wings and things

Still Anthony

One of the things I’ve been most grateful for over the last few years of Anthony’s dementia is that his personality hasn’t changed. He is still easy-going, gregarious, humorous, accepting and gentle. Like Alice in Lisa Genova’s book, Still Alice, Anthony is still Anthony.

Or he was.

The other day, about an hour before Ming and I were due to give a talk to a group of Dementia Practice students, he rang me from the nursing home to say that Anthony had broken a staff member’s hand.


Apparently Anthony has been exhibiting out-of-character behaviours recently, partly due to a urinary tract infection. He is antagonistic and physically resists being put to bed etc. It is painful for me to imagine such scenes as Anthony doesn’t behave like this when I am there so this has come as a shock to Ming and to me. I also feel terrible that someone was injured.

But, picture this:

You have no idea where you are. It’s 4pm but you don’t know that. Two women in uniform approach you with a big piece of machinery [hoist].They are trying to explain something to you but you don’t understand – something about a bed. As they begin to undress you, you try to say no, that you are cold, but you can’t remember the words so you lash out. You are so terrified that the adrenaline kicks in and you fight. If you could flee, you would, but your legs won’t work. You wonder where Julie is and why she’s not there. Who are these women, with their gentle voices and strong arms and why are they putting you into the machine?

Anthony is scared.

In one of the support groups I attend, a woman recently described how her husband’s gentle personality switched overnight; he became angry, jealous and threatening. She said, “I didn’t recognise him. He was a different person.” At the time I thought how lucky we were that this hadn’t happened to Anthony.

Ming and I admitted to the Dementia Practice students that the possibility of Anthony’s personality changing was a brand new challenge. Perhaps I should visit later in the day than earlier so that I can calm Anthony down. I know I thought of this idea ages ago, for different reasons. I’ll ask the staff what they think when I go in today.

I have been preparing myself for the possibility that one day Anthony might not recognise who I am.

It never occurred to me until now that one day I might not recognise who he is.


Anzac Day

Today is Anzac Day (fyi so I went into town this morning to join Anthony for the nursing home’s memorial ceremony. Many of his forbears fought in various wars and he has always become very emotional, as his mother used to, on this day of remembrance, so I wanted to make sure he was okay.

I was surprised to find that he wasn’t particularly interested. The ceremony was an abbreviation of those held elsewhere, probably due to having to fit it in between breakfast and lunch routines, and the usual under-staffing on a public holiday. I sat next to Ants with my hand on his arm during the service but now that he is so bowed over (partly due to Parkinson’s disease and partly due to his spinal condition) he no longer looks up so I had to kind of hold his head up when the flag was raised.

By 11am we were back in Anthony’s room and he was very wobbly (‘wobbly’ is the term we coined some years ago to describe what happens when PD is in full force; his eyes become glazed, he begins to dribble, and he can’t move, talk, focus without prompting). A nurse came in at 11.10am to give him his 11am pill but none of his meds seem to work like they used to so I had to feed him his lunch using a spoon. Like all of the residents in the high care wing of the nursing home, he has to wear a bib. We bantered a bit (well I did) about me having to feed him like a baby and that garnered a small smile from him.

By 1pm, I wanted to go home to my chores and said so. Anthony briefly rallied asking why he couldn’t come too and (for the zillionth time) I explained that, as it was already the afternoon, he would just get more wobbly and too heavy for me blah blah, and he gave me the usual stony look. I then reassured him that I would bring him home tomorrow morning because my youngest brother is visiting with his youngest son.

