jmgoyder

wings and things

Dementia dialogues

I started writing these on Facebook but am now wondering if I should retrieve these little conversations for the blog. Anthony is beginning to lose his ability to speak, but the other day he whispered:

Anthony: You are so big and strong, Jules.

Me: Are you calling me fat?

Anthony: Meaty.

Me: How DARE you!

Anthony: I am small and weak now, Jules.

Me: No, Ants, NO! Do you want some of my mother’s Christmas cake?

I wish now that I had written down every single word Anthony spoke in the prelude to this impending silence. He keeps trying to speak, but he seems to have lost the ability to speak. Ming saw his father today and came home to tell me he was out-of-it.

Tomorrow, I will go in and try to comfort him. I think Ants will live for a long time so I have to figure out how to cope.

 

 

 

 

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Paranoia

At nearly 80, Anthony’s Parkinson’s symptoms have reached a new dimension. He is uneasy with certain people/animals/things: sometimes it is a new carer; sometimes it is with the unruliness of a rogue calf that he remembers naming ‘Reject’; mostly it is to do with his slightly younger brother.

Advanced Parkinson’s disease – accompanied by dementia, and the medications -often leads to delusions, paranoia, hallucinations, nightmares. I can still remember Ants yelling in his sleep in the night-years prior to his admittance to the nursing home four year ago.

I have tried, tactfully, personally, and publicly, to stop all visits to Anthony from the younger brother. These visit aren’t often anyway but, apart from being awkward, they always leave Ants with anxiety.

His nearly 80-year-old perspective, his paranoia, his tolerance …. Bravo, Ants.

 

 

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Once upon a time 6

During the many years in which the dairy farmer kept the young girl at arm’s length with brotherly bear-hugs, she somehow managed to finish her nursing studies and then an arts degree.

She had lots of adventures, jobs, friends – even boyfriends – all of which she would tell the dairy farmer about, much to his amusement. She would turn up at the dairy farm unexpectedly and be greeted by his yell of welcome … “JULES!”

The dairy farmer had been swept into a convenient relationship with a woman more his age, a situation that frequently broke the young girl’s platonic stance into slivers of absolute misery. Twice she bumped into the dairy farmer’s ‘girlfriend’ as the ‘girlfriend’ was leaving to go back to the city. These awkward situations were tempered by the guffaws the young girl and the dairy farmer shared in the wake of the departure of the ‘girlfriend’.

It was at about the time the young girl embarked on her postgraduate studies that the dairy farmer finally realised that she was now a young woman; that the age difference was now diminished by time. He let the ‘girlfriend’ go and rang the young woman, asking for a date.

 

 

 

 

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A marriage proposal!

After a couple of days of intense sleepiness, Ants was wide awake and alert today due to a visit from some favourite family members. It was magic!

Later, when it was just Ants and me, he mumbled something resembling “marriageable” and this was our conversation:

Me: What do you mean by marriageable?

Anthony: Well you know….

Me: So do you want to get married?

Anthony: Yes.

Me: But we ARE married!

[At this point Ants gave me one of his half-smiles]

Anthony: Yes, I know that.

Me: So do you want get married again?

Anthony: Not sure about the hundreds.

Me: Hundreds of what?

Anthony: Cameras.

Me: What? [I show him the TV remote]

Anthony: Yes, that’s it … for the wedding … hundreds ….

Me: So let me get this right: you want another wedding?

Anthony: Well, I have thought of it from time to time.

[So anyway I cracked up laughing at this typically Anthonyesque punch-line which of course got him smiling too.]

Me: I am not going through all of that rigmarole again, Ants – I hate wearing a skirt!

Okay, so recently I have begun to get a bit lazy with my visits to the nursing home to see Ants and other residents who I have become fond of. But, even a single day’s reprieve takes its toll in terms of guilt. Yes, I can do my own thing and not go into town, and be fine with that. But, after two days, it’s a bit like a ‘cold turkey’ situation. I miss Ants too much; I ring up when I can’t come in, to make sure he is okay. Most of the carers know now to tell him I will be in later.

In the past, Ants and I never had a hand-holding, smoochie-whoochie relationship; we were always quite restrained. Now, he holds my hand tightly (and the other day when he was unwakeable, he gripped my mothers’ hand when he was asleep – yes, I am a teensy bit jealous haha!)

Of course I will marry him again but only in a let’s pretend way. Why do I visit this man of mine so often, despite his illnesses? Because I love the way he loves me and vice-versa; pretty simple really.

 

 

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Once upon at time 5

During the two years that the young girl worked for the dairy farmer’s mother, she learned how to cook, and salmon mornay was a favourite dish. Melting the butter, whisking in the flour with a fork, adding the milk, getting the bones out of the tinned salmon … it was all rather magical for the young girl.

Eventually, she became quite adventurous in the kitchen and one afternoon, while the dairy farmer’s mother was having her afternoon nap, she cooked fish cakes for their dinner. It was the first time she had cooked anything without the dairy farmer’s mother’s supervision and she was very excited as she followed the instructions of a recipe book found in a secret drawer in the kitchen table.

It was a disaster! The fish cakes were thin and charcoaly instead of being plump and crispy. The dairy farmer didn’t say anything as his mother rose from her chair and declared that the meal was “DIABOLICAL!”

The young girl fled to the back veranda bathroom to cry out her humiliation, the dairy farmer put his mother to bed, and that was that … until the young girl accidentally allowed the simmering grapefruit marmalade to boil over the pot and into the precious Aga. But that’s another story.

