wings and things


Whenever Anthony says something during our afternoons together, I either hit ‘mute’ on the television, or ‘pause’ if it’s a dvd.

This is so that I can listen and respond to whatever he is saying, or trying to say. His voice has become very whispery and sometimes croaky lately and, even when he does get the words out, they sometimes

The following dialogue is an example of how weird and wonderful our conversations can be. I am learning how to be unafraid of nonsense, to enter its world in an Alice-in-Wonderland kind of way, to talk, listen, laugh and pause.

Anthony: How did you know where to find me?

Me: Instinct.

Anthony: You have good instincts.

Me: I know.


Anthony: Can you get this calf to get out of underneath the….

Me: What?

Anthony: This bbbb mmmm toothpaste.

Me: What? Try again.

Anthony: The cat toothpaste.

Me: The toothpaste is free, Ants, and there’s no cat here. Anyway I thought you hated cats.

Anthony: There are five.

Me: You’re hallucinating but I’ll shoo them away, anyway; is that better?

Anthony: Not much.


Me: So, do you think I look different today?

Anthony: No.

Me: Ants, I am wearing a dress for God’s sake. I never wear dresses!

Anthony: Oh.

Me: So what is different about me?

Anthony: Your legs are shorter.

Me: Oh.

Anthony: Is Mum okay?

Me: My mum or your mum?

Anthony: Ours.

Me: She’s fine.

Anthony: Where’s Ming?

Me: He’s at work but he’s coming to visit soon.

Anthony: Does he know I’m at the Rose Hotel?

Me: I’ll tell him.

Anthony: Where is your mother?

Me: Why do you always want to know where my mother is?

Anthony: Well she should be here and I’m worried about her eyes.

Me: Can we just watch the show, Ants?

Anthony: Haven’t we seen this, Jules?

Me: Well it’s a series, so yes and no. We are now up to the third season.

Anthony: Can you bumblebee the cardboard over there?

Me: What?

Anthony: Can you mmmbrrr oh my words don’t. What’s the thing wrong again, Jules?

Me: Ants, you have Parkinson’s, plus you are really quite old. And you have very strange ears.

Anthony: I have perfect ears!


Anthony: You have a sexy stomach.

Me: WHAT? Stop looking at my stomach – I ate too much lunch!

Anthony: Look at mine – I’m thin.

Me: Well there’s no need to rub it in.


Anthony: There’s that baby again.

Me: It’s not a baby; it’s my handbag! See!

Anthony: I think we should go to Golden Valley [his childhood home].

Me: Not today. It’s too cold.


Anthony: Jules?

Me: Yes?

Anthony: Bbbb mmmm – oh I can’t speak.

Me: Do you want the rug on your knees?

Anthony: That’s the elbow, good.


Me: You’re adorable and I love you.

Anthony: Mmm.

Me: You’re supposed to say it back.

Anthony: What?

Me: ‘I love you’.

Anthony: I know you do.

Me: No, I mean you’re supposed to say ‘I love you’ back to me!

Anthony: You already do.


Me: I’ll show you a picture of Ming dressed up as a nurse for Halloween, okay? You are going to be shocked.

Anthony: Nothing shocks me.

Me: Okay, check this out!


Anthony: He is magnificent!

I rest my case: nonsense is a good thing!


There’s ‘a Julie’ in the mirror.

There is something beautiful about the fact that sometimes Anthony will see the same camellias I picked for him days ago as today’s – new and fresh.


The other day, as I was leaving Ants to come home, he spotted my reflection in his wardrobe mirror. (His armchair is in one corner of the room and, if he turns his head to the right, he can see himself in this mirror).

Anthony: There’s a Julie over there.

Me: (turning to face myself in this mirror) Yes, that’s me … actually that’s US in the mirror.

Anthony: Oh, of course.

Me: You idiot!
(Don’t be alarmed; Anthony quite likes a bit of gentle verbal abuse now and then).

Apart from the visual hallucinations (often of cats which is weird because Anthony doesn’t like cats), there is also a certain amount of visual confusion lately. Ants’ view to the left is through a window overlooking a lawned area where he often sees cattle; the newsreaders and/or characters on television are sometimes mistaken for real people to whom Anthony will often respond verbally; his walker can become a lawnmower; the staff going up and down the hallway are ‘kids’ or ‘teachers’ or long-deceased relatives; and the blanket on his knees (lately a source of enormous confusion as the day progresses) is unrecognisable to him as a blanket until ….

