before Anthony and I were married. I told him the story of this man and Ants was proud of me for undertaking the thesis and he said I was too kind and I should have just left the situation alone. He said, “Jules, he needs to settle.” Ants felt so sorry for that man.

Now he is that man.


I am pregnant!

I bet that shocked you! Of course I am not pregnant; after all I am 53 and Anthony is in a nursing lodge. But I keep having dreams about being pregnant and they are so real that I wake up in the morning and am surprised that I am not pregnant.

Last night, everything in the dream was initially as it is in real life: Ants was in the nursing lodge and Ming was 18. Then it got really bizarre because in the dream I had only just given birth to a beautiful little girl, to find myself pregnant again. I was bewildered at how this could be possible and my friends were looking at me askance as if I were some sort of alien, or else had dabbled in an affair. I woke up whilst still pregnant and trying to figure out how and why this had happened.

I don’t find these dreams disturbing at all; I find them rather interesting adventures. Also it is easy to see why I might be having these dreams: (a) the birds are madly mating, and loudly, because it is Spring; (b) Anthony has begun to think I have found another man; (c) Ming is giving me the whoops; and (d) Tapper, the duck, is still sitting on her eggs hoping they will hatch. As for deeper, psychological interpretations, well that is probably a minefield that I would rather avoid at the moment.

Perhaps these dreams are a signal that something really great is about to be born. That would be good!

[Or perhaps it’s just that we are inundated with eggs, the peafowl keep pooping on the chookhouse, or I need to go to the gym? Who knows!]



Before Ming was eighteen months old, I had over three huge albums with photos. I couldn’t bear to get rid of any of these pictures of Ming, even the ones in which I’d accidentally missed his head completely and all that could be seen was a torso, a nappy falling off and stubby, grubby little legs.

Those faulty photos, in which Ming’s eyes glowed bright red, became his favourites. “Ming dwagon – Mummy look!” he’d exclaim, delighted.

I’d show my albums to anyone who seemed remotely interested, but it wasn’t until my mother got a fit of the giggles that I realized I was overdoing it – just a bit.

“Julie, all of the photos for fourteen pages are exactly the same – just Ming sitting in the baby bath,” she laughed.

“No they’re not, Mother,” I said, indignantly. “Look closely – in this one he has that coy expression; in this one he’s twitching his nose; in this one he’s scrunching his eyes; and in this one he has bubbles all over his cheeks. And see, here, over the page, the light is slightly different, so his eyes look bigger and….”

By this time my mother was hysterical with laughter. “But it looks like pages and pages of quadruplets,” she spluttered.

It was months before I took another photo!

Eventually I got my ‘photographer’s’ confidence back, but by this time Ming had, unfortunately, developed whiskers. Not real whiskers, of course, but black texta does have a certain texture about it, especially if applied thickly and often.

It was the Pokemon creature, Raticate, who provided the inspiration. Raticate, being rat-like, had whiskers that Ming just had to have. His first attempt wasn’t so successful; he ended up covering most of his face from the nose down with black lines and then got a terrible fright when I showed him a mirror.

After that, it was my job to draw the whiskers onto Ming’s face. Ming became more and more particular about each hair-like stroke of the texta. One application would last around three days because he violently resisted having his face washed. “MING’S RATICATE WHISKAS! MING’S RATICATE WHISKAS!” he’d yell repeatedly, frantically avoiding the sponge.

The trouble with all of this was that I wanted to take the next series of Ming-photos and the whiskers didn’t fit my vision of cute. Neither did the fierce scowl that accompanied the whiskers, for a truly authentic Raticate look.

But, like many things, I got used to the whiskers, so much so that after awhile they just seemed a natural part of Ming’s face. I started taking photos again. So I now have two albums of identical photos of a severe looking two-year-old boy with what looks decidedly like a moustache! The phase only lasted a few months. Gyarados succeeded Raticate and, although Gyarados didn’t have whiskers, he did do a pretty effective water attack. “SPRISE ATTACK!” Ming would yell.

Give me whiskers any day.

I miss Pokemon!



King: Julie hasn’t been as attentive to us as usual. Have you noticed?
Prince: Yes I have noticed!

