jmgoyder

wings and things

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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Nothing/everything has changed

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.

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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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If the shoe doesn’t fit

When we first entered the nursing home world, Anthony had a pair of lovely R@M Williams boots, which he loved wearing, and some ugg boots for the winter. The former boots were almost impossible to get on and the ugg boots were impractical in the summer. So I was asked to get him some velcro slippers – the kind that can be undone at the front and back for easy fitting. So far he has now gone through three pairs of these and last week I found the final pair in a bag labelled “Unsafe”.

After talking to a couple of the occupational therapy staff, it was suggested that I get him running shoes that have more support in the heel area. This is because Anthony’s feet, especially his heels, were slipping inside the slippers and this was making it difficult for staff to get him up to transfer to the shower or to walk etc. His feet won’t do what he wants them to do and one of them in particular just keeps kind of folding in on itself.

So, after several days of looking for suitable shoes and bringing two pairs in (neither of which were suitable) I have decided that I will have to fork out the $189 for the homipeds. In the meantime he is in his ugg boots.

One of the carers and I tried to get my recent shoe purchase onto Anthony’s feet today and it was absolutely impossible, so tomorrow I will go and get those homipeds and hope for the best.

Me: Ants, I have some different shoes and they’re two sizes too big so I should be able to get them on.

ONE MINUTE LATER

Me: Just push your foot in!

TWO MINUTES LATER

ME: You’re not even trying, Ants!

Anthony: Yes I am.

Me: Argh – this is ridiculous. Here’s the shoe and here’s your foot and it’s a perfect match. OMG I am sweating! Okay, let’s try the other foot.

THREE MINUTES LATER

Anthony: You should have a bit of a rest, Jules.

Me: These shoes are definitely NOT going to work because if the nurses have to spend this long getting the stupid things on your stupid feet we’ll be blacklisted for shoe negligence.

Anthony: But my hands are okay, so don’t worry.

It is things like this that sometimes get me down.

 

 

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Age

Anthony has always had a wicked sense of humour so the other day, when I asked him if he knew how old he was, I thought he was joking at first.

Me: How old do you think you are?

Anthony: 16.

Me: Are you serious or having a laugh?

Anthony: Serious. We just came to the farm.

Me: I thought you were 23 when you came to the farm.

Anthony: No, I was 16.

Me: So how old am I?

Anthony: 52?

Me: So how can I be 52 if you are only 16?

Anthony: I’m young.

Me: Sorry to have to break this to you, Ants, but you are actually 80.

LONG PAUSE

Anthony: What rubbish!

Me: No, you really are 80, Ants!

LONGER PAUSE

Me: Have I upset you?

Anthony: A bit.

Me: Oh, Ants, I’m sorry but you really truly are 80.

Anthony: I think you mean 60?

Me: Well you only look 60. You don’t have any wrinkles.

Anthony: I’m not like those old men in the ballroom.

Me: Not at all.

Anthony: I’ve never felt so fit! Look [patting his flat tummy].

Me: That’s why I’m so proud to be your wife.

Anthony: Well so you should be.

 

 

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