jmgoyder

wings and things

Bright eyes!

I feel compelled to record these updates on Anthony’s health, so that I will remember in the future. The unpredictability of his daily condition is just that – unpredictable. After days of silence and sleepiness, today his eyes were wide open (one of the many symptoms of PD is not blinking, so this makes his eyes very wide!)

Me: You look like an owl!
Anthony: I …
Me: Clear your throat – c’mon, cough!
Anthony: Coughing.
Me: So what did you want to say?
Anthony: Where is your mother?

Okay, so a little background information for those who don’t know. My mother is 81 and fighting fit despite numerous health challenges (cancer, broken hip, pelvis, wrist). She lives independently in a town not far from here and she is the epitome of maternal/grand-maternal etc.

The fact that she visits Ants so often – around twice each week and more if I need a break – is testament to her amazing love for me, her only daughter.

Today, she and I joked with Ants, and his eyes lit up several times, with mirth and affection and, of course, confusion.

Thanks, Mama!

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Vacuuming

On the eve of Ming’s 22nd birthday I asked him to vacuum the house.

I had already given him a pre-birthday present of some money, but told him that he would only get the rest if he vacuumed the house.

He grinned, pointed out that the vacuum cleaner needed a new bag, asked me if I remembered how to change the bag, then tested my memory of how to change the bag. I have no idea why I have a reluctance to change the bag; Ants always did that, then Ming. But, in my defence, I am the one who does most of the vacuuming.

Well, having passed the ‘change-the-vacuum-bag’ examination, Ming dismissed me to my newly air-conditioned writing room/office, still grinning (him, not me) and I waited with bated breath for the sound of the vacuum.

I didn’t expect the sound to be so loud. Anthony was always a quiet, careful, gentle vacuumer; he didn’t want to upset the skirting boards. Ming, on the other hand, is a rather violent vacuumer. The BANG AND CRASH sounds were a little alarming so I decided to stay put in the hope that he would forget about this room where I was hiding under my desk.

Finally the sounds of mad vacuuming ceased. The silence was so abrupt that I wondered if the vacuum cleaner was all right. After a little bit more silence I realised that I should have been wondering about Ming.

I emerged from underneath my desk just as Ming entered my writing room. A great big grinning presence.

Ming: Well, I’ve cleaned your house!
Me: OMG that is exactly what Ants said after vacuuming! Every time he did anything domestic, he would make it known that he had done if for me, and I would argue that it was also his house.

I can’t wait to tell this story to Ants tomorrow. I know he will remember his obsession with vacuuming and Electrolux. And I know he will smile at Ming’s vacuuming efforts.

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Whispers

Anthony’s voice has become so soft, he is hardly audible now. How did this happen so fast? One minute I am jotting down his brilliantly cryptic phrases, and the next he is unable to utter a single word.

Parkinson’s disease (in all its variations) has such a conglomeration of symptoms, the tremor symptom being just one, that it took years to figure out what the hell was wrong with Anthony. Understandably, perhaps, I just thought he was getting old really fast.

As Ming grew from baby to child to teenager, Anthony’s usually loud voice gradually lost its point, its force, its boom.

So, from now on, I will be listening to his whispers more intently than usual. He will have to check with me re the placement of every single comma!

The recent rumour that Ants was near death absolutely infuriated me!

Whispers….

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Death-defying

Anthony has lived, breathed and survived so many diseases now that it is gobsmacking that he is still alive and (almost) pain-free. He is like some sort of super-hero in the ‘high care’ section of the nursing home, and very popular with the staff because, after nearly four years there, he still has a twinkle in his eye.

Of course, sometimes he seems semi-comatose; other times, he is alert. It’s the same with verbal cognition: sometimes he is unable even to say a single word; other times he is vociferous. I haven’t seen him walk for awhile, but maybe he does that in the morning and I usually get there at lunch-time or in the afternoon.

Most of Anthony’s regular visitors – me, my fantastic mother, Ming, friends, family, and volunteers – actually speak to him, reminisce with him and this is wonderful. And the staff are fantastically interactive with him to the point of flirtatiousness. Be careful, girls – he is mine!

The rumour, spread by a family member, that Ants was near death, was disturbing to say the least, but, once I rang him, he admitted his mistake. It didn’t seem to occur to him that his rumour might have upset Ming and me.

This morning, I received a phone-call from a neighbour who hadn’t seen Ants for awhile and he was shocked at Anthony’s confusion and appearance. I reassured him that Ants was always a bit dishevelled in the morning. Later on today, my mother rang me to say she was with Ants and she gave me her phone so I could speak to him.

Anthony: Where are you?
Me: Ming and I are fixing a fence.
Anthony: At Bythorne?
Me: Yes.

Please don’t die, Ants. Not yet.

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Hello!