Tonight I rang Ants at about 6pm and he answered it (yay!) but I had to shout because he has forgotten that he has to hold the receiver to his ear, despite how many times I have showed him how. I could hear his voice saying ‘hello’ but as if from a great distance, so I yelled, “PUT THE PHONE NEXT TO YOUR EAR!” He finally did so and this was our conversation:

Me: It’s ME, Julie, your wife!
Anthony: I don’t know where Julie is.
Me: I’m Julie – it’s me, Ants!
Anthony: Oh, Jules ….
Me: I’m just ringing to say good night.
Anthony: Tonight?
Me: I’m ringing to say good night, Ants.
Anthony: Oh that’s very sweet of you.
Me: So I’ll see you tomorrow morning, okay?
Anthony: Where are you?
Me: I’m home.
Anthony: Is Mum with you? (He meant his own mother who died decades ago).
Me: No, but Ming is. So I’m saying good night and I love you.
Anthony: I … you … bye….

Next year will be the 100th anniversary of ANZAC day and I wonder if Anthony will still be here. If he is, I know for sure that he will not remember what the day commemorates because once dementia kicks in, it kicks hard and that is what is already happening.

The photo below was taken by Jane, one of Anthony’s nieces, at his 75th birthday party here, over three years ago. He doesn’t look like this anymore.

Anthony listening to speech



Parkinson’s disease and paranoia

Well I was wrong about Anthony not remembering last night’s incident. I just spoke to him on the phone earlier this morning and he said ‘they’ are doing terrible things to him and that last night he decided to fight back. “I wanted you to come in and see they are testing me.”

I tried to explain that the staff were just trying to put him to bed, but he wouldn’t accept that and so I said Ming and I would be in this afternoon. He said okay in a tired, defeated voice.

Since then I’ve been looking at various articles about Parkinson’s disease (PD) and Parkinson’s disease dementia (PDD) that discuss paranoia and psychosis in the latter stages of the disease. The fact that Anthony remembers last night, and still maintains that he is somehow under attack, indicates that paranoia has well and truly landed on our doorstep.

In the literature about PD that I’ve read over the years, it is stated by many that symptoms like hallucinations and paranoia are not only symptoms of the disease but may also be side-effects of the medications. What a dilemma! Ants has had hallucinations for years and lately I have noticed them getting worse (not in a disturbing way – it’s usually just dogs in the room) but in terms of frequency.

The increase in hallucinations exacerbates the paranoia because if Anthony thinks a tablecloth is his dessert, or that a dog is sitting on top of his television, or that Ming is sitting in an empty chair, or that a spoon is a lizard or that the polka-dots on my shirt are flies, then it stands to reason that he might also see a nurse as a torturer. Especially if it is late in the evening and he is already tired and confused.

It probably seems harsh that I yelled at Anthony on the phone last night but I have found this to be quite effective in the past when gentle words don’t work. Cruel to be kind I guess and it kind of shocks him into a tentative acceptance of what is going on. Last night he didn’t believe me that the nurses were nurses until I yelled at him. Obviously, if I lived closer than a half hour drive I would have gone into the nursing home, and maybe I should have gone in anyway, but the nurses reassured me on the phone that Anthony had calmed down a bit, so I let them handle the situation and I hoped for the best.

In the past, it has helped Anthony a lot when I have explained the link between PD and hallucinations so this afternoon, when Ming and I see him, I am also going to tell him about how paranoia is also part of his condition. I think if he knows this it will help him cope better with the night time ritual of being put to bed by the nurses.

Time will tell.

The photo is from two years ago with ‘Doc’ (now deceased) on Anthony’s lap, and ‘Jack’ the Irish terrier we got Anthony as a surprise birthday present when he still lived here at home.



Out of character

Anthony has begun to behave aggressively towards some of the staff at the nursing lodge, especially one new, young nurse. I haven’t met her yet (there are so many!) but yesterday the nurse in charge told me that he had thrown a cup of water at her, and that she is nervous of him.

I already had Anthony loaded into the car and was just waiting for the head nurse to give me his meds, when she told me this, and all my enthusiasm for Fathers’ day plummeted. I asked her to apologise to the new nurse and explain that this was totally out of character.