Frosta: Yes, I’ve noticed it too, guys, and I’m a bit hurt too, but from a female perspective, I understand that she is simply going through a blue wren phase.
Prince: What’s a blue wren?
King: Those stupid little birds that flit around our heads all day.

Parkinson’s disease, in its final stages, can lead to confusion, depression, hallucinations, delusions, moodiness, dementia, and paranoia. Ironically, some Parkinson’s medications can also have these kinds of side effects which is why it is such a difficult disease to treat. Until recently, it was Anthony’s physical debilitation that was the primary concern. Yes, hallucinations were a big problem but that was eventually improved by some changes in medication.

So the nursing lodge decision was made on the basis of his physical disabilities – immobility and incontinence (and other factors). But lately, there have been some signs of psychological problems. His confusion in the evenings has become a constant and his depression too, and  last week I blogged about his uncharacteristic anger with me. Today, when Ming and I visited, he was different again. He had a strange, suspicious expression in eyes (eyes which are so difficult to read now) and he began a mumbled diatribe about the nurse who had showered him this morning, saying that she had kicked his foot and hurt him. He even used a few insulting expletives so I left Ming with him out in the sunshine and went in to talk to the head nurse.

This is only the second time I have raised an issue. The first was last week when I told her that his anger with me was a new thing, and today, without going into exactly what he had said, I mentioned that he seemed to have something against the nurse who showered him this morning. I admitted that I didn’t know if he was delusional or if she had actually been a bit ungentle with him and emphasized that his complaining was, like this new anger, uncharacteristic. She said she would look into things tactfully and we both agreed that it may be a new symptom of his PDD. I said I would see his doctor asap to see if his meds. could be altered (for the millionth time) to address this new out-of-character behaviour.

She said that he was occasionally a bit rude and nasty to staff, especially if their ethnicity didn’t match his and I was a bit shocked and reassured her that this, too, was completely out of character. She patted me on the back and Ming and I came home a little stunned by this rather rapid change in Anthony’s personality. The other thing that has been happening lately is that he has begun accusing me of having a boyfriend (which, of course, I don’t!) and previously he was never the jealous type.

I hope we can do something about this because it is very worrying. I mean if he is nasty to the staff they are hardly going to love him are they. So this is a real dilemma in terms of his care.


Love story 109 – Cold

I find it almost impossible not to worry about Anthony, especially in the evenings. I ring and speak to him every evening and he is often confused. Tonight he said he was still in town, that he was really cold, then asked me when was I coming to pick him up. I jollied him out of it by saying that the nurses would put him to bed soon and I reminded him to ask for an extra blanket. I managed to reassure him.

I could hear the grin in his voice when I said, “Okay, schnookums, see you tomorrow”, and he said, “Goodnight baby, I love you.” He was unhappy when I rang but happier when we finished the call. Phew!

A few minutes later I began to worry about him being cold, about whether the nurses putting him to bed would be gentle, about his nightmares and even about how tomorrow would pan out before I got in to town to see him. Usually I don’t let myself worry like this. Usually I make myself believe that he is okay because, as far as his physical care is concerned, he is in very good hands and the nursing lodge is superb. But I worry about him being miserable and I feel so impotent at this time of the evening.

The cold thing is yet another symptom of how the Parkinson’s disease has affected his ability to interpret things like temperature.  He feels the cold terribly and has done for a few years now, even if it is hot. For example, he used to say his feet were freezing and I would feel them and they would be warm as toast. Conversely, he would sometimes say his feet were burning hot and I would feel them and they would be cool. It never seemed to match with the actual temperature and it became a constant night-time job when he was still home. It was always either a toilet or a temperature issue that caused him to call ‘Jules, Jules, Jules!’ until I got up and helped him out.

So that’s why I worry now. Does he call out for me in the middle of the night at the nursing lodge? Does anyone hear him? He isn’t good with finding or ringing his bell, or using the television remote or even dialling a phone number. One of the nurses says that he sometimes yells out, “You, hey you!” because he can’t remember anybody’s name.

I don’t usually let myself get worried in the night because it is too unbearable to wonder if he is okay. He should be asleep by now so there is a certain amount of comfort in that and he apparently sleeps very well now, so that is good. I don’t usually let myself miss him as much as I do tonight but sometimes I have to let the reality of what is strangely akin to a separation or a divorce to seep into my psyche and I almost stop breathing from grief.