Me: Will you stop pushing the blanket off! I thought you were cold, Ants!

Anthony: It’s just … I don’t know what this is, Jules.

Me: It’s a blanket, to keep you warm, so I’m going to put it back on your lap and put your hands under it and, if you move, I will bop you!

Anthony: You’re beautiful when you’re angry.

Me: Argh!

This particular blanket has a tartan pattern and a fringe, and is one of ours from home. Other rugs and blankets (particularly those with patterns of any kind) can really confuse Anthony, but I have only recently realised this. For example, if the pattern is one of flowers, Ants might see these as real flowers and want to touch or rearrange them.

None of these visual hallucinations/misrecognitions currently cause Anthony undue distress, especially when I am with him. On the other hand, I sometimes wonder what he might be ‘seeing’ when I’m not there. When I think about this too much, I get worried, so I mostly try not to think about it for the sake of my own peace of mind. After all he is in good care.

But I just wish I could somehow leave myself in that wardrobe mirror so that whenever Anthony glanced to the right I’d be there….


…. like the camellias.


Hallucinations are not just visual

I’ve been reading some of Oliver Sacks’ work over the last few days. This wonderful, 82-year-old neurologist – most famous for his book Awakenings which was made into a movie – died last week.

When I was writing my PhD thesis on Alzheimer’s Disease, I referred to Sacks’ work often. I particularly liked the way he melded science with anecdote.

I found it particularly interesting today to read about people who have other-than-visual hallucinations. As it is many years since Anthony began hallucinating, I’ve developed a bit of a fascination I guess.

The fact that people with dementia, Parkinson’s disease and other various neurological disorders, often experience various sensory hallucinations, is well-documented in the academic world but perhaps not widely understood by the people on the ground, so to speak – the carers.

It seems important to translate academic findings into do-able care strategies but that doesn’t seem to happen enough in my opinion. Perhaps I’m in a good position to write about dementia better than I wrote about it before because I’m not studying it now; I’m experiencing its nuances via my husband, Anthony.

And I know it sounds weird but I do find Anthony’s condition, especially the hallucinatory stuff, fascinating. Here are some examples:

Visual hallucinations: baby on his lap; calves outside the window; Ming in the room (when he isn’t); children on the floor; dogs on bed; machinery in the room etc.

Auditory hallucinations: replies to conversations that aren’t happening; often speaks to deceased members of his family as if in response to a question.

Tactile hallucinations: feels there is a baby/child on his lap, or a puppy; will mistake his own hand for mine and kiss it.

A couple of years ago Anthony mistook the hoist that the carers were using to lift him from chair to bed as a pirate ship. I remember vividly the evening phone-calls from the nursing home from carers wanting me to calm him down (in retrospect this only happened a few time). This was terribly distressing of course but soon faded off as Anthony got used to the hoist. But sometimes he still says things that indicate to me that bed-time is traumatic.

Just the other day:

Anthony: They attacked me and took all my clothes off and fiddled around with my genitals.

Me: Ants, they were the nurses putting you to bed! Try to always remember that, please.

I wonder sometimes if the most feisty of dementia sufferers ‘see’ the carers as scary characters from pirate ships, as previous enemies, as terrifying strangers. The latter, I think, is probably the best way of describing what a person with advanced dementia might feel towards a caring nurse at bed-time – I don’t know.

Anyway, this was supposed to be a tribute to Oliver Sacks.

Maybe it is.


“Illness separated”


Yesterday I went to see the people who help people like me to access employment and/or volunteer opportunities. I thought it was about time I got out of my lady-of-leisure mode since resigning from my job at the nursing home several weeks ago.

The woman I spoke to (I will call her Sue) pulled up my records and I misheard her saying that Anthony and I were separated.

Me: No, no, we aren’t separated!
Sue: Illness separated?
Me: Oh, yes, I see. He’s in a nursing home.

Anyway, Sue was very helpful and asked me to come back today with various bits of paperwork that would help to get me back ‘into the system’.

