Ming | jmgoyder

So much for the autumn hiatus!

by jmgoyder

Well my autumn hiatus didn’t last long did it! Neither did my ambitiousness haha! I had another look at the full-time behaviour consultant job description and realised that although it seemed a perfect fit for me, there is no way I could do it and keep my job at the nursing home. More importantly, there is no way I could do it and spend enough time with Ants. I did email the association asking if it might be possible to job-share the position but I haven’t heard back yet. There was a public speaking/teaching component to the job but there were also a lot of administrative duties (of people and paperwork and policies) and the latter does not appeal to me in the least! I’m much better at being bossed than being a boss.

So that’s that for the time being – maybe down the track I will do something like that but in the meantime it’s back to writing, including blogging, for me. And I discovered a wonderful program yesterday that will convert your blog into a PDF document and it’s called blog2print. In just an hour or so and for less than $100 I was able to convert 2000 pages of blogging, from 2011 to now, into seven PDF documents inclusive of photos. For more money the program will also convert your blog into a hard cover book, or books, but I didn’t want that because I want to be able to edit and revise and rewrite all those blog entries into a book about our personal experience with Parkinson’s disease and dementia. I had already begun the tedious job of copy/pasting bits into a word document but it was taking forever partly because of having to read the blog backwards and getting confused with dates etc. It wasn’t until I googled “how to turn a blog into a book” that I discovered blog2print and other programs that will do what would take hours and hours manually in just a few clicks – extraordinary!

Anyway this discovery also reminded me of how much blogging has become a part of my life. Not only is the camaraderie between bloggers a fantastic source of joy, but if I hadn’t written all of those posts I never would have remembered the chain of events of the past few years. I guess what I’ll do now is to print it out in 50-page sections and do the hand-written editing in the nursing home with Ants, then come home and finish the job on the computer. That way I can add material retrospectively.

Also, in anticipation of a blog break, I suddenly felt quite bereft! It is such a great way of keeping a record of things that can easily be forgotten – especially conversations both with Anthony, the women in the dementia house, and with the Ming.

For example, he rather reluctantly came to find me at work the other day and I let him into the dementia house and introduced him to the ten women who he proceeded to charm easily, simply because he is a male, and young! Oh I am so relieved not to be going for that behaviour consultant job. I work this afternoon and I can’t wait! I have never felt like this about any other job and I am very much ‘at home’ in my OT role now. Even though none of the women remember me, I am greeted with welcome smiles and the oft-repeated “Oh you look so familiar. Have we met before?”

Anthony doesn’t remember who any of the staff are either and the other day introduced me to one of the carers by saying to her: “Have you met my wife?” She and I exchanged a grin and a ‘yes’; after all, we have known each other now for over three years.

Blogging helps me to remember and record these tidbit gems, these moments of pleasure and humour in amongst the pain of illness and age. And autumn is a good time to write and be because it is too rainy to go for a bike ride, Mr Tootlepedal!

It might also be a good time to convince Ming to get himself some new shoes.

blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

35 Comments »

Autumn

by jmgoyder

My clouds hug the sky

cockatoos caw out their joy

and the rain giggles.

Just a little haiku to celebrate our autumn. Every evening when I leave the nursing home, I drive past a spot on the edge of town where hundreds of white cockatoos fill the trees like giant snowflakes, and create a raucous cacophony. They are so loud, it can be alarming if you don’t know what the noise is but I love it! I am not quite sure why there are so many in that particular spot as there are none on the farm; there are plenty of other parrots here but not the white ones. Interesting. Well it is finally raining and the brown paddocks will soon be green again! The faltering wormwood will come back to life, the five acres of lawn will need mowing around the house and everything that looked dead will be reborn (okay, except for most of the roses!) The wormwood hedge stretches from where the house is right back to where Ming’s shed is. I remember the days when Anthony trimmed it, then the days when Arthur trimmed it, then the days when Ming said he would trim it, and the days when I thought about trimming it, but, alas, all of those days are gone. Autumn seems a good time to take another blog break so that I can concentrate on some other projects including applying for a job as a behaviour consultant with a local Alzheimer’s Disease organisation. It might happen and it might not but it would be a wonderful opportunity to share some of the lessons I have learned about dementia and communication over the years, including what is happening right now with Anthony and me. It is very hard to see someone who used to be the life of the party reclined crookedly in an armchair in a nursing home. It is also very hard for me to find the words to adequately express how much I love this man, my husband, Anthony, without resorting to cliches. Hence the concluding haiku:

My sky hugs your clouds.

