Parkinson’s disease dementia | jmgoyder

“The Gift of Alzheimer’s”

by jmgoyder

This is the title of a book I am reading, written by Maggie La Tourelle. Maggie tells the story of the journey she and her mother share in which her mother’s Alzheimer’s actually enhances their relationship.

What I really like about this book is the way it de-tragifies dementia; gives fantastic examples of dialogues between kin; and even explores the spiritual possibilities beyond death.

Maggie’s conversations with her mother remind me so much of my conversations with Anthony that it has made me quite emotional (especially at 3am!) Their story is unlike ours in many ways but there are some fascinating parallels.

http://maggielatourelle.com

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3am

by jmgoyder

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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Nonsense

by jmgoyder

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
don’t
make
sense….

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.

PAUSE

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.

PAUSE

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!

PAUSE

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.

PAUSE

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.

PAUSE

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.

PAUSE

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.

PAUSE

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!

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Another day with Anthony

by jmgoyder

After the fright of the other day when Ants was unconscious for so many hours (much longer than usual), I now realise that my being there every day is important. (Confession: I have been taking ‘days off’ here and there recently).

The first interesting thing about this is that, according to staff, relatives, and visitors, if I am not there, Anthony asks for me and is sometimes fretful.

The second interesting thing about this is the whole time warp thing: i.e. I rush in to see Ants on my way to getting the car serviced, seeing whether we have won lotto, buying chick starter etc. so it’s a very brief visit. And he always knows that I will be back soon, even when I don’t come back that day/night. Five minutes can equate to-and-fro with five hours – or vice versa.

The third interesting thing about this is Anthony’s daily mention of Ming. He never does this in a needy way; he is just always very curious and loves seeing photos of Ming, including Ming’s latest Halloween antics/costume at the restaurant where he works. These photos (as well as the photos of Ming on the walls of Anthony’s nursing home room) are always a buzz – “There he is!” Anthony will sometimes say.

When I told Ming about the frightening day, I cried because I was scared that we might lose Anthony suddenly (which, of course, we will). In telling Ming about my day with Anthony, I realised, and saw, how alike they are: generous, sensitive, gregarious, easy-going, beautiful.

Another day with Anthony…
… enhanced by the fact of Ming.

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Turning corners

by jmgoyder

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

Yes, that is Ming on the left in the above photo. I was feeling a bit blah yesterday morning but, when I switched on my newly-switched-on computer, and the internet rushed into my laptop, this photo was the first I saw.

Okay so it took me a few seconds to realise that it was Ming! Other photos followed and I was so overtaken by laughter that the whole blah thing disappeared. I got showered and dressed and drove into town for lunch with this beautiful nurse.

Once I figure out how to save the photos I took of Ming in his nurse’s outfit, as he and I lunched together during his break, I will post them. It was the most glorious hour of halloween hilarity.

And then I went to the nursing home to see Anthony. I arrived at 1pm and left at about 4.30pm. For these hours I was unable to wake him up no matter how much I shook his shoulders, squeezed his hands, shouted (as quietly as I could) ‘Wake up, Ants!’ His nephew visited, a friend visited, the nurse-in-charge came in and checked his blood pressure etc. and reassured me that all was well. I visited the dementia wing a couple of times, showed several staff and residents the photos of Ming, laughed and joked, in the hope that when I returned to Anthony’s room he would be awake. He wasn’t.

The possibility that Anthony might die during – or soon after – one of these TIAs (which seem to be occurring more often), is a corner I have been hesitant to turn into. I was calm yesterday afternoon, then terrified, then resigned. When I got home, Ming was here, and listened to my tearful fears in the same way I listen to his; after all, we both love Anthony.

