jmgoyder

wings and things

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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Rollercoaster 2

I will soon be facilitating a carer support group so I guess the last couple of weeks will help. The trauma of seeing Anthony unconscious, then the joy of seeing him okay again, over and over again, especially lately, has absolutely done my head in.

Today, we had a multitude of visitors and it was wonderful – especially when my great-nephew sat on Anthony’s knee! And yet yesterday, Ants was in bed, sleepy-headed and not particularly responsive to visitors.

It is hard to admit these things, but I would like to be honest about how I feel, in the hope that others will be able to relate and not feel guilty. It would not be possible for me to admit these feelings if I didn’t love Anthony so the following observations and questions are addressed to him despite the fact that I can’t speak to him about these things:

  1. Ants, we have never talked about your death or made funeral arrangements, so Ming and I have no idea what you want. We are seeing funeral directors next week with our various questions.
  2. You were like a dead person yesterday, but today you were back! I know you don’t know you are dying and I know you don’t even know you have dementia, but I also know that you know me/us.
  3. Every time, especially lately, that I think you are nearly dead, I get panicky and grief-stricken; then you come good again.
  4. Anthony, the other day, when I had my finger on your pulse, I did actually want you to die. I’m sorry, but you were unconscious anyway and I thought it would be easier.
  5. You are 80, Ants. I know you keep telling me you are 16, and asking where you mum is, and seeing baby Ming in every corner of your room, but then, all of a sudden, you are back in the here-and-now.

There must be a better way of caring for carers and I am very interested in helping in any way I can.

I want Anthony to live.

I want Anthony to die.

 

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Rollercoaster

I guess this is a ‘this-and-that’ post….

The other evening, one of our nephews rang to see how I was, and how Anthony was, and I got a bit weepy, so not long after, his beautiful wife arrived with a bottle of wine and she let me cry into her shoulder. Once I had recovered, we drank some of the wine and talked about what a wonderful man Anthony was/is etc., then she left.

Five minutes later, there was a knock on the door; her car was bogged on the driveway, so I went out to help but could NOT stop laughing and laughing, so I wasn’t of much use! In the end, my nephew had to come over with ropes to pull the car out of the bog. We’ve had a lot of rain and this farm is on the flats so what looks like steady ground isn’t.

When I told Anthony about this the next day, his placid face upturned into a smile – it was wonderful!

I quite like these rather bizarre incidents because humour is now crushing the sorrow out of the day-by-day experience of watching Anthony lose his bearings. Today, we had visits from other wonderful relatives but Ants was mostly sleeping and in bed, so I reassured the carers that him staying in bed was fine and probably much more comfortable at this stage. Today I also finalised the end-of-life documents, but it feels so surreal.

Ming has been writing an album of songs dedicated to Anthony but, this morning, he headed up to Perth for a two-day acting workshop. At 10am, he rang me to say he’d arrived safely and wanted to write a song for me – just me – called ‘Selfless’ and he told me that he thought I was the most selfless person he’d ever known. And then he said something about respecting me and it absolutely made my day! It is impossible to describe how much this kid/teen/man has helped out over the years; he is a legend.

Until now, I don’t think I have properly faced the death thing but, now that I have, I am more ready, I think!

Rollercoaster….

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Day by day

Today, Anthony ate his vitamised food well, was able to speak a bit, and smiled at my mother, who has recently returned from a wedding in Melbourne. It was while she was away that he had the TIA (mini-stroke) that really freaked me out and catapulted me into making funeral arrangements – mainly because he’d had another of these two days prior.

Even before the nursing home, Ants had had these mini-strokes and twice I called the ambulance and he was hospitalised. Both of these experiences were dreadful because he became so disorientated and anxious but at the time I didn’t know what a TIA was.

Today I spoke to one of the many lovely nurses at the nursing home to check with her if I’d signed the ‘not for resuscitation’ form. That was a yes. But I also wanted to check that I had signed off on the end-of-life form, so we are going to discuss/check this tomorrow because I don’t want Anthony hospitalised, or given a feeding tube, or any interventions that might prolong suffering.

Anthony doesn’t appear to be suffering but his feeling intensely cold during the day, and hot during the night (and I remember this from when he was still home), may actually be physical pain? I don’t know because he rarely complains. And even if he wanted to say he is thirsty – and he is suddenly thirsty constantly – his ability to speak is too diminished to express anything coherent to the carers.

He was always a larger-than-life person – loud, boisterous, the life of the party, and Ming (Menzies Goyder) is such a clone of Anthony. I love this!

And now, this evening, as I reflect on today, I realise that Anthony is also a larger-than-death person. Yes, he will probably die in the next few months or weeks but he will live on in so many hearts because he is so loved, by so many – not just Ming and me.

 

 

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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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Dysphagia and dying

Over the last few days, Anthony has been unable to swallow food in the usual way and has been spitting it out. I knew that one day this might happen; I knew that dysphagia (difficulty in swallowing) was a symptom of advanced Parkinson’s disease but I didn’t know it could happen so suddenly.

How can it be that last week he could eat a whole block of chocolate and this week he is spitting it out? Anthony loves food! I thought/hoped that it was just about him forgetting how to eat but, since seeing the speech pathologist today, we now know that dysphagia has arrived. From now on, his food will have to be semi-vitamised; otherwise he will choke or aspirate food/drinks.

So I guess we have now entered yet another new phase. No more tasty treats of the usual kind. It’s the food thing that makes me so sad but, as usual, Ants has accepted that this is the best idea.

Anthony has been so sleepy over the last few days that I keep feeling his pulse to see if he is still alive! I am in a constant state of high-alert in case he dies outside my watch; terrified but also prepared for his death.

At the same time, I am also prepared for a prolonged period of his suffering that I will have to witness. Anthony has already lost his ability to speak coherently, or above a whisper, and I hate that I have to speak on his behalf, but what else can I do?

Our chocolate days are over.

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