Note: Not everything is funny in retrospect, but a lot is! I haven’t lit the Aga for the four years since Ants has been in the nursing home, but it is, nevertheless, a constant reminder of the various mishappinesses of the beginning of our relationship. I reminded Ants today and he gave me his slow half-smile: gold!

 

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Dead or alive?

The other day, Anthony and I had the oddest conversation (in a black humour kind of way). To give it a bit of context, “Eric” died over two years ago; and the ‘house’ Ants refers to is the nursing home. Oh, and another thing: when I thought Ants didn’t remember that “Eric” had died, I presented to him that “Eric” wasn’t very well. I did this because I didn’t want Ants to experience the shock of this again….

Anthony: Is Eric in this house?

Me: No, I don’t think so.

Anthony: So where is he?

Me: Well, he hasn’t been very well lately.

Anthony: Is he okay?

Me: Not really, but he might get better, Ants.

Anthony: But he’s dead, Jules!

PAUSE

Me: So, if you already know he’s dead, why are you asking me if he is in this house? Are we all in heaven now? You are doing my head in!

Anthony: Settle down – I was just wondering.

These kinds of conversations, whispered now, sometimes quickly, sometimes over a whole afternoon, absolutely fascinate me. I realise that sounds awful, but I am so glad now that I have documented these years in this blog.

My recent posts about how my beautiful husband was so mistreated by his closest family; how he is now construed as near death; and the fact that some visits cause him distress … all of this makes me want to tell the perpetrators to please stay away.

But to kinder friends and family, visits are welcome. Anthony can’t speak very well any more but he is still on-the-ball. I spent the afternoon with him today and he told me (as usual) that my hair needed some attention!

Anthony is much more alive than dead.

 

 

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Sea change!

I am going to the seaside for a couple of days – yeah!

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Moments

Today, as I fed Anthony his lunch, he took my hot hand into his cold hand, and kissed it over and over again until I laughed hysterically.

Anthony: Shhhhh! You are so loud!
Me: I was always softly spoken until I met you!
Anthony: Shhhhh!
Me: Are you ready for your next mouthful? OMG you are like a starving dog!
Anthony: I’m hungry.

Anyway, after I fed him his lunch (he seems to have forgotten how to use cutlery – normal in cases of PDD) I got my mother’s amazing Christmas cake out of the cupboard and he pretty much vacuumed it all up!

Lately I have become a bit haphazard with visiting Ants. For example, when he is in sleep-mode, I don’t stay very long; but if he is in wide-awake mode, I stay. It’s a kind of loose arrangement whereby I try to spend at least a few hours per day with him. I should probably turn this into a more regular, regulated routine, but, since I stopped working at the university (and that is a few years ago now), I have lost any sense of daily routine. I suppose I have just been kind of going with the unpredictable flow of Anthony’s PDD.

When I take a day off from seeing Ants, I simply summon Ming or Meg to do so.

Almost every time I enter Anthony’s room, he looks at me and says: “How did you find me?”

Almost every time I leave Anthony’s room, he asks: “You won’t forget where I am?”

This afternoon, he whispered something a bit more poignant: “Jules, don’t forget about me” and I reassured him, of course!

His verbal antics aren’t so acrobatic anymore; his sarcasm is subdued, but the way Anthony stares at photos of Ming and me and him – especially the ones in which Ants is still healthy, I am young, and Ming is a little child – are particularly moving.

Now that Ming has converted a couple of videos into dvds (of wedding and baby Ming), I can see clearly how this nearly 40-year-old relationship has impacted on all of us in various ways.

And this is probably the moment in which I begin to cry (unless I find a good movie).

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Once upon a time 2

As the young girl grew into a young woman, she and the dairy farmer maintained a close friendship. Her nursing student friends would casually dribble phrases like “father figure” and “big brother” but she would recoil from these suggestions, her cheeks crimson with embarrassment.

Her grief at losing her father was relentless; it stormed into her dreams so vividly that she began writing clumsy poetry about sharks and salvation. On her days off, she would travel home to the countryside, to see her mother. On her way back to the city, she would visit the dairy farmer and his younger brother’s family, who shared the farm.

The younger brother’s family consisted of a wife and four children, all startlingly blonde. The eldest daughter was only a few years younger than she was. The second eldest daughter had never forgotten the day she and the young girl had first met over a mixing bowl in the dairy farmer’s kitchen. A nine-year-old at the time, she had taken great pleasure in instructing the young girl in cake-making.

And outside, in the paddocks, the dairy farmer and his brother could easily be spotted via the bright white light of the little boys’ hair. The young girl would stand at the window with the dairy farmer’s mother and observe the scene, smiling when the children’s giggles filled the hot summer air and wafted into the house.

The young girl didn’t just fall in love with the dairy farmer; she fell in love with his whole family! She became especially fond of the dairy farmer’s youngest brother’s wife, a tall, shy woman who she looked up to. This fondness was reciprocated when the young girl was asked to become a godparent to the littlest of the blonde children.

‘In the meantime’ became a constant in the young woman’s absolute certainty that the dairy farmer was the one and only person she would ever marry. Her certainty matched his uncertainty in equal amounts:

Him: I’m too old for you.
Her: I don’t care.
Him: You are too beautiful; find a younger guy. It wouldn’t be fair on you.

Her: Okay then.

Those years threw snakes into the sky and plunged crows underground, but they also carpetted a future path of moss. Okay, too many mixed metaphors, sorry. They saw each others’ feet and both exclaimed ‘yuck!’

PS. I need to give names to these characters.

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Pea and ham soup is not photogenic

That’s all I have to say!

ps. The extra ingredient is another ham hock, so it kind of changes into ham and pea soup. But it still looks like muck ha!

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