I wasn’t going to mention it to Ants on the way home to the farm, but I couldn’t help myself. He said he couldn’t stand them, the way they told him what to do and made him go to the toilet etc. Even though he was stuttering quite badly (a worsening problem), his furious frustration filled the car. All I could think to say was to ask him to please not turn into a cantankerous old man or the staff would hate him.

I just want to be with you, he said, as we pulled into the puddled driveway.

Ming bounced out of the house, all primed to help, but that willingness didn’t last long, so that upset me too. I just don’t understand how such a compassionate young teenager could turn into such an intolerant older teenager.

So both my boys are out of character. Yesterday, I felt like I was meeting two new, rather disagreeable people, who I would not invite to lunch again.

That said, I have now told them both that it’s about time they gave me a bit of consideration and that although I love them both, I don’t particularly like them at the moment.

They are both in shock – ha!


Home is where the heart is

I had planned to get Anthony home today, then decided to wait until the weekend so I could also invite some friends to see him. So I left a message with the nursing staff this morning, then rather guiltily rang him this evening. I needn’t have worried because Anthony thought he was home anyway. This is how our rather strange conversation unfolded:

Anthony: Jules, I’m at Bythorne [that’s the name of our farm]
Me: Are you?
Anthony: Yes, where are you?
Me: Well I thought I was at Bythorne.
Anthony: That’s okay then.
Me: Why do you think you’re at Bythorne, or are you kidding?
Anthony: I don’t just think I’m at Bythorne; I AM at Bythorne.
Me: I thought you were at the nursing lodge.
Anthony: No, I’m at Bythorne! When are you coming home?
Me: I won’t be long.
Anthony: That’s good. I miss you.
Me: Well you sound pretty happy.
Anthony: I am! I love you, Jules.
Me: I love you Ants.

The dementia that is part of Anthony’s Parkinson’s Disease always kicks in after sundown (I blogged about ‘sundowner syndrome once before). But this is the first time he has thought he was at home.

I felt a surge of joy about this because he sounded so happy, but it was a bit surreal.


The gift of listening

Years ago I wrote my PhD about the importance of listening to people with dementia who were still able to speak. In the process of turning the thesis into a book for publication, I began to realize the importance of listening in general. At the time, Ming was a little kid and Anthony wasn’t so ill, so I would listen to Ming’s babble and Anthony’s hearty stories with equal attention.

Listening is not always easy because sometimes what you are hearing may not make sense, might be boring or inane or moany, could be longwinded and require patience.

To listen, you have to be able to shut up for awhile, give your own voice a break, and focus on the person you are listening to.

Yesterday, after my altercation with Ming, he broke down and begged me to listen to him and I remembered, with a thud of remorse, that he had been asking me this for some time.

So we sat down together, cried our eyes out in separate chairs and then he began the story of his 3 days away at the Southbound concert festival.

As I listened, I saw how his face glowed in the telling of each episode. After two hours, we were laughing again and I asked for an intermission. “That’s okay, Mum, we can do Episode 3 tomorrow.”

I am beginning to think that the best gift you can give anyone is to listen to them.



It is hard to describe the dread that I try not to feel when getting Anthony home for the day. Despite the regularity of medications, advanced Parkinson’s disease (with a bit of dementia thrown in for good measure) can rear up in all sorts of unpredictable ways, minute by minute, hour by hour, day by day. For example, I never know if Anthony will be able to walk or not, talk or not, eat or not, go to the loo or not, understand or not – and the list goes on.

The other dread is of Ming’s plummeting mood when Anthony comes home. A relationship between an 18-year-old son and a 76-year-old father is not necessarily easy even without the addition of PDD so, when Ming tries to communicate and Anthony either doesn’t understand or doesn’t respond, Ming gets terribly hurt and wants to withdraw. I understand this and rarely try to manipulate the situation in order to make everything okay. Instead I let Ming go to his room and do his own thing because, to be honest, I too, want to withdraw from an Anthony who is mostly silent and unresponsive and often asleep.

