jmgoyder

wings and things

2. “Where is Mum?”

Anthony asks this question at least once a week and, because it distresses him, I have to be really careful with my answers. If I say she is fine and at home on the farm, he worries that she is alone and I have to reassure him that Ming is there with her.

This wonderful woman, Anthony’s mother, fondly called ‘Gar’ by family and friends, died over two decades ago. I adored her, was frightened of her (she was a true matriarch), and I was with her when she died at the age of  86. Her last words to me were, Will you look after Anthony? And, buzzing with all of the feelings that come with first love, I said yes.

I was a teenager, just 18, and Anthony was 41. My adoration of him was embarrassingly obvious to both Gar and Anthony. Gar encouraged it in a rather mischievous way but Anthony spurned my clumsy adolescent love-sick self, out of respect for my youth. It would be many years before he and I graduated from platonic to romantic.

Finally, at the age of 56, this workaholic, dairy farmer, best friend, bachelor, proposed. By then, I had steeled myself to imagine life without Anthony, but I had this absolute certainty about our son-to-be. And I was right. But I didn’t know that then.

Anthony’s proposal of marriage was almost too late as I was beginning a tentative relationship with another man – a kinder, younger, more generous man.  I was in my early 30s by then and thought it best to finally move on and away from Anthony.

Then, whammo, Anthony just came to his senses. It was so sudden and such a shock to hear him crying on the phone and declaring love. I had never known him to express such emotion so I was flabbergasted and cynical. But I got over that and said yes to the marriage proposal.

Gar had always encouraged it, after all!

Anthony: Where is Mum?

Me: She’s in the kitchen, making breakfast, Ants.

 

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Unloneliness, empathy and fatigue

Yesterday’s post about loneliness was, I realise now, not just about me. I had been to a carer support meeting in the morning, then to see Anthony at noon, then to visit some residents at a different nursing home in the afternoon. After I got home in the early evening, I messaged a couple of friends whose loved ones are in care.

In terms of volunteering, it was a great day but I guess I must have absorbed a little too much of other people’s loneliness (in the context of Dementia). The sore throat that I was trying to ignore did a little crescendo thing, reminding me to rest up.

The various talks at the conference gave me some insight into the concepts, and practicalities, of, for instance, empathy. Somebody used the phrase, ’empathy fatigue’ and I thought aha – so that’s why I keep getting sick.

However, when I looked this phrase up, I learned that empathy fatigue happens to people whose empathy resources have dried up due to fatigue. Oh! I guess I got that wrong because my empathy is still on full alert, but my fatigue is extreme.

The responses to my post about loneliness are a reminder to me that I am not alone in my situation. I am so grateful for this support because it helps me to support other people dealing with the grief and loss associated with Dementia.

Unlonely x

 

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Testing

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Making mistakes

This afternoon, my first niece, Ashtyn, came to visit us in the nursing home. I was holding Anthony’s hand and chatting about the Sydney conference to Ash, unaware that sleepy-looking Anthony was listening intently, especially when I lowered my voice.

You see, I obviously don’t want Ants to know Ming and I are going to be away for a few days because I don’t want him to feel abandoned, so I wasn’t going to tell him. And I didn’t anticipate that he would pick up on my conversation with Ashtyn in any accurate way because just before she arrived he’d asked me to clear away the mess of non-existent champagne glasses on the window ledge.

But, as soon as Ashtyn left, Anthony said, “So why didn’t you tell me you were going to Sydney?”

Sprung! I fumbled around with reasons and excuses and reassurances that it wouldn’t be for ages, all the little lies tucked inside my throat like baby mosquitoes, and it took ages to convince him that I wasn’t leaving him.

Oh well, I have three days before we go, so I will spend as much time as possible with Ants at the nursing home. It was a mistake to talk so openly in front of him about my own plans and I accidentally made him feel excluded – argh.

Another lesson learned.

The thing that saved the situation was when I remarked on how beautiful Ashtyn looked (pregnant with second child) and he said, “She knows how to do it.”

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Beautiful bloggers

To those blog and Facebook friends who have commented on my recent posts, thanks so much for your support. I especially appreciate the feedback regarding the conference talk Ming and I will be delivering next week.

 

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Dementia Dilemmas

Okay, so in just a few days, Ming and I will be talking about how we have dealt with Anthony’s Dementia, including the nursing home decision. I have prepared a talk that mostly deals with the positives of our experience. It is, after all, a conference about happiness.

The trouble is that our own experience is possibly unique and may not resemble other people’s experiences of Dementia. So I am probably going to have to be very careful not to generalise, to pay respect to those carers who are dealing with personality changes, behavioural difficulties, and the horribleness of a loved one not recognising another loved one.

It is nearly six years since we finally (mutually) made the nursing home decision and, yes, the first year was a blank of heartbreak. But, since that horrible first year, I have made the nursing home my home too.

Today:

Me: Ants, I so love your big nose!

Anthony: You just want to see me naked, Jules!

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Hesitant

It is kind of weird to have come out of what felt like a near-death experience with something that was finally diagnosed as mycoplasma pneumonia. I had the precursors of this for many weeks, but the dreadful fever finally made it an emergency. Eighteen days in isolation in a hospital with seven days of uncertainty: is it cancer and, if so, did I do this to myself ? The guilt, the embarrassment, the relief – NO TUMOUR.

Now, many weeks later, still physically weak, and with a nasty cough, I see the hospital doctor for my follow-up appointment and he shows me my current chest X-rays (diminished signs of pneumonia) but orders another MRI. No hurry.

I was so terribly worried about Anthony but my mother and Ming visited him daily and rang me so that I could speak to him. Anthony seemed to quite like the drama of me being in hospital and, on the first day I was strong enough to visit him he almost immediately said, “Well, off you go!”

 

 

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Holding hands

I was holding Anthony’s hand the other day and he very gently removed my hand from his and gave it back to me.

Me: So you don’t like holding hands with me any more, Ants?

Anthony: It’s a bit tiring, Jules.

Okay.

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Dancing in the driveway

As I drove up the driveway this afternoon, towards the house, I saw that the dogs were out (Jack, our Irish terrier, and Pip, the new pup on the block). They were frolicking with each other so joyfully that my anxious heart immediately went into calm mode and then I saw why they were so excited.

Ming was dancing in the driveway!

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Dementia adventures

Well today was a bit different from the norm in the sense that my visit to Anthony was fleeting. I was on my way to see a movie with my mother and I literally only had about 10 minutes to spare.

So I rushed into Anthony’s room, admitted I was in a rush (to go to work – my latest ruse) and he was delighted. I knew he was delighted because he smiled and seemed happy to see me so buzzed. I hugged and kissed him multiple times and his smile got bigger.

And when I said, ‘seeya’ he was absolutely fine!

Is it possible that a fleeting visit like this can bring the same amount of joy and comfort as a prolonged visit? Would friends and family be more willing to visit if they knew it could be easy, fleeting, short-lived?

Anthony doesn’t know he has dementia on top of everything else and I don’t see the point in telling him this. But he does know who we are – his friends and family. Sometimes he is confused about who is who but so what!

We still have a lot of joy, and a lot of joy to come, if Ants keeps living and defying the odds. He is an absolute legend and has taught me so much!

 

 

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