jmgoyder

wings and things

Dementia and distress

Until recently, Anthony’s level of distress was due to an entirely rational sense of homesickness. Recently, however, it has been exacerbated by an irrational fear that I no longer love him.

Today he forgot that he saw me yesterday (it’s the first time this has happened), so he was really upset. I had to remind him about yesterday and then he was apologetic for having forgotten.

At this stage of his dementia Anthony can fluctuate between lucid and not lucid in the space of a single sentence. He frequently hallucinates various animals (usually calves), gropes for the right word constantly, and is exhibiting several behaviours that are totally out of character.

I hesitate to say this but I’m beginning to think that full-blown dementia would be better than this limboland. It’s not that any of the above shocks or upsets me too much because I nursed people with dementia for years, so I know what to expect.

The thing that is most distressing for me is Anthony’s distress and the fact that I have never ever known him to be so sad until now. And that is my sad too.

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Taboo

No matter how honest and revealing a person is, either face-to-face or in a blog, there are certain things that are unsayable, secret, too personal.

There have been a couple of incidents at the nursing lodge lately where Anthony has behaved in a way that is disturbingly out-of-character.

The ungentling of my gentle husband’s brain is causing him to do and say things that are horrible. Taboo.

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Let me in!

pea 756
pea 755

Gutsy9 (the 5-month-old peachick I raised inside the house because none of our peahens were interested) is thriving outside now. He sleeps in a pen with the ducks, Zaruma and Tapper, but every morning I find him in the adjacent pen with the turkeys, Bubble and Baby Turkey! Oh well at least he doesn’t venture into the geese pen because Godfrey hates him.

As soon as I open the three pens to let them all free-range for the day, I am met with a cacophony of excited noises and then G9 actually sprints after me to the house and follows me inside.

Until today. Today I decided to say no to him, and tried to explain that his peacock poop is the reason. He wasn’t happy!

Oh and G9 is definitely a boy because our friend, Mike, who raises peas told me so. I’m not as thrilled as Anthony was when Ming was born and he yelled IT’S A BOY!

Secretly I was hoping for a little peahen – ha!

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Mixed emotions

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When I was 12 and struggling with my all-over-the-place thoughts and feelings, and worried that I was abnormal, my mother wisely reassured me that I was simply suffering from mixed emotions and that this was normal for 12-year-olds.

At the time, I found it immensely comforting that there was a name for my ‘problem’ – mixed emotions.

Now, all these years later, it is happening again – that simultaneous sad/happy thing but of course it doesn’t sound very convincing when you decline an invitation to lunch, for instance, by saying, “I can’t today because I am sick with mixed emotions.” A migraine is a much better excuse.

Yesterday afternoon, Anthony was taxied home and the handful of friends I’d invited (he doesn’t cope well with more than a handful) all arrived with food and drinks, and I was filled with happiness. It was a delightful afternoon and resembled the hundreds of delightful afternoons when Ants was well. I used to be amazed at how Ants would never sit down, would constantly replenish half empty glasses, would shout with laughter at his own anecdotes, turn the music up and dance, bear hug me, wink at me, grin at me. The good old days.

Of course now that Ants can’t stand up easily, or wink, or grin, or shout with laughter, or dance, or hug, or even follow an anecdote, let alone tell one, it’s different. Don’t get me wrong – it was still wonderful, but when the taxi arrived to take him back, the sad kind of stole my smile, and our little crowd went from noisy to quiet.

After Ants had gone, the frivolity resumed, but at a lower key for me and, later in the evening, when everyone had gone, I felt such a surge of grief and nostalgia that I had to remind myself to breathe.

Mixed emotions.

(But at least I didn’t injure the taxi driver this time, even though he mistook me for Anthony’s daughter!)

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Empathy requires effort

A few thing have happened lately that have drawn my attention to the notion of empathy – that ability to identify with someone else’s suffering and to feel it too. This is not as easy as sympathy.

Okay the first thing that made me think about empathy was (as blogged previously) Ming’s inability to feel it for Anthony. Then, last night, after Ming got home from his weekend away, he was obviously unconcerned about my asthma until I said, “Why don’t you care?”

“Because I don’t know what it feels like, Mum!” he said. Ïf you want me to care, you have to tell me to; if you want my support, you have to tell me how.”

