jmgoyder

wings and things

Last rites

Today, my best friend, Tony, an Anglican priest, came all the way down from Perth to pray for Anthony, Ming and me and it was beautiful. Ants was up and in his armchair, and awake, but not aware (I hope!) that it was a last rites situation. Tony read prayers and Ming and I also read bits and pieces from the Anglican prayer book – passages that pertained to our situation. Then Tony annointed Anthony with the holy oil that has been sitting on the kitchen mantle piece for years ever since a nun friend blessed him years ago when he was still living at home. Sister Romanus kept her holy oil in one of those now old-fashioned camera film containers and, after so long, it had turned into a putty consistency.

After the formalities, Tony held Anthony’s hand and said his own personal prayer for all of us. While he was doing this, Ming and I also put our hands on Ants. We were all emotional but not to the point of crying, whereas Ants seemed a bit nonplussed but admitted that he understood more than he let on.This was not in reference to the prayers but to our conversation later about his torana! I am curious to find out tomorrow if he remembers today’s experience.

Ming and I will never forget today and, for me, the peacefulness that Tony instilled has slowed my anxious heartbeat into a normal thrum and my tears are less wretched. I don’t feel panicked any more. Anthony is probably going to scare the hell out of me more and more often with these TIAs but the joy of seeing him awake surpasses that. The fact that he appears to be pain-free is a blessing.

Thank you, Tony, for today.

 

 

 

 

 

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Going with the flow ….

Most Dementia care advocates/experts, and organisations, seem to agree now that ‘going with the flow’ is a better, kinder way of responding to people with Dementia. For example, when Anthony asks me to find the chainsaw so he can cut wood for the fireplace, I say yes, of course; and when Anthony asked Ming yesterday to move the calves to a different paddock, Ming said yes, of course.

I was really proud of Ming yesterday because when he came home (we’d just missed each other at the nursing home), he said that Anthony mistook him for a nephew and Ming had to say, “It’s me, Dad – Ming, your son.” I guess that’s an example of not going with the flow but Ming did it gently and acknowledged to me that he and his cousin do look alike. I was proud of him for not being upset and for being so gentle in reminding Anthony who he was. I was also proud of him for agreeing to move the imagined calves that Ants often sees in the grassed area outside his window.

Going with the flow in terms of what Anthony says, or tries to say, is easy for me. I am getting better at mind-reading when he is stumped for words, when sentences are impossible. I know him so well, who he was, and who he is now with the Dementia, so I know how to reassure him that his mother and deceased siblings are fine, that the dairy is functioning, that there is plenty of money in the bank, that Ming is growing up fast (Ants often thinks Ming is still an infant).

But going with the flow for me, personally, has recently become extremely difficult and traumatic due to Anthony’s sudden deterioration a couple of weeks ago with the dysphagia and TIAs. My grief was acute because I thought he was about to die. Then, when he didn’t die, my emotions became all mangled and I became consumed with anxiety and uncertainty.

I spoke with my fantastic psychologist this morning about how frustrated and exhausted I was with not knowing when Anthony would die. Of course I already realise that, despite him being in the last stages of everything now, it could still be a long time.  She suggested just focussing on each day as it comes, not having any expectations, and re-finding my own identity, the latter of which was something my mother also said to me the other day.

As someone about to facilitate carer support groups, I felt the need to figure some of this stuff out but that’s where the ‘going with the flow’ idea caught me as I fell. There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.

I have been feeling so weak and distraught lately – even disorientated – but the volunteering jobs have been like a gift! Going with the flow….

 

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Forewarned is forearmed

Yesterday was a day of terror for me and last night I couldn’t sleep, thinking that any minute I would receive “the phone-call” from the nursing home, to say that Anthony had died.

In the early hours of today, I eventually slept but woke up and, once again, in the grip of that horrible terror, I reached for my phone. No messages. Phew.

This morning, I headed in to the nursing home, thinking I would be met by sombre faces and bad news and, instead, I found Anthony, alive and in a wheelchair, watching the news in one of the communal areas. I wheeled him back to his room and managed to get him into his armchair, then rang a couple of worried relatives so that they could speak to him on the phone. He managed a few words but kept handing the phone back to me.

