jmgoyder

wings and things

Galah!

Today Anthony was perky, lucid, vocal and even sarcastic!

I had picked a double camellia bloom from our favourite tree but forgot to take a photo (sorry, flower-lovers!)

Well, he loved it but its stem was too short so one of the carers brought a bowl in so we could somehow keep it alive until tomorrow. There were many admiring exclamations from staff and I felt quite the gardener – ha! On this first day of Spring, there will be many more blooms and I will take them in every day because it gives Anthony such delight.

My mother, Meg, visited this afternoon and she, too, admired the double bloom.

Meg: This is a potentially prize-winning flower, Anthony!

Anthony: Yes.

Me: Ants, it’s my tree – remember? I paid a small fortune for that tree!

Anthony: Yes, but I nurtured and loved it.

Meg: I think God created it but did you have a hand in it too?

Anthony (smiling): Yes.

Me: I’m the one with the foresight to buy a rare tree!

Anthony is silent.

Me: Have I upset you, Ants?

Anthony: No, but you are irritating me.

A lot of banter followed this, then my mother went home. I put the food channel on for Ants and, as usual, pretended to go shopping for chocolate or blue cheese, saying I would be back later.

So, after a very panicky few weeks where I thought Anthony was on the brink of death, he has now come back to life it would seem. Surreal! How does this happen? It is beautifully scary but so disconcerting.

The last thing he said to me as I left this afternoon was “You are such a galah, Jules!”

Yep, I agree!

 

 

 

 

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“I love you” variations

I say this so often to Anthony that he has developed some rather cynical responses:

Me: I love you!
Anthony: Yes, I know.
Me: I LOVE youuuuuu!
Anthony: So you keep saying.
Me: Oh but I absolutely adoringly love you to the moon!
Anthony: Jules, shut up!
Me: But Ants, I love your big nose, your wide eyes, your weird ears!
Anthony: Your hair looks better.
Me: What?
Anthony: Stop fumbling.

I love him – I love our conversations, often full of mirth, irony, nonsense, joy, mystery and a strange sort of hope. Of course it wasn’t always like this; over the years it has been a very difficult transition from home to nursing home. Sometimes Anthony thinks he has just arrived so we have to go through the same initial conversation again.

What most amazes me is Anthony’s acceptance of what is. He has always been able to do this and is much better at going-with-the-flow than I am, and, incredibly, has never suffered depression. That illness seems to be mine alone and has been for some time and Ants sustains me with his incredible sense of humour.

Anthony: So why are you so down?

Me: What? Why do you think? You’re in a nursing home, Ming is down in the dumps, and I still haven’t produced that blockbuster novel.

Anthony: Don’t worry so much. I cleared the shed out and re-painted it and it looks wonderful.

Me: When did you do that?

Anthony: Yesterday.

Me: Well no wonder you’re exhausted!

Anthony: Jules?

Me: What now?

Anthony: I love you too.

 

 

 

 

 

 

 

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Bump on the head!

A few days ago, I bumped my head rather dramatically. I’d stooped to pick up some clothes from the bathroom floor and stood up suddenly, forgetting to avoid the corner of the towel cupboard which is positioned above the sink. SMASH!

The lump on my head was massive to begin with, literally the size of a goose egg, but it has now shrunk to the size of a golf ball. When I had my hair cut the other day, my hairdresser was extremely impressed. She showed me the lump in a mirror and  described the bruising around the lump in rather gruesome detail. Obviously, she had to be really careful attending to my hair.

Yesterday I must have been having one of those attention-seeking days because I kept getting the nursing staff to feel my lump. I did the same thing this morning and got the same ‘ooh-ahh!’ response from various staff which was, of course, very satisfying.

The only two people who were unfazed (and remarkably unsympathetic) were Ants and Ming.

Ming: Get over it, Mum; it’s just a bump on the head!

Anthony: You need to be careful, Jules, you’re not a spring chicken anymore.

Anyway, since bumping my head, I have been really slack with both the writing and the reading of blog posts. I have also become  quite slack with cooking, cleaning, gardening, anythinging, but have also become adept at sleeping and watching netflix. Having armed myself with a fitbit a couple of weeks ago (between the asthma and the head bumping) it has been a bit discouraging to find that I have only walked about eight kilometres in as many days.

