jmgoyder

wings and things

Dec 9

Resting

by jmgoyder

I decided today to take another extended blog break. Instead, I want to concentrate on getting previous posts about Anthony’s Parkinson’s disease dementia into the form of a publishable book, or, at least, a series of publishable articles.

Most bloggers can relate to the need for a rest and I have been slackening off for ages, hardly reading anybody’s posts, not responding adequately to comments etc. despite how grateful I am for feedback.

To take a break from blogging will give me a rest from a self-imposed need to share. I think the Dementia Dialogues are important and I will continue to record and write those, but not publicly until next year.

Today, after Ming voiced his typically loud philosophising in Anthony’s nursing home room, Ants whispered “I know exactly what he means” but we were unable to get him to elaborate further.

I briefly jostled with Anthony, pretending to turn our hand-holding into an arm wrestle….

Anthony: Don’t! You might hurt me.

Me: Stop being so ridiculous, Ants – you’re not that delicate!

Anthony: Yes I am.

Me: What happened to the macho machine I married?

And then, without a beat, Anthony said, “He retired”.

So, with Anthony retired, and me taking a rest from blogging, it’s now Ming’s job to keep our story going.

In the meantime, Happy Christmas!

 

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Dec 4

Dementia dilemmas

by jmgoyder

We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.

Anthony: Why?

Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!

Anthony: You’re not so bad yourself.

Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!

Anthony: Well I wouldn’t go that far, Jules.

Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.

But this afternoon, we had a completely different kind of conversation:

Anthony: Okay, let’s go.

Me: Where?

Anthony: I want to go home to see Mum.

Me: But she isn’t there, Ants.

Anthony: Where is she?

Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).

Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]

Me: I think they’ve gone out for lunch.

Anthony: Well we can join them and then go to the farm.

Me [grasping for straws]: But what if the doctor comes?

Anthony: You always do this.

At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.

While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….

Anthony: Hey, hey [squeezing my hand harder]

Me [looking at him in mock annoyance]: What now!

Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?

Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.

The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.

Anthony: Thank you for telling me, Jules.

Me: Are you okay, Ants?

Anthony: Not really.

Me: What can I do?

Anthony: Can you just take me to the farm – my farm?

Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.

Anthony: You always say tomorrow.

Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!

Anthony: But I’m getting better every day. Why don’t you believe me?

Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?

Anthony: Don’t cry, Jules….

It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.

On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.

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Dec 1

Dementia dialogues 12

by jmgoyder

Anthony: How do you always find me? It’s remarkable!

Me: I have a really good map, and a really good memory.

Anthony: You look beautiful.

Me: Wow, thanks, Ants! You look good too.

Anthony: I need to get rid of this moustache.

Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.

Anthony: So what do I have?

Me: Well, you have a lack of moustache I guess….

Anthony: Mmm.

Me: Could we resume this discussion tomorrow?

Anthony: Yes, just bring chocolate.

 

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Nov 20

Agog

by jmgoyder

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Nov 8

Hands on!

by jmgoyder

Today, as I held Anthony’s hand in mine, he kept on bringing my hand slowly up to his mouth, then kissing it. This happened over and over and over again until it became hilarious for both of us.

Me: You are melting my heart, Ants!

Anthony: That’s as it should be.

Me: We never used to hold hands in the old days – it’s kind of weird – and I am getting a bit irritated. Sorry!

Anthony: Your hands are in bad shape. Mine have things on them [pointing to one of his thumbs and a finger where I could see nothing wrong].

Me: Does it hurt?

Anthony: No it’s wonderful.

Me: Oh, okay I think I get it. Well, you’re lucky – one hot day and I have the rotten blisters back [I developed a strange condition a few years back whereby perspiration causes this thing called pompholyx].

Anthony: You need to stop scratching them.

Me: Yeah, but it’s so itchy! Anyway stop telling me what to do. You’re lucky you have such wonderful hands.

Anthony: Yes, I do, don’t I.

Okay, so the above conversation was at around noon, then I met a friend for coffee. I got back to Anthony at around 2pm. The hand holding resumed but the conversation did a bit of a U-turn in the cul-de-sac of Anthony’s dementia. Instead of kissing my hand, he kept removing it from his and placing it very neatly onto the side of my chair.

Me: Why are you rejecting me?

Anthony: It’s in the way. Jules, can you take these off? [He raised his hands, palms-up to me.]

Me: So you want me to take your hands off?

Anthony: Yes!

Me: But why? I can’t remove your hands, even if I wanted to, Ants.

Anthony: They’re in the way.

Me: In the way of what?

Anthony: That boy.

Me: You mean, Ming, our son?

Anthony: Yes, that’s the one. Can he take these [again, offering his hands up]. They could join those two little sheds into one.

Me: I think that’s a fantastic idea, Ants and we should tell Ming as soon as possible. He and I already know what a fantastic farmer you are. Thank you!

Anthony: So when are we going home?

The wish to come/go home has, unfortunately, become a frequent topic of conversation lately, after about a year of Anthony forgetting all about this beautiful farm. I hate the moments of slicing lucidity in which he says to me that he wants to be back at home; I hate bluffing and promising this impossibility; and I hate my deception of course!

Anthony’s immobility, and other issues, make it impossible for me to bring him home, even for a couple of hours. I can’t lift him at all any more; he often requires two carers and a hoist.

He is, however, the most uncomplaining, resilient, beautiful person I will ever know and I am so proud that Ming has these attributes too.

Quite handy!

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Oct 30

Poetry and sentences

by jmgoyder

When a little parrot you have never seen before

trips clumsily over the fragment of a mung bean sprout

you have placed on the balcony ledge

of the resort you have brought your mother to, to celebrate her 82nd birthday,

you hold the rest of the mung bean sprout in the palm of your outstretched hand

and smile when that little parrot takes it and flies away,

its wings flapping once

like a wink.