Food for thought: empathy doesn’t necessarily come naturally.

The second thing that made me think about empathy was a blogpost by a friend whose beautiful daughter died recently after years of suffering. This mother’s grief is raw and almost unbearable to read about, and my sympathy for her is enormous, but what about my empathy?

So I tried to imagine it; I tried to imagine my only child, Ming, dying and dead, but I couldn’t get my imagination to get beyond his dying to his death because it was too hard. I felt so wretched with grief I had to stop my imagination.

Food for thought: Empathy does come naturally to some and I thought I was one of those, but I’m not sure anymore whether it is possible to feel empathy (automatically) for someone who has experienced something that you haven’t.

How can 19-year-old Ming feel empathy for his 77-year-old father? Is it something that needs to be taught?

I wonder.

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Hardening the heart

I’m not sure if this is right or wrong, sensible or nonsensical, normal or not, but sometimes I have to harden my heart in a very deliberate way in order to ‘seize the day’.

We probably all do this to some extent – I’m not sure. All I know is that if Anthony is forlorn, or Ming is angry, or I am wondering/wandering, I seem to be able to harden my heart against itself.

And then I can breathe again.

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Lucky in love

I arranged for Anthony to be wheel-chair taxied home today for the third time this week. We are doing this so often lately that it is becoming the new norm. Anthony arrives here at 2pm and is taxied back to the nursing lodge at 4.30pm.

There have been numerous logistical glitches with this arrangement, but it’s getting smoother.

When Ants arrives, it takes awhile to get him out of the taxi, but once he is on the front veranda, it’s like the good old days – just the two of us.

Today, Ants saw Ming before milking, then we visited his nephew’s family, then we came back home to have a drink before the taxi arrived and, for the first time, Ants accepted he had to go back to the nursing lodge.

We hugged and kissed goodbye but there were no tears from either of us – phew.

Anthony was/is my first and only love. He continues to make my heart beat faster. I am so lucky!

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Anthony adventures

It occurred to me today, while Anthony was home for the afternoon, that, instead of getting all anxious about his PDD symptoms, I/we could embrace this phase as a kind of adventure.

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Home is where the heart is

I had planned to get Anthony home today, then decided to wait until the weekend so I could also invite some friends to see him. So I left a message with the nursing staff this morning, then rather guiltily rang him this evening. I needn’t have worried because Anthony thought he was home anyway. This is how our rather strange conversation unfolded:

Anthony: Jules, I’m at Bythorne [that’s the name of our farm]
Me: Are you?
Anthony: Yes, where are you?
Me: Well I thought I was at Bythorne.
Anthony: That’s okay then.
Me: Why do you think you’re at Bythorne, or are you kidding?
Anthony: I don’t just think I’m at Bythorne; I AM at Bythorne.
Me: I thought you were at the nursing lodge.
Anthony: No, I’m at Bythorne! When are you coming home?
Me: I won’t be long.
Anthony: That’s good. I miss you.
Me: Well you sound pretty happy.
Anthony: I am! I love you, Jules.
Me: I love you Ants.

The dementia that is part of Anthony’s Parkinson’s Disease always kicks in after sundown (I blogged about ‘sundowner syndrome once before). But this is the first time he has thought he was at home.

I felt a surge of joy about this because he sounded so happy, but it was a bit surreal.

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From the sublime to the ridiculous!

Yesterday I blogged about two rather serious things – one happy and one sad. Today, I feel like a bit of humour so I will tell you about something that happened just before Christmas.

The phone rang and I told Ming to take a message and, after a strangely long conversation with someone who was obviously unknown to Ming, he made a few notes, said goodbye and then came to tell me who it was.

“Mum, that was an old friend of Dad’s and she wants to come down from Perth with another old friend of Dad’s. They’ve heard he is in the nursing lodge and they want to see him.”

“Oh, that’s fantastic”, I said. “What are their names?”

When Ming told me I got the giggles. “Those are two of his ex-girlfriends, Ming!”

Ming was suitably shocked and wondered why I was giggling.

“It’s okay, they were well before my time. I’ve heard other people talk about them over the years but these two women would be around Dad’s age.”

“So you don’t mind?” Ming asked. “Aren’t you jealous?”

“No! How can I be jealous of girlfriends Anthony had when I was in kindergarten?”

So we will soon be visited by the exes – how interesting!

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