Even though the phrase “illness separated” isn’t new to me, I hadn’t heard it for a long time so it shook me up a bit. Of course there is no other way to describe our situation in terms of the red tape but it still sounds weird, especially the “separated” bit. Oh well.

The views from Anthony’s nursing home window sometimes look uncannily like home and yesterday he ‘saw’ his nephew milking the cows outside and wanted to help. I looked out the window and tried to see what he was seeing (his hallucinations are, thankfully, happy ones mostly).


Me: It’s okay, Ants, he’s just about finished milking.
Anthony: What about the fences?
Me: Ming’s taking care of all that.
Anthony: How much money do we have in the bank?
Me: Lots, thousands!
Anthony: Okay.

I think we might fall into the category of “illness inseparable” now but that wouldn’t tick the boxes ha!


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.



One hour

It is 8.30pm and I haven’t seen Anthony today because Ming and I have been so busy cleaning up and organizing things for his 20th birthday party on the weekend. With at least 70 people expected, I am, to say the least, a tad nervous, but they are all wonderful kids, and a few of the parents are coming too in order to help keep things on an even keel!

So it is one of the rare days I haven’t seen Anthony. I warned him of this yesterday and he was okay about it and I tried to ring him a few times today but then gave up. He has definitely forgotten how to answer his phone now and I am becoming as frustrated as the many friends and relatives who keep trying to ring him.

When the nurse rang me half an hour ago, I was shocked to hear Anthony yelling ‘you bitch’ over and over in the background and when the nurse got me on the phone to him, he yelled at me too. Ming tried to talk him through taking the sedative (only needed occasionally) to no avail, and the nurse said she would ring me later. In the background I could hear Anthony yelling “get away from me, you bitch” and “Jules! Help me!” and to Ming, “I’m being tied up, Ming!” and “You’re like the rest of them, Jules, you bitch” and “I don’t trust you, come and get me right now, Jules!”

And this went on and on over several phone-calls back and forth from staff to me. This kind of episode doesn’t happen often – maybe once a month – so last time I took Ants to our doctor, I asked for something to calm him and he prescribed it. Tonight I said to the nurse-in-charge who first rang me that there was an emergency drug for this but, during a later phonecall, I could hear Anthony yelling “No!” and the nurse told me he wouldn’t take it or go to bed.

Sobbing with anxiety, I ended up yelling at Ants on the phone to pull himself together, take the pill, go to bed, stop yelling at the nurses, and that I would see him first thing in the morning. When he didn’t calm down, I screamed at him over the phone: “Stop it, Anthony, stop it! This is not you – it is the stupid disease – I will see you TOMORROW!”

I think he finally accepted this and the nursing staff said he was calming down and they would only ring me back if things escalated again.

And tomorrow? He won’t even remember. So was/is this a psychotic episode? Hallucinations? If so, what triggered this – not seeing me today?

But he sounded so terrified, hence his uncharacteristically abusive language. Five phone-calls, five minutes x five, and five moments when I decided to stop crying and to start yelling at him.

Will he be asleep by now? I don’t know, but I am so tired and defeated and shocked now that I’ve decided not to care about it until tomorrow. Otherwise I will go mad.

It is 9.30pm.


When every day becomes yesterday

When Anthony was home yesterday he kept talking to the television. I would come in and out of the kitchen where he was sitting (his favourite spot) and enter an already-there conversation. I was busy with washing and other chores (something I continue to do even if Ants is home, just to keep things normal-ish), but every time I came back into the kitchen he would be talking to one of his deceased brothers, or to the now-dead stove, or to the dogs on the table (hallucinations).

Ming cannot stand it – he just can’t. He says, “Mum, I love Dad but I just can’t tolerate him!” I understand his point of view; after all, he is only 19 and his dad is nearly 78. On the shy side of 50, I am in the middle of this all the time so, when Ants comes home – and I do this as much as possible – I leave Ming with him while I go to the toilet to cry. No, not self-pity – just so hard to remember how good it once was and how bad it is now.

I miss all of our wonderful yesterdays just as much as Anthony does. But Ming doesn’t remember and he has no recollection of Anthony ever being well. Every day, lately, he has asked me for a hug and every day I have given him a hug, even after our ferocious arguments, about the car accident, about many things….

