jmgoyder

wings and things

Feb 23

Who am I?

by jmgoyder

No matter how prepared for it you are, it still comes as a shock when a person you love stops recognising you.

When Ming dropped in to see Anthony on his way home the other day (it was early evening), Ants didn’t know who he was but guessed that it might be S, his youngest nephew.

I told Ming not to take it personally and that lately Anthony sometimes disassociates me from Julie and will ask me where she is. This lack of recognition doesn’t hurt at all because I have been half expecting it anyway and it is very easy to convince Anthony that I am Julie. But of course Ming was, understandably, hurt and perturbed.

In this final phase of Parkinson’s disease dementia, Anthony is experiencing paranoia, delusions, hallucinations and extreme confusion. Now that he has so much trouble speaking (physiologically and cognitively), I am getting better at listening to his whispered fears.

Anthony: Watch out for those boys.

Me: They aren’t boys – they are the nurses looking after you, Ants!

Anthony: Are you sure?

Me: Yes!

Yesterday it was me, my mother, Ming, and multiple staff, popping in and out of his room, enabling his grin but, after individuals left, Anthony would ask, “Who was that?” – even about people he has seen daily for years.

It is quite possible that one day I will go in to see my husband and he won’t recognise me, but I have decided not to worry about that day. He is still in good physical health (well for an 80-year-old!)

And even if he doesn’t recognise us as us, he will still want Ming’s boisterous hugs, my double-handed hand holding, my mother’s silent knitting, and the banter of the staff at the nursing home.

Who am I?

I am the person who reassures Anthony that the farm is going well, that the money situation is fine, that the cows are being milked by an amazing team, that there is plenty of kerosene for the Aga, that his mother is fine, that I will buy a mango for tomorrow….

 

 

 

 

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Feb 21

“Ming the Merciless”

by jmgoyder

During Ming’s last year at high school, all of the kids were allowed to imprint on their grammar school jackets an emblem or phrase that represented who they were. Ming chose “Ming the Merciless”.

And that he is! This week, he mercilessly told me some home truths about how my sadness about Anthony affects him. This has been followed by many lengthy philosophical conversations about a whole lot of topics including life, death, love, loss, grief, acceptance. Occasionally he and I have cried together about our different heartbreaks, comforted each other by just listening, and made plans to get out of our individual ruts.

Ming is not merciless at all. He is the kindest person I have ever known and the way he cares so much about me, and Ants too, is extraordinary in its depth. I think back to all of those nights when Ming slept in the bed next to Anthony’s in order to give me a break from what we called ‘the night shifts’ and I am so grateful for his help, patience, love and comfort.

Now, at 22, this child/man of ours is, understandably, a bit tired of both Anthony and me, but he cares so much that he doesn’t ever want to leave the farm. He gets a lot of peer pressure to ‘get out there’ but he wants to stay put for the time being, work as a waiter, earn some money, and be here for both Ants and me.

And, no matter how many times I tell him that we don’t want him trapped into feeling he has to be here for us, he just reiterates that he loves this home, that he doesn’t want to go anywhere at the moment, that he is content.

Ming is so much like Anthony in this way; Ants knew how to go with the flow, work hard and he had no delusions; he was content with, and proud of, life as a dedicated dairy farmer despite the changes that wreaked havoc with the industry many year ago. I have always admired Anthony’s lackadaisical attitude to life and work and his acceptance of every single ‘whatever’. Ming has this capacity too but he is merciless against himself!

I am so proud of this amazing son of ours – Ming the Merciless!

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Feb 21

Ten more minutes

by jmgoyder

Tonight, I went to see Ants later than usual because I had a party to go to later that evening. I arrived at 6pm to find him in bed, propped up comfortably and watching television. I pulled my chair close to the padded rail on the left-hand side of his bed, muted the television, kissed him and grabbed his hand.

He was very blank to begin with and, because he hardly blinks, his eyes were wide and a bit  confused. Our conversation wasn’t particularly animated because his voice was a whisper

Me: You look like a stunned mullet!

Anthony: You are ….

Me: Are you tired?

Anthony: Yes.

Me: Well I am going to a party soon but you can stay put. Is that okay?

Anthony: Yes.

Me: It’s L’s party; she’s graduated and now has her PhD. You remember L?

Anthony: I think so.

Me: May I change the station to the food channel?

He didn’t respond so I did so anyway and we watched a chef put together a delicious meal.

Me: This is making me hungry, Ants.

Anthony: Is there any chocolate?

Me: Yes!

One of our closest friends, M, provided a massive amount for Christmas and he has only gotten through half of it. So, one by one, I popped a few treats into his mouth because his hands weren’t working. (Around a year ago Anthony seemed to partially forget how to feed himself so, if I were there at mealtimes, I would feed him. We would joke about this and I would exclaim, “Feed yourself for goodness sake!” and he would say, “It’s more sexy when you do it.” I would laugh and laugh and he would smile.