At noon, I fed him his vitamised lunch which he ate most of and he said, about the dessert (a frothy vanilla mousse), “My favourite”. I must find out what it is so I can bring him some, because he loves it and it’s easy to swallow.

After lunch, he fell asleep, just like yesterday, but he didn’t lose consciousness. I know this because, every time I shook him, he woke up. Yesterday, he didn’t.

Yesterday forewarned me by forcing me to face the prospect of Anthony’s death, something I have been reluctant to do until now. And, in facing this inevitability, I am now forearmed with the knowledge of how to plan his funeral, right down to the kind of casket/coffin to purchase (the cheapest is still around $1,500 – I had no idea – Ants would be appalled!) I have decided who to ask to do readings, be pallbearers, deliver eulogies and am now trying to decide what music would be appropriate.

The terror has gone – whoosh – gone! There is no way of knowing how soon Anthony will die – even the doctor can’t predict that – but, as the latest deterioration has been so fast, and so shocking to me, I feel much more prepared than I was.

And that’s a good thing.

 

 

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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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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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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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Love and laughter

I think if I had to choose between love and laughter in a relationship, I would choose laughter. Obviously, having both is ideal but love can be so heavy sometimes, whereas laughter is light.

Today, Anthony was in great form and when I arrived he was participating in a game of coits during “gentle gym”. I joined the game by his side and Kaye (pseudonym), one of the OTs, was running things and she is such a fun-loving compassionate person, she made Anthony feel good about himself despite his bad score! Many of the residents were, like Ants, wheelchair-bound, and couldn’t really throw the coits but it was still fun and there were a lot of laughs. I think I will make a point of going to these sessions regularly because it was obvious that Ants was thrilled I was there.

Later, in his room, once he was settled back into his armchair, we had the following conversation (he has been extremely vocal lately – just when I was getting used to his silence).

Ants: I haven’t seen you for awhile.
Me: What a lot of rubbish! I saw you the day before yesterday!
Ants: No, it was the day before the day before yesterday [accurate!]
Me: So are we heading for an argument?
Ants: No, but sometimes I think you have run off with another man.
Me: How ridiculous! Why would I do that when I adore you so much?
Ants: I’m not sure you do anymore.
Me: Okay now listen to me, you idiot. It’s not all about you. Sometimes I need a break and sometimes I need to do other stuff.
Ants: Like what?
Me: Laundry, housework, cooking, Ming.
Ants: So where will you be tonight?
Me: At home of course.
Ants: Where is that?
Me: Bythorne [the name of our farm]
Ants: Bythorne? [looking very surprised]
Me: Yes, silly!

The conversation meandered over the few hours I was there, but here is another excerpt in response to a cooking show on television:

Me: Look at that roast duck!
Ants: Beautiful.
Me: That guy has cooked it slowly for over three hours.
Ants: Too long.
Me: Yeah, but it looks perfect, Ants!
Ants: You have a point. When are you going to cook it?
Me: Actually, that’s a great idea but I need to get the Aga going first.
Ants: I lit it the other day but we need more kerosene.
Me: I am ordering some next week.
Ants: Isn’t the grass green [looking at the wall]
Me: Yes, it’s wonderful.
Ants: Do you want me to light the fireplace? [trying to get up – impossible]
Me: No, Ming’s already done it.
Ants: He’s a good son isn’t he.
Me: He’s a great son.

And, as I was leaving:

Me: I have to go now to get some groceries.
Ants: But every time I let you go, you don’t come back until the next day.
Me: But I do come back! I love you so much, Ants.
Ants: I don’t love you as much now.
Me: What? Why? How dare you! [tickling him]
Ants: Because you keep leaving me and I don’t know where Mum is.
Me: Argh! Ants, we are in a nursing home and you are in good hands. You have Parkinson’s disease and I have to go and get some groceries! Get with it! I’ll see you tomorrow.

Okay, so all of the above was love-driven but it was the hilarious laughter and smiles we both shared that made these poignant and bittersweet conversations absolutely wonderful. It was one of the best days Ants and I have had for ages.

The love hurts, but the laughter heals.

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