jmgoyder

wings and things

A back-stepping narrative

It is the first day of another new year and I have made the decision to use this blog as a test-run for a book about the personal journey Anthony and I are still experiencing with PDD (Parkinson’s disease dementia). Having printed out thousands and thousand of pages of blog writings (over five years!) my initial idea was to go back to the beginning but, at the moment, this is too bittersweet and the nostalgia of ‘wings and things’ is ironic as most of our winged creatures have been re-homed. I think this is significant in our journey but I am not sure how yet. I guess, in losing those winged creatures, I have learned how to deal with loss, and sometimes with death.

To write a book about PDD, with a specific focus on Dementia, seems ambitious, but I really want to do this in order to demystify this mysterious disease. Another reason to write a book like this is to demystify the nursing home experience and to honour the carers.

When I left Ants today to come home, he tried to get up from his armchair several times, so I explained to him again and again that I had to go to work. He wanted to accompany me and kept saying “I don’t understand what’s going on, Jules.”

To leave him like that is ghastly and I worry of course. But I know he is in good hands and I know that tomorrow he will be fine again and happy to see me.

Happy New Year!

 

 

 

 

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Resting

I decided today to take another extended blog break. Instead, I want to concentrate on getting previous posts about Anthony’s Parkinson’s disease dementia into the form of a publishable book, or, at least, a series of publishable articles.

Most bloggers can relate to the need for a rest and I have been slackening off for ages, hardly reading anybody’s posts, not responding adequately to comments etc. despite how grateful I am for feedback.

To take a break from blogging will give me a rest from a self-imposed need to share. I think the Dementia Dialogues are important and I will continue to record and write those, but not publicly until next year.

Today, after Ming voiced his typically loud philosophising in Anthony’s nursing home room, Ants whispered “I know exactly what he means” but we were unable to get him to elaborate further.

I briefly jostled with Anthony, pretending to turn our hand-holding into an arm wrestle….

Anthony: Don’t! You might hurt me.

Me: Stop being so ridiculous, Ants – you’re not that delicate!

Anthony: Yes I am.

Me: What happened to the macho machine I married?

And then, without a beat, Anthony said, “He retired”.

So, with Anthony retired, and me taking a rest from blogging, it’s now Ming’s job to keep our story going.

In the meantime, Happy Christmas!

 

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How to have an amazing conversation with your 22-year-old son.

Listen.

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Ming!

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Dementia and onions…

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Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.

 

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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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GRRR!

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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testing

testing

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Not blogging for awhile but everything is fine!

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