jmgoyder

wings and things

Planning a funeral

Anthony isn’t dead yet, and we have never discussed things like burial versus cremation, so I guess those decisions will be up to me, and Ming.

Today, I fed him his vitamised lunch, but he wasn’t particularly interested in the food; he was, as usual (as in the last week or so), very thirsty, so the drinks were a success. Conversation was close to nil and then he went to sleep while I watched television blankly.

I soon realised that he must have had one of those TIAs (mini-strokes) because he was unwakeable. But, as I’d already signed the forms indicating that Anthony was not a candidate for hospitalisation, resuscitation, a feeding tube, or any intervention, I didn’t alert the staff. In all honesty, having seen him diminish so rapidly over recent days, I rather hoped he would die with my warm thumb on his cold wrist.

All afternoon, I kept checking his pulse, hoping for two opposite things! I wanted him to die, for his sake; I wanted him to live, for my sake, and for Ming’s.

Death is definitely on its way for Anthony. Strangely, I didn’t see it coming but now I do. Accepting that has helped me, tonight, to make funeral arrangement decisions. If I make those decisions now, and pre-pay for his funeral, we will at least be able to grieve without so much red tape.

Last week, Ants and I would have been able to joke about funeral caskets; last week, Ming and I would have been able to discuss the future with Anthony in it; this week the whole story has changed.

 

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All of a sudden

I am still a bit shocked at how rapidly Anthony seems to have deteriorated in such a short space of time – in just a week and half. Of course, his inability to eat food that isn’t vitamised, the fading of his whispered voice, and the cognitive decline, were all things I anticipated in a ‘one day ….’ way. I didn’t realise, until now, that it could all happen so suddenly.

Less than two weeks ago, I was helping Anthony with his lunch in the dining room of the nursing home and one of the carers, who was helping another resident with her food, remarked about how good Anthony’s appetite still was. I remember telling her how wonderful it was that he could still eat normally. Then, just 15 minutes later, Anthony began to spit out his chewed food over and over again. Ironic!

So, from someone who was gobbling up everything from boiled eggs, to oysters, to fruit cake, to cherries, to chocolate, as well as the wonderful meals provided at the nursing home (often a roast dinner at noon), Anthony is struggling to swallow even custard. Not only that: he has lost his appetite in general, eats very slowly, has become extremely thirsty, and he seems to have gone quite blank. Once again, I was expecting all of this but I thought it would be more gradual, not so sudden.

I am seeing our doctor tomorrow in the hope that he will give me a prognosis estimate if that’s possible. After all, as I’ve often said, jokingly, Anthony has outlived his ‘use by’ status by years; his accepting resiliance is amazing!

Our fantastic conversations, his one-liners, the joking and quipping and teasing … all impossible now. How did this happen so suddenly? There is no longer any point in me recording these with my always-handy pen and paper. I am so glad I have scribbled and blogged and noted so many of these conversations because, if Anthony becomes totally silent, I know what to talk about – the Aga, there is plenty of toothpaste, lots of money in the bank, and Ming is fine.

Since lunch is the main meal, I’ve decided to stick to a routine of being at the nursing home between 11am – 2pmish daily so that I can feed Anthony his lunch, talk with him, embrace him, and just be with him.

As I was leaving him this afternoon, he was, as usual these days, in slumber mode but all of a sudden he opened his eyes wide.

“Give me a smile, Ants!” I said, laughing at his wide eyes.

He took one hand from underneath his knee blanket and pointed through the window. Then he whispered, “Out there .”

PS. To blog and facebook friends: I apologise for not reading your posts lately – will catch up soon!

 

 

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Incoherence

Anthony can’t find or utter the words any more and this is terribly frustrating for him, and for Ming and me. He was much more awake today than he has been for the last week, so I felt a bit silly to have thought/written that he might be on the brink of death. Last year I was terribly angry with a relative who suggested this and now it’s me thinking the same thing, almost a year later.

I am shocked at how, within the space of a week, Anthony has developed dysphagia to the extent that he has difficulty in swallowing even vitamised food, and can hardly speak any more. It is the latter that is most upsetting for me because of how much I have always enjoyed our conversations, no matter how bizarre.

If Anthony stops speaking altogether, I will have to become more creative in what I say to him. The blog will help, photos of the farm will help, Ming references will help, memories will help.

I know that Anthony’s incoherence will soon become a silence that I may not know how to read and this worries me.

Me: I love you, Ants.

Anthony: ….

Me: You’re supposed to say it back!

Anthony: I love you, Jules.

 

 

 

 

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Flights of fancy

A few weeks ago, Anthony told me he had been running all morning.

Me: How far did you run?
Anthony: Eighteen miles.
Me: Well, it’s no wonder you’re so exhausted! You must have overdone it. You’re not a spring chicken any more, you know, Ants!
Anthony: Shut up (smiling)
Me: Well bravo anyway. Have a nap if you want. You deserve it. I could never run that far!
Anthony: No, you couldn’t.

I love these flights of fancy, these ‘fabulations’ and, even though I know they are a product of Anthony’s Parkinson’s disease dementia, they don’t differ so much from what we all experience sometimes. Often I will wake up in the morning with what I call ‘adventure dreams’ still hanging around in my psyche, waiting for the next chapter, or a conclusion.

For someone who can barely walk now, it’s beautiful to know that Anthony thinks he can still run.