It is entirely possible that Anthony will live for many more years; it is equally possible that he will die soon. I am not ready for the latter, despite many attempts to BE ready, and I cannot imagine my life without Anthony in it. His room in the nursing home, the staff who have become such wonderful friends, my arm around his shoulder, our long afternoons watching television, bantering, just being together, sometimes reminiscing, sometimes eating and drinking, laughing, looking at photos, doing paperwork, engaging with staff, residents, friends, relatives, visitors … his room has become my refuge, my home.

Ah, but I do have another home – a place where I can eat, drink, write, relax. I can be one of those trendy people who drink short blacks whilst writing articles about the meaning of life and death OR the proud mother of the waiter at Corners on King.

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“Handsome man!”

by jmgoyder

One of the staff at the nursing home always makes a point of greeting Anthony with “Handsome man!” Her wide, glorious smile almost always elicits his own smile and today that was the case.

The simplicity and constancy of this gesture is extremely comforting for me too, because I know she, and so many other staff, care about him. Genuinely.

A recent conversation:

Anthony: They love you. They always ask for you – they say, ‘Where is Julie? Where is your wife?’

Me: No, it’s you they love, not me, silly!

Anthony: No, it’s you! They always want a Julie in the room.

This afternoon, Anthony was extremely lucid until around 4.30pm when he kept ‘seeing’ me on his right hand side, when I was on the left, and vice versa.

Anthony: Where is Julie?

Me: You mean me?

Anthony: Oh there you are!

And that was when she came back – this beautiful staff member – and said those magic words:

Handsome man!

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This, that….

by jmgoyder

This,
that….

Well I got back from Perth last week and the first thing I did was to rush to my new beaut vegetable garden and also check the chooks. I fed and watered both with a sense of quiet glee.

The second thing I did was to go inside and log on. When nothing happened I didn’t panic since all the green lights were indicating merrily that the internet wasn’t too far away.

Six hours later, having spoken to six different technical support people, all of whom were amazingly patient, kind and positive (with the exception of one woman whose sighs, when I didn’t understand her click34xcableetc instructions, became thunderous on loudspeaker) were confident.

At one point, during this ungleeful, longwinded experience, I rang Ming who said that when he got home he’d sort it out in a jiffy. Well he tried, and even spoke to other technical support people, to no avail.

The Ming then said, with great compassion and a generous hug, “Maybe you’re just not intelligent enough, Mum….?”

I let his observation linger for the ten days during which I had no internet except via my phone. When I began to get the 5s mixed us with the Ss, I gave up.

Anyway, yesterday the replacement modem arrived at the post office and Ming picked it up, brought it home, connected it and voila!

So what am I supposed to do now? I can’t possibly answer all of the zillions of emails and comments and facebooky stuff; I can’t possibly catch up on ten days of my blog friends’ blogs; I can’t even catch up with what I was going to do before I lost the internet because my blog kind of reminded me of what to do.

I survived my ten day blip of no internet, but the person most affected by my off-the-internet-radar status was my beautiful mother. Meg and I have a strong internet relationship via email and Facebook, but she is more attentive to messages than I am, so, when I lost the internet, she was the first to miss me.

And today is her birthday. She is 81, looks 61 and acts like 21. So today Meg came to the farm to see the vegetable garden then we went to a local winery for lunch. The secret surprise was that Ming and A. would join us and that was a fantastic thing!

It’s great to be blogging again. That internet blip taught me something really profound: I need the internet!

One of the hardest things for me now is having fun – the guilt of it. Lunches with friends, learning how to garden with new friends, figuring out the future, altering and/or discarding things in this old house, renewing ….

This,
that,
and the other….

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The suffering conundrum

by jmgoyder

I just don’t get it. Why does one person cop multiple illnesses? And why does this seem to happen to the beautiful people?

Later this week I will be travelling to Perth to meet my friend at the airport, after which we will spend two luxurious nights at a resort. During the days, I will take my friend to her medical appointments; in the evenings we will sip wine, eat pizza, and reminisce.