Anthony has now become one of those residents who often (mostly?) has to be fed. But that’s okay because at least he still has an appetite and can still swallow adequately enough that his food doesn’t have to be mushed.

My plan was to leave the nursing home at 7pm, drop in to see my friend, N, on the way to L’s. I told Anthony this a few times as I was saying goodbye to him, then N rang to say she was running a bit late.

Me: Ants, I can stay another 10 minutes.

Anthony:  I am enjoying myself.

Me: Can you enjoy yourself when I’m not here?

Anthony: Yes.

My heart relaxed and I put my hand into his again and squeezed it and he took my hand up to his mouth and kissed it.

Ten minutes later, as I got up to go, he looked at me, his eyes wide, but no longer blank. I looked back, kissed him goodbye, and told him I would see him tomorrow.

Anthony: Ten more minutes?

Me: Yeah we’ve already had those. I love you so much, Ants!

Anthony: I love you too, Jules.

I have been so terribly sad lately that blogging seemed too hard, and responding to others’s blogs even harder, but I think I might have my writing voice back now. I hope so because I really want to write about this experience with Anthony, and Ming too; I really want to re-experience and express how beautiful ten minutes can be.

 

 

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Feb 15

Candy

by jmgoyder

Yesterday I wrote a post which I later edited because my grief sometimes interrupts my sense/ sentence structure. And I get worried that I might unwittingly upset someone good in Anthony’s family.

Candy is one of Anthony’s many nieces; she is also his god-daughter and Ming’s god-mother. But she and her husband live a long way away, up north on a station that suffers frequent droughts.

Her brother (the nephew who visits Ants every weekend), often brings Candy’s letters to read to him. I keep these in Anthony’s top drawer and often re-read them to him, which always makes his day!

Maybe this is an idea that could work? Maybe friends and relatives could email me these letters and I could read to Anthony?

Every time I read a Candy paragraph, he smiles. Thank you, Candy.

 

 

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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.’

 

 

 

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Feb 4

Anthony’s 80th birthday

by jmgoyder

Today!

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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

 

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Jan 31

A new idea

by jmgoyder

Okay so my new idea is to visit Ants later in the day, like I did this afternoon. That way, I can get other stuff done (writing, picking tomatoes from my garden, having heart-to-heart conversations with Ming, researching PDD, feeding the peacocks, vacuuming the house, finding the iron etc.)

My mother visited and fed Ants his lunch today but, by the time I got there, he was in bed, propped up ready for tea and he thought my mother’s visit was yesterday. I threw myself onto the bed and hugged him, much to his amusement, and lay there beside him for a bit, kissing him ferociously on the lips quickly, until he grinned.

Maybe I should visit later in the day so that he has a good memory of seeing me before he goes to sleep. That might be a better way for me to venture forward – dunno! That way, I could deal with daily life stuff, go into town to feed Anthony his tea, then come home and chill.

Over the years, lots of people have advised me to look after me, but I don’t buy into that whole ‘me’ thing because it’s so weird; after all, a ‘me’ can’t be isolated from a ‘we’.

I think I have now resolved various issues to do with family politics and, having spoken to Anthony’s only remaining brother yesterday, we have a tenuous agreement that he will ring me before visiting. I stated the reasons, he rejected the reasons, but at least we had a dialogue. My feistiness sought refuge in a compassionate sinkhole. Futile, of course. Silly me.

But none of this matters any more – none of it. Anthony is the best person I have ever met in my life. He was my friend for over a decade before he became my husband; he was a middle-aged, bachelor dairy farmer, a workaholic, a person who liked to run in the paddocks just for the fun of running. He was loud and, like his mother, liked to party; he was crude and respectful at the same time; he was snobby and/or ‘common’ simultaneously; he was my absolute hero.

So, perhaps, when I feed him his tea tomorrow, I will remind him of these halcyon days!

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Jan 28

Sleepyhead!

by jmgoyder

Lately Anthony has been more asleep than awake and yesterday was one of those days. I arrived in the afternoon to find him slumbering peacefully in his armchair, so I shook him awake and growled, “Wake up, Ants!” His eyes snapped open – wide and glazed, then closed again as if to say, oh it’s only you.

One of the carers dropped in to tell me he had been too sleepy to eat lunch so she heated it up and brought it in. I proceeded to feed Ants; he seemed incapable of keeping his eyes open, but his mouth opened automatically at the touch of the spoon. “Open your eyes, Ants!” I admonished from time to time and, eventually, having eaten an entire meal with his eyes closed, he did.

Anthony: Jules.

Me: Yes, it’s me. Don’t get too excited!

Anthony: Sweet.

Two hours, two words – but when I gave him my hand, he clutched it, then stroked it as if it were a cat – two hands.

When I left to come home, Ants was falling asleep again.

 

 

 

 

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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.

 

 

 

 

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