jmgoyder

wings and things

Aug 21

Rollercoaster 2

by jmgoyder

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.

 

Alzheimer's Disease; Dementia Anthony Australia babies Family Friendship Grief Humour joy LOVE STORY nursing homes Parkinson's disease dementia

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Aug 20

Rollercoaster

by jmgoyder

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….

Alzheimer's Disease; Dementia Anthony Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Aug 17

Day by day

by jmgoyder

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.

 

 

Alzheimer's Disease; Dementia Anthony Australia blogging Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Western Australia

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Aug 13

Forewarned is forearmed

by jmgoyder

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.

 

 

Alzheimer's Disease; Dementia Anthony blogging depression Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Uncategorized

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Aug 12

Planning a funeral

by jmgoyder

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.

 

Alzheimer's Disease; Dementia Anthony blogging Family Friendship Grief Happiness Humour joy LOVE STORY nursing homes Parkinson's disease Parkinson's disease dementia

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Aug 9

Incoherence

by jmgoyder

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.

 

 

 

 

Alzheimer's Disease; Dementia Anthony Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Aug 4

Flights of fancy

by jmgoyder

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.

Alzheimer's Disease; Dementia Anthony Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Western Australia Wings

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Jul 30

Comfort

by jmgoyder

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.

Alzheimer's Disease; Dementia Anthony Friendship Grief Happiness Humour joy LOVE STORY nursing homes Parkinson's disease Parkinson's disease dementia

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Jul 11

GRRR!

by jmgoyder

It was hilarious the other day when Anthony’s favourite nurse was teasing him about something and, all of a sudden, he surprised us both by growling at her!  He launched himself out of his usual slump, met her nose with his, and said, very clearly “GRRR!” This resulted in all three of us laughing.

This kind of banter is, I think, what keeps Anthony on an even keel, emotionally. And the fact that this particular nurse is familiar to him is vitally important in terms of his health and well-being.

Oh how much I hope that this nurse doesn’t leave! If she even hints at that possibility, I may have to send her a “GRRR” of my own!

 

 

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Jul 2

Nothing/everything has changed

by jmgoyder

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.

Alzheimer's Disease; Dementia Anthony blogging Family Friendship Grief Happiness LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia

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