She was the first kid to say hello to me on the bus to school after my family moved from PNG to Australia. Since then, we have had years of little contact due to busyness, geography etc. but, more recently, have reconnected.

‘How is it possible for you to still laugh?’ I asked her on the phone tonight, to which she replied with her laugh.

My friend suffers severe eye conditions and an unhealed broken foot and yet she can still maintain laughter within her suffering. How does she do this?

I haven’t mentioned her name because she is very private but I so wish I could salute her publicly because she is amazingly philosophical and pragmatic.

And maybe she and I will make a bit of sense out of the suffering conundrum when we see each other in a couple of days. I can’t wait!

Sorry about that image. Prince always seems to want to give me the back view. Here is a better view.

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Full of beans!

by jmgoyder

A long lost dream is coming true via a tall man with red hair, named Dan, whose business is called Full of Beans. Thanks to him, my vegetable garden is being created! If it weren’t for being invited to join the gardening group I would never have known about him, so I am very grateful. Ironically, I can’t attend tomorrow’s get-together because Dan is coming back to do the planting and I want to learn.

One of the things that really appeals to me about Full of Beans is that it provides an ongoing maintenance service for gardening novices like me.

Okay, so gardening friends far and wide may see this as a kind of cheating on my part (employing someone to make me a vegetable garden) but oh well. I am already crazy about what Dan has begun to create and can hardly contain my excitement.

Anthony was an avid gardener, despite not having much time, with milking the cows and looking after his mother. Nevertheless almost everything he planted, over 50 years ago, still survives. But he was never the least bit interested in growing vegetables. A couple of years into our marriage, I asked for a vegetable garden but he said there was no room. I argued that there was plenty of room (5 acres around the house!) to no avail.

And, as Ming grew up into an adolescent, he formed the same opinion. It was just a small dream of mine but neither of them would have a bar of it. That’s okay; they just weren’t interested and maybe didn’t realise how much I wanted the vegetable garden. I couldn’t do it by myself so one year my brother came out and dug me a patch and every single gigantic zucchini gave me a thrill. But that went by the wayside in the face of Anthony’s mysterious deterioration in health (we didn’t know about his Parkinson’s then) and the fact that I was working full-time that year.

Now that Anthony is no longer cognisant of our shared reality; now that Ming is in a fantastic relationship; now that I am learning how to be completely alone, a vegetable garden seems profound.

A long lost dream is coming true via a tall man with red hair, named Dan, whose business is called Full of Beans.

http://www.fullofbeans.com.au

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An argument about Anthony’s smile

by jmgoyder

You know how I’ve been saying how wonderful it is to see Anthony smiling again, and that I’ve been crediting myself with having made a huge effort to get that smile back? Well, Ming disagrees.

Today was a day off work for Ming so he went to see Anthony and I had a day at home. When he got back he told me that he had Anthony laughing!

Ming: Mum, Dad never lost his smile!

Me: You don’t see him as much so you don’t know – anyway you can always make him smile because you’re Ming!

Ming: So can you and so can anybody!

We left it at that; after all there is no point having an argument about a smile. Nevertheless our brief argument got me thinking about Anthony’s Parkinson’s ‘mask’ (the blank, unblinking, slack-jawed expression on his face, typical of PD). And I realised that the only reason I see this more than anyone else does is probably because, when I visit, I am there for hours so I see the fluctuations.

For example, when staff come into Anthony’s room and banter or flirt with him, he smiles; when friends and relatives visit, he smiles; when Ming and I visit, he smiles. So perhaps I should adjust my thinking to the possibility that it has become easier to conjure/coerce that smile? Maybe Anthony’s smile, and even his laugh, was always there, always ready to be there.

Maybe it was my own smile that went missing for so long.

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jmgoyder

wings and things

“The Gift of Alzheimer’s”

3am

Nonsense

Another day with Anthony

Turning corners

“Handsome man!”

This, that….

The suffering conundrum

Full of beans!

An argument about Anthony’s smile

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