jmgoyder

wings and things

Anthony’s hilarious sarcasm!

Yesterday, when my mother visited us at the nursing home, she asked me how one of her friends was; her friend is in the dementia cottage where I worked for awhile last year. So I said, “Let’s go and visit her!” So we did. I love going there to see the wonderful women (residents and staff).

I told Ants we’d be back soon as the dementia cottage is just around the corner from where he is – in the high care section.

ME: Ants, we’re just going to visit some of the neighbours.
ANTHONY: What about me?
ME: I’ll be back really soon, okay. You stay here.
ANTHONY: I suppose I’ll see you in two or three weeks then.

He has a gift for sarcasm – always has!

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Bright eyes!

I feel compelled to record these updates on Anthony’s health, so that I will remember in the future. The unpredictability of his daily condition is just that – unpredictable. After days of silence and sleepiness, today his eyes were wide open (one of the many symptoms of PD is not blinking, so this makes his eyes very wide!)

Me: You look like an owl!
Anthony: I …
Me: Clear your throat – c’mon, cough!
Anthony: Coughing.
Me: So what did you want to say?
Anthony: Where is your mother?

Okay, so a little background information for those who don’t know. My mother is 81 and fighting fit despite numerous health challenges (cancer, broken hip, pelvis, wrist). She lives independently in a town not far from here and she is the epitome of maternal/grand-maternal etc.

The fact that she visits Ants so often – around twice each week and more if I need a break – is testament to her amazing love for me, her only daughter.

Today, she and I joked with Ants, and his eyes lit up several times, with mirth and affection and, of course, confusion.

Thanks, Mama!

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Once upon a time 3

At some point in time (I think she was 22) the young woman decided to put some geographical distance between the dairy farmer and herself.

Ironically, it was he who picked her up from her mother’s house, and drove her to the airport. She had dressed up and put make-up on; the photograph her mother took shows a very handsome couple with too-wide smiles.

In the plane, on the way to London, the young woman tried over and over and over again to drop her burden of love into the various oceans, islands, and even into the black of night. But it was such a massive bubble, this wonderful love, that it lost its footing during a particularly difficult gravity experiment.

It (the love thing) floated easily up into the sky-clouds and had a bit of a rest.

The dairy farmer drove back from the airport to the farm.
The young woman began her ‘nanny’ job in London.

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Death-defying

Anthony has lived, breathed and survived so many diseases now that it is gobsmacking that he is still alive and (almost) pain-free. He is like some sort of super-hero in the ‘high care’ section of the nursing home, and very popular with the staff because, after nearly four years there, he still has a twinkle in his eye.

Of course, sometimes he seems semi-comatose; other times, he is alert. It’s the same with verbal cognition: sometimes he is unable even to say a single word; other times he is vociferous. I haven’t seen him walk for awhile, but maybe he does that in the morning and I usually get there at lunch-time or in the afternoon.

Most of Anthony’s regular visitors – me, my fantastic mother, Ming, friends, family, and volunteers – actually speak to him, reminisce with him and this is wonderful. And the staff are fantastically interactive with him to the point of flirtatiousness. Be careful, girls – he is mine!

The rumour, spread by a family member, that Ants was near death, was disturbing to say the least, but, once I rang him, he admitted his mistake. It didn’t seem to occur to him that his rumour might have upset Ming and me.

This morning, I received a phone-call from a neighbour who hadn’t seen Ants for awhile and he was shocked at Anthony’s confusion and appearance. I reassured him that Ants was always a bit dishevelled in the morning. Later on today, my mother rang me to say she was with Ants and she gave me her phone so I could speak to him.

Anthony: Where are you?
Me: Ming and I are fixing a fence.
Anthony: At Bythorne?
Me: Yes.

Please don’t die, Ants. Not yet.

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Hello!

I am interrupting my blog break with a post because of an incident that has shaken me.