He will never read this because his cognitive abilities are faltering, so all I can do is to say here what I say to him over and over every day: “I love you, Anthony.”

And please, God, don’t let him be cold.


Our blue wrens!

As you can see from the following pictures, I have discovered the secret to good photography. You will have to read below to find out how I accomplished this.

The secret to good photography is to get someone else to do it. These are courtesy of Elen Wood. Thank you Elen!


Love story 108 – Ming’s tail

From the ages of about two to four, Ming wore a tail. At first it was a skipping rope with one handle missing. I’d get him dressed and tuck one end into the back of his shorts and off he’d go. The rest of the rope would drag on the ground as he walked, ran and played. The tail became so much a part of Ming’s identity that if we couldn’t find it there would be a frantic search.

Anthony I got used to shouting desperately, from opposite ends of the house, “Have you seen Ming’s tail?” This became our morning routine!

During this period, even though he didn’t always wear it at home, there was absolutely no way Ming would leave the house without his tail attached. “Where’s my tail?” he would wail. Once, when we couldn’t find it, and then I remembered it was soaking in the laundry sink, I had to ring the pre-school teacher to say he’d be late because his tail wasn’t dry yet. This happened a few times so that even she began to see this as a perfectly normal excuse for being late. She told me once that she’d had to speak to the whole class about not touching Ming’s tail after it had been pulled out once too often and he’d dissolved into furious tears.

Inevitably, the skipping rope split and we had to find another tail, before the trauma of not having one left long-term psychological damage. Not to Ming – to me! I just couldn’t imagine him without his tail.

Ming was surprisingly mature about the disintegration of his old tail after I said that, of course, we’d get him a new one. “I’m sad but I’m okay, Mummy,” he said stoically. “I’m gwowing up, so I jus’ need a black furry one now,” he reassured me.

This happened on a Saturday, so I left Ming home with Anthony (well Ming wouldn’t come to town tail-less anyway). I searched the toyshops all morning in vain. Each time I asked, “Do you stock tails?” I’d get a bewildered response. I could have bought another skipping rope or any sort of rope, but Ming had graduated to black and furry and I respected that.

I rang Anthony who told me that Ming had been weird all day – not himself at all, quite moody, in fact. “He says he doesn’t feel good without his tail,” Ants said, laughing quietly.

We made the quick decision to give him a black woollen tie of Anthony’s that he had only worn once before anyway. “You’ll have to run out to the car when I get home so he thinks I found one in town,” I said. And that’s what we did. When I got home, Anthony and Ming raced to the car but Anthony won and secretly tucked the tie into my bag while we both told Ming to close his eyes and open his hands.

I put the tie into Ming’s hot little hands and he opened his eyes. He stared at it for what seemed like ages before he looked up at me, tucked the narrow end into the back of his pants solemnly and said, with serious joy, “It’s sooo wicked; look, Andony. Isn’t Mummy awfulsome!”

What a relief, and I took all the credit even though it should have gone to Anthony.

I wish Ming remembered these days.



Guinnea trying out a new move



Queenie is our oldest peahen because I purchased her and King as adults. All of the other peafowl came as littlies. Queenie and I have a rather special relationship although we do disagree on some issues. She is a rather radical feminist whereas I tend to waver. She has successfully negotiated a relationship with her husband, King, whereby he only visits when she says yes. King understands because he can see how hard Queenie is working on training the younger peahens. King’s method of training the young peacocks is to play tag around the house.

I think the reason that Queenie and I get on so well is that we are both contemplative. I love her!



I watched two of Ming’s favourite television shows with him tonight, we ate pizza, and we laughed together.

What a wonderfully simple way to reconcile our differences and rebond. I haven’t watched television for months and now I am addicted to two shows  – take a guess which ones!

Due to our circumstances, I think the three of us – Ants, Ming and me – have made our love for each other too complicated, too intense, too anxious.

We need to lighten up and get back to the simplicity of watching television together.

Okay, I will tell you what the first show is: Home and Away. I am not giving away what the second show is/was.

Television is quite relaxing isn’t it!

Simplicity rocks!