Of course there are beautiful moments of mirth and joy and love, but they are few and far between now because Anthony has become very hard work. Walking him across a room can take forever if his feet aren’t working, conversation is staccato with miscommunication rife because Anthony often doesn’t ‘get it’. Ablutionary situations are very difficult, both physically (me lifting) and emotionally (Ants having to be helped).

The other thing I dread is Anthony’s inevitable question: “Can’t I stay here for the night?” where I have to say, “I can’t – you are too heavy and you need two nurses to help you in the night.” I have tried to deal with this question via humour, honesty and sometimes anger, sometimes tears, but he keeps asking me, over and over again, during every visit here or at the nursing lodge, during every phonecall. Sometimes I yell at him to stop torturing me but mostly I handle it calmly because I know he doesn’t understand/accept how ill he is, whereas I do.

This afternoon, we are doing something different. Most of my family – my mother, brothers, multiple nephews, nieces and various partners are gathering at my mother’s house for our traditional (but belated due to geographical distances) Christmas Eve dinner. I wasn’t going to get Anthony because it’s late in the day and I wasn’t sure if he’d be up to it and am still not sure. Then I thought I have to try. So the wheelchair taxi is picking him up from the nursing lodge at 5pm with an arrangement to pick him up and take him back at 7.30pm (at which time he is usually in bed).

Anthony is very close to my mother, brothers, sisters-in-law and their children so I hope it works out but, yeah, I do have a bit of that awful dread about the logistics.I am also excited! Of course it won’t all go perfectly – nothing ever does – but, on the other hand, you never know!


Love story 120 – Romance

When Anthony suddenly transformed from a macho machine into a rose-buying romantic all those years ago, it was a massive shock to me. As a macho machine, he was never demonstrative or loving or generous and I was so used to this that the ‘new’ Anthony took a bit of getting used to.  In the nearly 20 years since we’ve been married he has given me the most beautiful gifts: pearls (a few strings), silver bangles (around 20), expensive perfume, a carriage clock, an Omega watch, a couple of other watches, an antique lithograph (well he had wanted this himself), my first ever electronic organizer, my first laptop, a min-tv for my office, a beautifully framed picture of me at my graduation, two antique cameo broaches and the list goes on. Most of these were surprises but over the last few years, since he became too ill with PD to drive, he would tell me to go and buy my own Christmas and birthday presents with instructions like “Go and buy yourself a nice frock” which is ludicrous of course since I haven’t worn a dress since I was around five years old so I would come home with expensive jeans or boots instead! It wasn’t as magical to have to choose my own presents but after a year or so I began to look forward to this. I would ring him from whatever shop and tell him I was trying to choose between this bangle and that bangle and he would always say, “Get the best one, Jules.” So I would!

Don’t get me wrong. When the dairy industry was thriving and I was working, we were comfortably off, but not wealthy and Anthony, having always been extremely scroogy careful with money, continued to astound me with his birthday and Christmas gifts to me. But perhaps the best and most extraordinary gift was his ability to say “I love you, Jules.” The first time he said this, a few seconds before he proposed marriage, I laughed because I thought he was joking. For him the word ‘love’ was a definite taboo and whenever I had used it on him he had shrugged and grinned, but never reciprocated. Since the first time he said these words, he has said them every single day of our marriage and they have not lost their power.

Lately, love has become the main topic of conversation for him. When I am in the nursing lodge, or he is on a visit home, or on the phone, he talks about this big love we have for each other and his eyes smile even though his mouth can’t. He loves talking about love, so much so that I sometimes say, “Yeah, okay, I get it!”

After months of rather mopey misery on his part, Anthony seems to have finally accepted what is, so when I see him, his eyes light up, and he almost yells, “Jules!” He does this on the phone too and seems to have stopped begging me for the impossible – to bring him home to stay. Our conversations are lighter. Of course the confusion and disorientation of PDD is still there but this love-talk seems to bypass that and now, when I leave the nursing lodge, I say goodbye with a smile because I know he knows that I am in love with him too.