Two days ago, Anthony’s brother, J, a couple of lovely nephews, and Ants’ oldest friend, all convened at the nursing home. I didn’t realise at first that this had been arranged by J.- a fantastic gesture except that he forgot to invite Ming and me.

Nevertheless, I was delighted, despite the fact that J’s instructions were to have Anthony outside. The carers couldn’t lift Ants out of his armchair and they were about to get the hoist when the two nephews managed to get him into the wheelchair. I decided then that I would have to go with the flow so I wheeled Ants outside.

He was cold, uncomfortable, un-talked to (but talked about rather wonderfully by the nephews and friend); I sat right next to him and shared some champagne with him until it became obvious that he needed to get back to his room.

I came home, still delighted. It hadn’t been a perfect afternoon but it was better than nothing and I was very grateful for the presence of P. the nephew who visits Ants every weekend. He is so loyal and kind; he is a gift to Ants, Ming and me because of his sincerity and his love for Anthony.

The next day, another nephew (one who regularly visits Ants despite living 200 kms away), rang me to ask what was going on. I didn’t understand the question so he said that J. had rung various family members to come for drinks at the nursing home to say goodbye. I told him that J. and a couple of people had turned up but I hadn’t known why.

Apparently J. had decided to tell all of the family (except Ming and me) that Anthony was at death’s door. When I rang and confronted him, he explained that he just wanted to say goodbye.

“Try saying hello,” I said.

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Last Christmas

Last Christmas was the first Christmas that Ming and I didn’t bring Anthony home and, instead, exchanged gifts and food in the nursing home, where my mother joined us after church. She reminded me the other day that I had promised crayfish cocktail last year but failed to deliver; I think I was probably disheartened and just brought cheese and crackers. I don’t remember a lot about last Christmas except that Anthony was nonplussed by gifts given to him by Ming and me, and generally confused about how to open them; I do remember Ming being hurt and annoyed, and my own hot tears much later at home. It was horrible.

I am determined not to let this kind of scenario play out again this Christmas; if we can’t bring Ants home for Christmas, we will bring it to him, and this time I will do it properly. I will buy six crayfish a couple of days before Christmas and clean/de-shell them on Christmas Eve. Then I will make Anthony’s mother’s cocktail sauce (a secret-ish recipe!).

The real buzz for me is that Ming has agreed to allow me to do the pillow-case/sack thing for the last time. This means I can fill his special Christmas pillow-case with gifts just like Ants and I used to do when he was a bit younger (like a couple of years ago ha!) So Ming and I will wake up on Christmas morning and he will get some surprises and, hopefully, so will I. Then we will meet my mother at the nursing home for crayfish lunch after which Meg and Ming will probably go their separate ways and I will stay with Ants.

Anthony’s prostate cancer + Parkinson’s disease prognoses (both of which were determined several years ago), indicated that he would be probably be dead by now. So my wonderful husband – who never complains, who is never depressed, who never forgets me, who mentions Ming every hour I am with him – has exceeded his ‘use-by’ date.

Maybe this will be our last Christmas with Anthony; maybe not. In the meantime I’ve decided to take a bit of a break from blogging until after Christmas. I am messaging blog friends individually but this will take some time. If anything profound occurs to me I will put it on FB ha.

One of the most exciting things about Christmas is the Christmas Eve dinner at Meg’s (my mother’s) and this year we amount to around 20! My mother does the whole turkey roast thing and I usually bring the ham. Ashtyn Paterson (my niece) does the organisation of Secret Santa stuff. She is a legend!

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From L to R: me, Meg, and my nieces, Ash and Sage.

Sometimes I feel like I shouldn’t be happy whilst Anthony is in this predicament; then I come to my senses and yesterday I even lingered at my brother’s place instead of rushing back to the nursing home. And the other week, I lingered in Perth to see my youngest brother, his wife and Special K and, despite the dramatic circumstances, I looked at this family and wanted them to adopt me.

In February next year, Anthony will turn 80. He is not in good health but he is in quietly good spirits. Will this be our last Christmas together?

