jmgoyder

wings and things

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.

Alzheimer's Disease; Dementia Anthony blogging death and dying Family Friendship Grief Happiness joy laughter LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia

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Jul 2

Nothing/everything has changed

by jmgoyder

I feel a sense of trepidation, re-entering the blog world after what seems a very long time to me, but is actually only a month. It has been wonderful to be free of the compulsion to both write and read but it’s also very difficult to avoid the guilt; after all, blogging is a reciprocal activity.

Some of my blog friends are also Facebook friends so, to the latter, I apologise for any future repetition but I have been trying to write 500-word column-type articles about Dementia. The reason for this is that I’ve begun volunteering for various organisations that work hard to ensure the ongoing improvement of Dementia care in Western Australia.

The fact that these organisations have welcomed my input so warmly has motivated me to write, network, and speak much more vociferously, about Dementia care, and the opportunities are opening up! This is very exciting for me as I have been a fairly silent, but passionate, advocate for many years. There is a strange, yet wonderful, serendipity in the fact that I was completing my PhD about Alzheimer’s Disease and storytelling during my newlywed years. I had no idea then, of course, that Anthony would one day succumb to PDD (Parkinson’s Disease Dementia).

One of the most delightful things that has happened over this last month is that Ming, our 22-year-old son, also wants to share our story from his perspective. And I don’t think our story would have the same oomph without his input. Ming has, many times, saved me from despair, and vice versa; Anthony and I have the most incredible son with a capacity for empathy that beats the hell out of mine!

Anyway, this post is a rather clumsy re-launch of my blog. I am not going to try to catch up with others’ blogs for the time being, but will certainly keep in touch one way or another. I really just want to focus on Dementia for the time being.

Alzheimer's Disease; Dementia Anthony blogging Family Friendship Grief Happiness LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia

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Mar 21

The pink sky

by jmgoyder

I watch the sky pinking from our front veranda and, breathing easily now, again, I wonder with a deep curiosity about your strong voice to me on my mother’s phone yesterday. Your voice was louder than usual, and comforting. You remembered my few-and-far-between asthma attacks just as you remembered the drama of how we turned orange from too much carrot juice years ago. I couldn’t believe how strong your voice was; you sounded so normal and in control; your voice wasn’t whispery, you didn’t sound confused, you helped me.

I have now drawn the blinds on a pink sky gone dark and am into day two of no steroids for the asthma. Some friends/commenters have suggested that this asthma attack may well be due to emotional stuff and I am quite willing to accept that possibility. Perhaps the ongoing, relentless, anticipatory grief of losing my beautiful husband has gotten the better of my psyche. Perhaps seeing our son’s grief and bewilderment has turned everything I once saw as pink into a dull grey. I don’t know.

It is probably a terrible pressure on a single son to ask for the pink in the sky to come back, but I know, without any doubt, that he can do this. Ming.

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Mar 16

Once upon a time 7

by jmgoyder

He took me out for dinner. This had never happened to me before – this ‘out for dinner’ thing. It was at a place called Eagle Towers (which was, a decade-or-so later, the venue we chose for our small wedding reception).

I don’t quite remember which ‘goodbye’ this was but I think it must have been the first because I was so shy and ecstatic that this gorgeous man was taking me on a ‘date’! I was about to go somewhere; I think it was Sydney, but it might have been up north, or Europe.

We had a beautiful meal and he ordered a half bottle of champagne. I was shy, overjoyed, transparently in love; he was funny, loving, respectful of my youth, encouraging of my adolescent ambitions.

I wanted him to ask me to stay. I wanted him to say “please don’t go, Jules” and maybe he would have said this if it hadn’t been for the fact that he didn’t have enough money to pay for our dinner.

It was $42 and he only had $41 (I remember this so vividly!)

He drove me back to my parents’ house, walked me to the back door, hugged me fiercely and said, “Why do you have to go, Jules?”

 

Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Teenagers

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Mar 2

Uncanny

by jmgoyder

Today I arrived at the nursing home in time to feed Ants his lunch after which he also consumed three chocolate bars – a Cherry Ripe, a Boost, and a Mars Bar (thanks, Mel!)

He chewed through all of this chocolate slowly – very slowly!

Me: Are you chewing every mouthful one hundred times?

Anthony: Yes, because I am enjoying it one hundred times.

But that’s not the point of this post. Even though Anthony’s previously loud voice has become such a whisper, this is what he said next:

Anthony: I can’t stop thinking about what X said yesterday.

Me: What? Was X here?

Anthony: Yes and he said “Where is Julie; we need Julie.”

And Ants actually repeated this a couple of times, and was adamant that X had said these positive words about me. So, whether Ants is deluded or not, I choose to believe it.

Good.

blogging bullying Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia

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Feb 29

Impasse

by jmgoyder

There is always a dilemma when you want to write a story that might hurt other people the way the story’s reality has hurt you.