A few years ago


Love story 118 – Sunbaking

Anthony’s skin cancer operation has suddenly been fast-tracked to tomorrow (Monday) – yikes, I only got the phonecall Friday. Okay, for those who don’t know this, Anthony has a very nasty skin cancer right next to his left eye and it is painful, so it has to be cut out. This has to be done in hospital so he needs to be there by 9am and I still haven’t decided whether to get the wheelchair taxi and meet him there or take him myself. His mobility at this time of the morning isn’t good.

Over the years, Anthony has had multiple skin cancers either burned off (with that nitrogen spray stuff) or surgically removed. Many of them have been squamous cell carcinomas, not melanomas, which is good. He was born into an era where hats were worn haphazardly and sunscreen probably hadn’t been invented and, when I met him, he was in the habit of sunbaking after lunch to get a tan. Inna (his mother) would often ask me where he was and I would tell her he was lying out near the fig trees and she would tut-tut and say that was fine as long as I wasn’t sunbaking with him – ha! At the time, that would have been a dream come true for me but I am glad I didn’t as he has now had over 50 skin cancers burned off and several requiring surgical removal.

So tomorrow will be an adventure of sorts because of how his PD, and now PDD, is likely to affect the ordeal. The surgeon is not going to do the procedure with a general anaesthetic (too risky) so Ants will be given a local anaesthetic and sedation. The operation will take about an hour or so. I have to admit that I am absolutely dreading this because of what happened last time.

Last time, the skin cancer was on top of his skull so the pain he suffered afterwards was excruciating and his medications for PD were temporarily lost and he missed a dose or two: result, he went totally loopy and had to be on 24/7 watch. It was a nightmare just after the operation so I raced home to get his spare meds., raced back and sneaked him some and he was okayish for awhile but (this was a few years ago when he was more mobile) he kept trying to wander out of the hospital – argh!

Tomorrow I will have to arm myself with secret drugs – ha – and a double dose of patience with both Ants and the system. It is only going to be a day procedure this time and I’m not sure if this is a good idea or a bad idea – maybe he should stay one night in the hospital? I wish I knew. I have decided to take my box of paperwork in as I will be there for hours.

This is probably my overactive imagination but sometimes I can feel Inna’s smile of approval, almost as if she is kind of watching over her son, and me, and Ming. This is a good feeling.



A contingency is an unexpected or unpredicted event. I am sure there are deeper philosophical definitions but that’s who/how I see it.

So you cannot plan for contingencies because they just happen. I am learning how to be ready for them, to deal with them and to stop trying to figure them out.

Dementia is place where contingencies flourish, watered by leaking brain cells and lit by twilight. These contingencies are not funny or exciting like coincidences; they are cruel and cleverly shocking.

Over the last two evenings my phone conversations with Anthony have been disturbing as I described in yesterday’s posts.

So, later this afternoon, I am going to go into the nursing lodge and face this evening’s inevitable contingency with Anthony. We will have a small red wine with each other, I will make sure he eats his dinner (which he apparently refused last night), I will hug him and reassure him and I will talk to the staff and get their perspectives.

But I have a confession to make; I don’t want to do this because lately (despite the excursion out to the farm the other day), it is becoming an unpleasant experience for both of us. He makes accusations, begs to come home and sometimes rebuffs me – or else he clings to me, making us both weep when I leave to go home without him.

There must be a way of making this better – there must be. So many of my ideas have failed and, with each contingency, I have to rethink things again, over and over again, which is silly really because nobody can plan, organize, predict or be ready for a contingency.

And it seems self-indulgent to blog about a single situation when a hurricane had just devastated and killed so many, when millions are affected by ongoing wars, when children are being hurt, animals abandoned, forests dessimated – almost too overhwhelming to comprehend from my tiny little space of the here and now.

Once upon a time, Ants and I would have talked about these contingencies with gusto and passion because they were not our contingencies and we could philosophize from our coccoon of safeness.

Now we flutter, like moths with missing wings.