I am interrupting my blog break with a post because of an incident that has shaken me.

Two days ago, Anthony’s brother, J, a couple of lovely nephews, and Ants’ oldest friend, all convened at the nursing home. I didn’t realise at first that this had been arranged by J.- a fantastic gesture except that he forgot to invite Ming and me.

Nevertheless, I was delighted, despite the fact that J’s instructions were to have Anthony outside. The carers couldn’t lift Ants out of his armchair and they were about to get the hoist when the two nephews managed to get him into the wheelchair. I decided then that I would have to go with the flow so I wheeled Ants outside.

He was cold, uncomfortable, un-talked to (but talked about rather wonderfully by the nephews and friend); I sat right next to him and shared some champagne with him until it became obvious that he needed to get back to his room.

I came home, still delighted. It hadn’t been a perfect afternoon but it was better than nothing and I was very grateful for the presence of P. the nephew who visits Ants every weekend. He is so loyal and kind; he is a gift to Ants, Ming and me because of his sincerity and his love for Anthony.

The next day, another nephew (one who regularly visits Ants despite living 200 kms away), rang me to ask what was going on. I didn’t understand the question so he said that J. had rung various family members to come for drinks at the nursing home to say goodbye. I told him that J. and a couple of people had turned up but I hadn’t known why.

Apparently J. had decided to tell all of the family (except Ming and me) that Anthony was at death’s door. When I rang and confronted him, he explained that he just wanted to say goodbye.

“Try saying hello,” I said.

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Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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The magic of make-believe

One of the most wonderful aspects of being a small child is the magic of ‘make-believe’ – the power of the young imagination to create anything out of anything and to see the world through the lens of magic.

The first time I climbed high up into a tree as a child, the first time Ming saw fog (he was 4), were moments of intense magic – make-believe moments

Anthony is 23 years older than I am so I have no way of knowing what his childhood make-believe moments were. But, as his Parkinson’s disease dementia progresses, I am becoming more amenable to his visual, auditory and tactile hallucinations. For example, he often sees dogs or calves in his nursing home room and wants me to shoo them into another ‘paddock’; and, yesterday, he asked me who the small boy was, in the corner of the room. This small boy often features in our faltering conversations.

Anthony: Just over there.
Me: Is it Ming?
Anthony: No, of course it isn’t Ming!
Me: So who is it?
Anthony: I don’t know.
Me: So do you like this kid?
Anthony: I think so.
Me: Okay.

I came home last night in a bit of a quandary. Do I tell Ants he is hallucinating and there isn’t a kid in his room? Why is this hallucinated little boy such a constant presence in Anthony’s room? Who is this little boy, if it isn’t Ming?

Maybe the older Anthony has make-believed himself into his childhood self? I don’t know if this is magic or tragic, but I am trying very hard to figure it out and go with the flow etc.

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Today

I’ll write more about today tomorrow but, in the meantime, I am savouring today.

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Today.

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Sigh of relief

I have mentioned Dina before (my decluttering friend) and, more recently, Dan (my vegetable garden artist). Well, yesterday they both happened to be here at the same time. Dina was here in the house with me, helping me with a huge pile of filing, and Dan was outside, replenishing the crop of vegetables that had been eaten by rabbits.

The other people who were here were the guys (Eric and Aaron) who I’d employed to rabbit-proof the fence around the vegetable garden and they are doing a marvellous job! I think you have to be Australian to realise what a curse to crops rabbits are. Anyway these guys have dug trenches deep enough to put steel mesh underneath the ground to stop the scoundrels from getting in and eating my carrots etc.

The ‘sigh of relief’ title of this post is just to do with knowing that these are people I can call on, professionally and, sometimes, personally.

And Chris, my computer guru, has helped me solve my cursor acrobatics since getting the new modem – sigh. I have, once again, found it impossible (except via phone) to access the internet.

Dina visited Anthony the other day and helped him with his lunch. He asked for me but she explained that she was there instead of me (this is what my mother does. Then he said to her, as if he were in a restaurant,

“This is only the second time I have been here.”

When Dina told me this I had such a sad chuckle because Anthony has now been in the nursing home for nearly four years.

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3am

Sometimes I get up in the early hours, usually around 3am, and I watch some television, or reminisce myself back into sleep mode.

It is impossible to express how much I miss Anthony being here, in this house, on this/his farm; ‘longing’ is the best way I can describe it.

Often, my heart is tugged awake by this longing and sometimes I feel absolutely desperate to see him.

But sometimes I just don’t bother; I press my face into the pillows and try to avoid the day; I swallow the guilt with a glass of milk; I tell myself that he is in good hands; I sob.

Longing is a weird emotion; its nostalgia cuts into the throat of love, slicing page after page into new, fresh coherent sentences.

It is 3am. I am 15 kms away and wide awake.

I love you, Anthony.

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