jmgoyder

wings and things

Magnificent

I am spending as much time with Anthony as possible before Ming and I go to Sydney for five days. Yes, anyone would think we were going to the moon for a year but I do worry, mainly because I was unable to visit Anthony for so long when I was in hospital. I know my mother will visit him everyday (she is absolutely wonderful) but there is something quite visceral about the way he misses me that has nothing whatsoever to do with cognition.

It is more to do with the passing of time; the longer the gaps between my visits, the more he suffers the unspoken pain of simply missing me – just my presence.

Today, I stayed with Anthony for hours, feeding him his lunch in the common dining room where he often is now; taking him back to his room to half-watch Dr Phil, Master Chef and Judge Judy; him listening speechlessly to the rapid pace of the conversation I had with my mother when she visited; looking bewildered as I left, until I promised to bring more chocolate.

At one point (it was probably one of Judge Judy’s calmer moments), I said, “This is great, isn’t it, Ants.” I had purposefully put my hand between both of his, then tucked them under his knee rug.

“Magnificent” he said.

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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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Happiness

In just over a week, Ming and I are off to Sydney to speak at a conference. Check out the link!

http://www.happinessanditscauses.com.au/

The title of our talk is – yes, you guessed it – “Dementia Dialogues”. I am hoping to convince the audience that it is still sometimes possible to derive, and give, great joy within the context of Dementia. Ming and I are simply going to cite a few examples of the funny and poignant conversations we share with Anthony. We only have a 15-minute slot, so our talk has to be succinct, a bit like a TED talk I guess.

I emphasised the word “sometimes” above because I am well aware that our own experience of Anthony’s Dementia is not necessarily like other people’s and I recognise how lucky we are to have a husband/father who is so resilient. The other day, when I got to the nursing home earlier than usual, and was able to feed Anthony his breakfast in bed, I asked him if he was comfortable and he whispered a booming “EXTREMELY!”

Anthony’s sanguine nature is a wonderful ‘plus’ when it comes to Dementia but every single person who has Dementia is just as individual as those of us without Dementia. Now that I am involved in support groups for carers, I have heard a fair few horror stories and I do remember our own horror story before Anthony’s admission to the nursing home. So I guess another point I want to emphasise in our conference talk is that the idea of placing a loved one in a nursing home needn’t be a tragedy.

I haven’t blogged for so long that now I’m rambling – ha! It’s good to get the words out. Now I just have to prepare for the conference – yikes!

 

 

 

 

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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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