 

That sentence was too long and I don’t know if I have punctuated it properly for poetry. But I do remember advising my creative writing students to use commas when they felt the need.

 

Ming, Meg and I spent some time together at this wonderful resort and, thanks to Wifi, my mother was able to receive the multiple birthday messages from family and friends. We all thought the little parrot would come back as it seemed so tame. Having taken multiple photos of a similarly tame-seeming kookaburra, it seemed inevitable that the little parrot would return for a photo shoot – ha.

 

I had seen Ants and fed him his lunch on the day I drove us down south to the beautiful resort. My mother and I were supposed to check in at 2pm but I was delayed because Anthony was in ‘agony’ (his unusually dramatic words, whispered to me) due to constipation. Once that the situation was remedied and he was back in his armchair and comfortable, I told him I was taking my mother out for lunch for her birthday.

Anthony: I think I might stay here.

Me: That’s fine, Ants. I’ll see you after the birthday lunch.

48 hours later, my mother and I arrived at the nursing home in time for me to feed Ants his lunch again. He didn’t appear to realise that I had been gone for longer than a day which was a blessing to me.

 

During our time at the resort, my mother and I basked in the luxury of the beautiful view, the wonderful wineries, the gift-shops where I found unusual wine glasses (my latest hobby). My mother found a fantastic onyx ring which absolutely made my day. And we walked through the rather magical gardens – just us the first time, then with Ming who came down laden with three varieties of Bailey’s Irish Cream – his birthday present for Grandma.

 

I saw the kookaburra once more, from a distance.

My mother recollected how much I cried and cried after placing Anthony in the nursing home and I admitted that I didn’t remember this phase. I know I can look back on my blog and re-see that pain but I don’t want to because it is all fine now; Anthony, Ming and I have accepted that it is what it is….

Happy birthday, my beautiful mother – thank you for your support and love for all of us, not just me. I have learned the most important life lessons from you – to be ready for anything and to always, always, get back up from a fall.

And I know that parrot’s address

like a wink….

 

 

 

Alzheimer's Disease; Dementia Animal Anthony blogging death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Western Australia Wings

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Oct 27

An ‘aha’ realisation

by jmgoyder

Today I did some volunteering at another nursing home before going to see Anthony. I told him I had just come from work (I call the volunteering ‘work’ because Anthony’s lifelong concerns about money are still a big part of his psyche).

Anthony: So how much money is in the bank?

Me: Thousands!

Anthony: How many?

Me: (pulling a fictitious figure out of the air) $35,000!

Anthony: That’s not bad.

Me: What do you mean ‘not bad’? My job is making us rich! You should be proud of me!

Anthony: I am, Jules.

Me: Ants, the reason we are so wealthy is due to all of your shares and your hard work. We don’t ever have to worry about money again because you are such a good provider!

Anthony: But did you turn the pump off?

Me: Ming does all of that now.

Anthony: What about the calves?

Me: All safe, tethered and beautiful. You should be proud!

Anthony: I fixed that fence this morning.

Me: I know – thank you. Everything is fine now.

Anthony: But what about Mum?

Me: Ming is with her – she’s fine.

Anthony: Okay.

Me: I have to go back to work now – will you be alright?

This was our conversation at about 4pm today and I used ‘work’ as a way to leave him with the assurance that I would be back soon. As I’ve said before on this blog, telling Anthony that I am going home often distresses him because he wants to come home too – of course!

I have been naming the above such conversations as “Dementia dialogues” and I sometimes worry that this title may be construed as demeaning or patronising to Ants and other people with Dementia. This is certainly not my intention.

As I was leaving, we had this conversation:

Anthony: You don’t have much of a life do you.

Me: What are you talking about, Ants? I have you and Ming – what more do I need?

Anthony: But we’re all split apart.

I was so shocked by the lucid poignancy of this statement that my heart felt like it did a somersault. Anthony said this without a flicker of unhappiness and I remembered how factual he used to be – how pragmatic.

And then, just now, before I began to write this post, I realised that Dementia might affect, and sometimes kill, physical and cognitive memory, but it doesn’t necessarily affect emotional memory.

I told Ming what Anthony said today and he punched his heart softly.

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Oct 26

Dementia dialogues 26

by jmgoyder

Anthony: I saw her in the corridor … earlier….

Me: Who?

Anthony: Julie – it was Julie.

Me: I AM Julie, Ants.

Anthony: Yes … it’s extraordinary.

 

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Oct 21

Dementia Dialogues 21

by jmgoyder

Me: I’m a bit upset about these wrinkles on my cheeks that I’ve just noticed, Ants – see?

Anthony: Yes.

Me: What do you mean by ‘yes’? You’re supposed to say that you can’t see any wrinkles!

Anthony: But I can [and, OMG, he puts a finger into one of the many new little grooves of my left cheek!]

Me: I’m not happy about this, Ants, and, by the way, the only reason you don’t have wrinkles on your face is because the Parkinson’s Disease has made your face expressionless!

Anthony: That was not my intention.

Me: What? What!

Anthony: You look beautiful, Jules.

Me: Okay, but do I have wrinkles?

Anthony: Just the nice flavour.

I tried to laugh without further crinkling my face….

 

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Oct 4

Dementia dialogues 7

by jmgoyder

Me: Why were you so horrible to me yesterday?

Anthony: Because you wouldn’t take me home to see Mum!

Me: I’m sorry, Ants – it’s just that ….

Anthony: And, by the way, Jules – Mum is not dead!

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