Once the lump from the bump subsides, I hope to become a more active blogger again but, in the meantime, I have a bit of a headache.

 

 

 

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Life and death questions

Even though my mother and Ming have been visiting Anthony for the last week of this rotten asthma attack, I have worried so much about Ants.

The asthma is gone now but the side-effects of a steroid burst can include severe digestive issues. Not fun.

Anyway, I just rang the nursing home and my favourite nurse picked up and, as soon as I heard her voice, I started to cry. She quickly calmed me and asked me to tell her what was what and she said she would be seeing Ants in just a few minutes and would explain the reason for my absence.

I haven’t seen Ants for a week now and I don’t think we have been apart for this long ever, so it’s a difficult thing. On the other hand, perhaps we needed a rest from each other?

One friend recently suggested that Ants is only alive (having out-lived his prostate cancer + PD diagnoses) because of me. The implication of this is that my constant presence in his life is giving him the will to live?

No, he is not vegetative yet but it won’t be long. Ming and I are reluctantly ready but also absolutely terrified.

So surreal!

 

 

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Common sense!

A few weeks ago Ming and I were having one of our on-the-front-veranda- philosophical discussions. I think it was nearly dusk but the sunset was around the corner of the house so I could only see it at an angle. This kind of experience reminds me of when my mother used to take us outside at dusk to look at the stars when my brothers and I were little.

I don’t look up enough into the sky’s various renditions; instead, I watch the loop of my internet feed, the news, blogs, my own constantly-halting story about Anthony’s Parkinson’s disease. Sometimes I feel inept, indolent; sometimes I feel an almost volcanic eruption joy after just sitting with Anthony for hours, holding his hand, stroking his head – just being with him.

Anyway, during the philosophical discussion mentioned above, I cry-laughed the story of how hurt I was by various situations and people over the last few months. “But do any of these things/people matter to you anymore, Mum?” Ming asked.

And all of a sudden, I realised that I was unnecessarily worrying about stuff/people/situations that, despite being an intractable part of the past, simply didn’t matter to me anymore. It was a revelation!

As Ming’s wisdom permeated my rather dusty psyche, I felt an enormous sense of relief and gratitude for the things/people and situations that DO matter to me.

Okay this is my last sentimental post about Ming for the time being, but he really is the most amazing person. Today this was our conversation:

Me: You are the best person I have ever met, Ming.

Ming: You didn’t meet me, Mum, you created me!

It’s nearing dusk and I am going outside to look at the sky.

 

 

 

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Uncanny

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.

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Impasse

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.

 

 

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Extraordinary!

Ever since I described Anthony as being in “good physical health” on my blog, which seems an hilariously ironic way of describing someone who has just turned 80, is living in a nursing home, with more diseases than I can count on one hand, Anthony has been remarkably fit!

It has been an extraordinary few days with Anthony walking (with his walker of course, and accompanied by carers), and talking with a bit more gusto, and smiling widely with the various staff who come and go from his room.

Today, my mother visited us in his room and it was such a delightful day. Even though Ants often refers to the mostly female staff as “those guys” he still gets a real buzz from the way many of these beautiful women flirt and banter with him.

Apparently Ants has been walking better and doing physiotherapy and occupational therapy better and he even demonstrated some arm exercises with the OT today in our room. It was hilarious and I am so grateful for these people who really do care about him!

Of course, he isn’t getting better. That would be, physiologically, impossible, but his extraordinary liveliness this week has been such a buzz. I know I’ve said this before, but Anthony is the most resilient person I have ever come across; he never complains even when I say no to his requests to come back to the farm (often his childhood farm, not this one). He accepts the status quo, accepts his health problems, accepts that when I leave to go grocery shopping and he says, “don’t be long, Jules”, I am not coming back until the next day. And this almost never comes back to bite me.

This afternoon, one of the OTs said Ants was, as always, invited to “Happy Hour” (a monthly event in the common room). His response was a perfect representation of how extraordinary and funny he is:

Anthony: Is that with all the old people?

Me: Yes, but it could be fun; we’ve done it before, remember?

Anthony: Do I have to?

Me: No, of course not!

Anthony: They’re all so old so no thanks.

And I am reminded again of the best gift Anthony gives me, not every day but often enough – laughter.

 

 

 

 

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Who am I?

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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Communicating with Anthony

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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