Sometimes it is hard to be positive but I have enormous faith in both Ants and Ming and I think that is reciprocated to me. I hope so.




I had a dream last night that someone I knew (it wasn’t clear in the dream who exactly he was), took me to a holiday house somewhere near the sea. It was a really shabby old house and I felt a bit reluctant to go in but I did anyway because I didn’t want to hurt his feelings. Then, once I was inside, the door shut with a clang, and I knew immediately that I was doomed because a hanging rope was already in place for me and the someone-I-knew became a cackling stranger who was going to hurt me before killing me. The terror I felt within that dream woke me up, and I entered the day in a daze of perspiring relief that it was just a nightmare.

Have I read too many books, seen too many movies, thought too many thoughts, felt too many emotions? Yes, probably, but this was the most frightening nightmare I have ever had. Of course this nightmare is not hard to interpret at all I guess – a bunch of mixed emotions following trauma; ongoing anxiety for all those affected by trauma; shame, guilt and embarrassment over the stupid things I’ve said and done since the trauma; and a momentary wish that I would die.

The nightmare has made me see much better what it must be like for Anthony when he experiences the night terrors and and hallucinations of his PDD. If I can experience such a vivid nightmare whilst being physically healthy, and wake up with my face covered in the sweat of terror, then what is he going through?


Parkinson’s disease dementia and night terrors

I have just gotten off the phone with Anthony for the third time in the last half hour. He is terrified and this is happening more and more often at around the same time of night. Tonight he thinks several people are trying to tie him up, that his house is being rummaged and wrecked, and that I am part of a conspiracy to hurt him. Ming and I have both talked to him and I have also rung the nurse in charge to tell her how distressed he is and that he is confused. She said they had tried to put him to bed (sometimes it takes two or three people) but he fought them all off. I told her he didn’t know what was going on and that we were seeing the doctor tomorrow to get emergency medication for this kind of hallucinatory agitation.

Our farm is a half hour drive away and I feel like I should sell up and buy a unit near the nursing lodge so I can be closer for these night terrors because for him to be this frightened is unbearable for all of us. I know/hope that in the short time it has taken to write this post, he will most probably be in bed and nearly asleep because in the end Ming and I managed to calm him down a bit – very hard to do over the phone.

The prolonged emotional agony of this disease, for all three of us, is like treading water in a strange and unfamiliarly large pool of murky water, and can change within the space of an hour. Earlier, when I rang Ants, he was fine and lucid and gorgeous. His words don’t come out very well any more so I was shocked by tonight’s frantic eloquence and his absolute terror. My feelings of helplessness are like jagged jigsaw pieces accidentally placed in the wrong box – futilely useless.

I love him so much.


Are you asleep yet?

Are you asleep yet, my beautiful husband?

Midnight approaches me with dark, unfamiliar claws, so I go outside to find some moonlight but it is pitch black out there and, when I can’t find the moon, I race back inside frightened.

The dogs are barking at a moonless sky but they will soon settle.

Are you asleep yet, my beautiful husband?

You said the other day that you just wanted to sleep wth me but you have forgotten that we have not slept in the same bed since the evening when you could no longer reach the height of the bed and I wasn’t strong enough to lift you into it, and we had to put you into the smaller, lower bed in what we always called the spare room.

I know.

I know you have forgotten those years of tortured, sleepless nights for both of us -, me in the big bedroom, you in the spare room but calling me, calling me, knocking on the wall with your walking stick until, finally I began to sleep in the other small, low bed in the spare room, so that I could help you during those moonful and moonless nights – to pee, to turn over, to be warmer, to be cooler, to get your knees inside the covers, to sleep….

Your dreams were terrifying and you would yell out in your sleepless sleep and I would lie in my bed next to yours hoping it would stop.

Is that what is happening now? Are you still hallucinating about the girl with the bleeding eye, the mob who are chainsawing all of your palm trees to death, the calves on top of the television, the phantoms in the dairy?

The peacocks are crying, crying, crying and their sound is a haunting lullaby.

Are you asleep yet, my beautiful husband?

Please say yes. All you have to do is whisper it and I will hear you, I will hear you.