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Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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Surprise

Yesterday, I arrived at the nursing home much later than usual (around 5pm) because I was going to a 21st. Anthony was eating his evening meal and much more alert than I expected him to be. Sometimes he is unable to even form a word, let alone a sentence, especially late in the day. But he is good at surprising me!

Anthony: Where have you been?
Me: Oh you know, busy.
Anthony: Well, you’re here now.
Me: Not for long. I’m going to a 21st!
Anthony: Whose?
Me: G’s, you remember G?
Anthony: Am I invited?
Me: Of course but I don’t think you’re well enough.
Anthony: Rubbish!

I helped him with his meal while we watched the news.

Anthony: Well you better go then.
Me: What? I don’t have to go yet. Don’t get huffy with me, boy! I spend a lot of time with you, almost every single day, and when I’m not with you I miss you. I’m doing my best, Ants!

And then Anthony came out with such an eloquently profound statement it almost took my breath away… but I am developing quicker reflexes.

Anthony: Well, compared to the time I’d like you to be with me, you’re not with me at all.
Me: Oh shut up, you silly old fool!

Then I hugged and kissed him and, as soon as he smiled, I left for the party.

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When I look at these wedding photos, recently dug up, I feel amazed that we still have that same joy, regardless of the circumstances. And I feel a constant sense of surprise!

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To resuscitate or not to resuscitate?

This afternoon Anthony and I had a case conference with one of the registered nurses (RN) at the nursing home. This kind of interview is done from time to time (I think it’s annually) so that residents and/or relatives can provide feedback about everything from the quality of meals to the aesthetics of the room to the drug regime etc.

Obviously the quality of care is paramount so I just pointed out that if the television is on, Ants can’t focus on the job of walking to the shower despite two helpers, because the noise of the TV confuses his senses. I also wanted it noted that he hallucinates; that he asks me for panadol regularly but, due to his verbal difficulties now, and dementia, and that farmer stoicism, would never ask for pain relief from anybody except me.

Anthony didn’t really understand what was going on but the RN and I continued to try to include him. I was sitting on the left arm of his armchair and the RN was facing us. She wrote everything down and conversed with us as a couple as much as she could but when it came to hospitalisation I said no.

The last question on the case conference form was palliative. I think this is now a standard question and I think I have been asked this same question on numerous occasions over the nearly four years that Anthony has been in the nursing home. I still haven’t provided an answer.

But today, when that question was asked, I cried a little bit, quite openly, and the beautiful RN, cried a little bit too when Anthony said:

“You’re crying because you’re under more undue stress than usual.”

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The magic of make-believe

One of the most wonderful aspects of being a small child is the magic of ‘make-believe’ – the power of the young imagination to create anything out of anything and to see the world through the lens of magic.

The first time I climbed high up into a tree as a child, the first time Ming saw fog (he was 4), were moments of intense magic – make-believe moments

Anthony is 23 years older than I am so I have no way of knowing what his childhood make-believe moments were. But, as his Parkinson’s disease dementia progresses, I am becoming more amenable to his visual, auditory and tactile hallucinations. For example, he often sees dogs or calves in his nursing home room and wants me to shoo them into another ‘paddock’; and, yesterday, he asked me who the small boy was, in the corner of the room. This small boy often features in our faltering conversations.

Anthony: Just over there.
Me: Is it Ming?
Anthony: No, of course it isn’t Ming!
Me: So who is it?
Anthony: I don’t know.
Me: So do you like this kid?
Anthony: I think so.
Me: Okay.

I came home last night in a bit of a quandary. Do I tell Ants he is hallucinating and there isn’t a kid in his room? Why is this hallucinated little boy such a constant presence in Anthony’s room? Who is this little boy, if it isn’t Ming?

Maybe the older Anthony has make-believed himself into his childhood self? I don’t know if this is magic or tragic, but I am trying very hard to figure it out and go with the flow etc.

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