Recently, I have wrestled with how to reconcile forgiveness with writing the truth of my decades-long relationship with Anthony, including all of the pitfalls.

The “love story” and “once upon a time” posts began to retell a story that has already happened. But, as soon as I ventured into writing the ugly bits of the story, I received some pretty nasty flak; some advice to be careful what I write;  and, paradoxically, some encouragement to keep writing the story; etc.

So, in order not to upset people, I’ve decided to continue writing this story on a different blog – an anonymous platform – from which I can divulge, in story-telling detail, the truth.

In the meantime, this blog will remain positive.

 

 

Australia blogging bullying Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Western Australia

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Feb 14

Communicating with Anthony

by jmgoyder

It is sometimes difficult for me to explain to family, friends and staff about how best to communicate with Anthony now that he has become so silent. So it was refreshing yesterday to have one of the carers tell me that she had learned how important it was to explain to Ants that they were taking him to the toilet or shower etc. and sometimes using the hoist.

“If we explain to him first, everything goes smoothly,” she said; “but if we don’t, he resists.” I told her how grateful I was for this understanding, remembering the times, a couple of years ago, when the use of the hoist terrified him – late night phone-calls from the nursing home in which I had to calm him down and reassure him that he wasn’t being captured by pirates and put into a torture chamber.

Thankfully, these kind of hallucinatory panic attacks were fairly short-lived and now that Ants is less ambulant, the hoist is used often to transfer him from one place to another. As far as I know, this no longer causes fear for him.

Verbally, Anthony is very slow to respond (both cognitively and vocally) so you need to sit close enough to touch him, or give him a ‘nosy’ (nose kiss), or yell nonsense, all of which Ming and I did this afternoon. And Anthony smiled many times, especially at Ming’s antics and asking, at one point, who the ‘bloke’ was.

Me: I am NOT  a bloke, Ants!

Anthony: Oh.

Me: It’s me – your wife!

Anthony: Yes, it is.

Okay so we are now into the fifth year of Anthony’s life in the nursing home and I am continually gobsmacked at how he continues to survive advanced prostate cancer, liver disease and PDD (Parkinson’s disease dementia). He is definitely way past his ‘used-by’ date but, as he isn’t in physical pain, I don’t worry as much; not only that – he is always positive, always accepting, always answering the ‘how-are-you?’ question with a whispered ‘fighting fit.’

 

 

 

Australia bullying Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

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Feb 3

Gentle

by jmgoyder

The other day I felt the whiplash warning of a storm,

but it passed!

I had my armour on, I had my family protected; I was ready for the storm,

but it dissipated!

I sharpened my sentences with full-stops so that they wouldn’t ricochet back as semi-colons,

but nothing I wrote/said had the slightest effect on the storm-brewer.

I’ve become like a cartoon character of the lioness/mother bear who protects her family.

Overly sentimental posts about Anthony are simply an expression of ongoing grief, disbelief that he has lived so many years post prognoses. Ming has been absolutely amazing in every way.

Ming has a way of unravelling the bitter-and- twisted yarn into a coherent thought and, today, I thank him so much for reminding me to be gentle.

Gentle

 

Australia blogging bullying Embarrassing moments Family Friendship Grief Happiness joy LOVE STORY My published writing nursing homes Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

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Jan 27

Once upon a time 6

by jmgoyder

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.

 

 

 

 

Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Uncategorized Wings

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Jan 7

Auto/biographical risks

by jmgoyder

I was very fortunate to have once been a student of Elizabeth Jolley. She wrote fiction that was heavily laced with fact; she changed names to protect the guilty; she took risks.

The primary reason that I have hesitated over the years (decades actually!) to write what I think is a rather spectacular love story, is due to the yucky bits of the story – the betrayals, conflicts, mysteries and agonies in and amongst its success.

By writing increments of this “Once upon a time” story, I face the challenge of writing about how Anthony and I dealt with the disapproval of our relationship from both sides – from both families – and from well-meaning friends.

Over the last few weeks I have blogged outside the “Once upon a time” story, with tidbits of information about a recent event that traumatised me, and reminded me of some of the yucky stuff from the past. These posts, some now deleted, or edited, are, privately, an avenue into the complicated past of my relationship with Anthony.

When I say rather dramatic things like ‘spectacular love story’ I only mean that it was against all odds – a 41-year-old and an 18-year-old (the beginning), and now (the ending?), a nearly 57-year-old girl/woman sitting in a nursing home with her hands hugged by his nearly 80-year-old fingers.

My recent truthful tidbits have earned me the angst of one family member and, conversely, the support of many others.

I remember, years ago, Elizabeth Jolly speaking to me about one of my short stories:

EJ: This is far too painful, dear. Rewrite it.

Australia blogging bullying Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Teenagers Western Australia Wings

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