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Comfort

I realised recently that my level of anxiety about Anthony was very high when I was home and unable to visit (due to flu or whatever). I was anxious about everything from him being cold (because his internal thermostat is wonky) to his confusion about why I wasn’t there.

Today, as soon as I entered his room, my anxiety dissipated. He was in sleepy mode and couldn’t remember how to eat his lunch, but he was still there – my husband, my rock.

As Anthony slept, and I watched re-runs of “Neighours” (because I forgot to bring my box of paperwork in), I kept my hand on his shoulder or head, as I usually do, and, gradually, his easy breathing gave me a sense of peace.

Sometimes I cry and cry into Anthony’s shoulder and he gives me comfort just by whispering, “Jules, Jules?”

We are now into our fifth year of Anthony being in a home away from home so he has outlived predictions that he would die either of prostate cancer or Parkinson’s disease by now. His dementia is an offshoot of PD and getting worse but he still knows who I am, who Ming is, and who most family members are.

And, out of all of my friends, family, staff, guess who gives me the most comfort?

Anthony himself.

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Grit

Anthony was weighed the other day and he is only seven kilos heavier than I am – 20 kilos lighter than he was a few years ago.

Despite the weight loss, his appetite is fantastic! The food at the nursing home is good and plentiful, with the main meal being lunch which is often a roast. Thankfully he has not yet graduated to vitamized food and, even if he does begin to have difficulty swallowing, I am hoping this will never happen.

I love bringing in treats, and sometimes the kitchen staff give Anthony an extra serve of dessert if it happens to be pavlova. But most of the desserts are served with ice-cream (which Ants finds too cold) so lately I have been bringing cream in which he absolutely loves. He is, after all, a dairy farmer.

The other day I brought a cheesecake, a ripe banana and some double cream and, in less that ten minutes, Anthony vacuumed it all up! But the thing that made this extreme dessert so wonderful was the ‘grit’.

‘Grit’ is the sugar sprinkled on top of already decadent desserts. The other day I forgot to bring the grit so as I was feeding him mouthfuls of cheesecake, mushed banana and double cream, he suddenly protested:

Anthony: Where’s the grit?

I rushed into the nursing home kitchen and snuck a bit of sugar for him.

Anthony: This is much better.

Grit.

 

 

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Health kick!

Over the last few weeks I have been making a determined effort to get healthier (you know, the usual things: fitbit, green juice, no wheat, organic wine, aromatherapy) and …

… exercise. Not happening, despite the fitbit!

So yesterday I went to one of the many gyms in Bunbury and tomorrow I will begin one of those 3-day free trials. I met one of the managers (D) and she was lovely. The gym isn’t big and flashy and has an easy-going atmosphere. D asked what I most wanted out of the gym and I said, “No tummy and stronger arms; I don’t want to walk or cycle in here because I would rather do that outside.”

Anyway, I’m quite excited about tomorrow. I’ve had gym memberships before but not for years so I will have to re-learn how to use the equipment.

When I told Ants he said, “Well, you’ll be battling to compete with my fitness” patting his flat tummy. He then proceeded to tell me that he did 25 push-ups per day and that I should try it.

Me: I can’t even do one push-up!

Anthony: That’s why you have your problem.

Me: What problem?

Anthony: The tummy (pointing to mine before I put one of his pillows onto it).

Me: Are you calling me fat? How DARE you!

Anthony: Jules, you know I’m kidding; you are perfect.

This verbal exchange was enhanced throughout by Anthony’s fantastic smile. I’m just glad he won’t see me struggling with the weights etc. tomorrow. I will paint a much better picture when I see him, so that he will be as proud of me as I am of him.

Me: Ants, I admire you so much, so much – the way you keep on being well and fit despite the Parkinson’s! And you never get down like I do. You are amazing.

Anthony: I know.

Me: Oh. Well, anyway, I’ll start the gym thing tomorrow morning  and come and see you straight after.

Anthony: I know [yawning]

Me: Sorry if I’m boring you!

Anthony: Off you go, then.

Me: What? Where?

Anthony: To that wildlife park…

I guess the health kick challenge is on!

 

 

 

 

 

 

 

 

 

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To my son, on Mothers’ Day

Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your birth.

You, like many other babies, wanted to stay safely within the parameters of life and death/inside and outside, but you eventually emerged. After too many hours, you were inducted out of your cubbyhole and splashed into the too-bright-light of a bassinet.

I have never loved anyone as much as you, my wonderful, winged son. Yes, we argue and disagree; yes, we agree and philosophise; yes we occasionally look for walls to punch, shoulders to cry into: yes.

Nothing can ever change the gift of you to us – to Anthony, to me, to the extended family. Thanks for being this gift, for being exactly who you are. We are so proud that you are our son, Ming!

Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your life.

 

 

 

 

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Contentment

I think that contentment is underrated. Anthony has always had it, and Ming has it too, whereas I have always struggled.

Lately, Anthony makes me feel the most wonderful calm; he is so accepting of what is (a huge lesson to me). Ming drops in between restaurant shifts and we all have a bit of a laugh at whatever show is on TV.

Today, after Ming left, this was my conversation with Anthony:

Me: We are all so lucky in our relationship with each other, Ants!

Anthony: Yes, we don’t seem to be losing any hours.

When I think about his words, I feel content.

 

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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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