The birds are oblivious.

You hold my small hand.

Animal Australia Birds blogging Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia Wings

57 Comments »

Going, going … gone!

by jmgoyder

Here are some ‘before and after’ photos of the inside of the two sheds that Dina, her assistant and I cleared the other day:

Shed 1:

Shed 2:

I asked the lovely woman who runs a local heritage park/museum to come out this morning to see if any of the bits and pieces were of interest. She arrived with the man who helps manage the park and they inspected the ‘goods’:

After some mulling and very interesting chats about what some of the once-upon-a-time objects were, the heritage park people picked out a few items of interest for which they were willing to pay, then, with the Ming’s permission (of course!) took most of what you see in the photo away and gave us double the price we would have received from a salvage yard. Brilliant!

At the same time, Dina was here for her last big job with us which was to finish decluttering Ming’s shed/home. Unlike the other day, with the filthy-old-sheds-job, she didn’t have to wear her astronaut costume.

At the conclusion of Dina’s work with Ming today, we chatted over coffee and were all a bit sad that this massive job had more or less come to an end. Now that she’s finished, I feel a bit lost in the ghostly space of things gone, not because I miss the things but because I am going to miss Dina’s regular visits and the euphoria of getting so much done!

One of the most interesting aspects of her service is her summaries and here is an example:

Goyder Services Summary Veranda & Kitchen PDF

I now have several of these summaries that span the two mornings per week, over two months, in which Dina has helped me to move forward. The ‘before and after’ photos in these summaries, and the summaries themselves, are a unique part of her service and a source of joy to me!

Going = rubbish tip (around ten ute/truck-loads now!);

Going = given/sold to interested people/family;

Gone = the feeling of being overwhelmed!

Thank you Dina – ps. Can you help me with the odds and ends left from our work so far?

Animal Australia blogging Embarrassing moments Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia Wings

37 Comments »

The gifts

by jmgoyder

Well I got my bangle! On our 23rd wedding anniversary a couple of days ago, I rushed in to the nursing home with my gift to Anthony of two bananas and asked him if I could have a silver bangle to add to my collection.

As he consumed the bananas, he looked at me quizzically and asked one of his daily questions: “How much money is in the bank?”

I gave him an inflated estimate and he said, “$3,000, but it has to be a two-door, not a four-door.”

“What the hell are you talking about?” I said.

“The Torana,” he said. [Long story – he used to have a Torana A9X which we unfortunately sold before it became a valuable collector’s item and recently our friend, D. had brought him some laminated photos of the vehicle + a couple of Torana magazines.]

“I’m not talking about a car!” I exclaimed, “I’m talking about a silver bangle!”

At the same time my mother arrived with anniversary presents for both of us – a beanie she’d knitted for Ants and a packet of my favourite cheese, Jarslberg, for me.

“Make sure you get a really good one,” Anthony said when he realised I was talking jewellery, not automobiles.

So my mother and I went downtown to the special jeweller’s whose shop I would visit once a year after Ants got so ill, Baroque, and I immediately fell in love with this!

I asked the jeweller for a massive discount on the basis that my husband was in a nursing home and it was our 23rd wedding anniversary, and he naturally obliged. “Done!” I said much to my mother’s ~~shock/horror~~/delight.

Then we went back to the nursing home, me with my new bangle on, to show Anthony who thoroughly approved of it and my delight and gratitude. After that I went around showing all staff and residents many of whom came into Anthony’s room to congratulate us both and to admire the bangle. It was such a buzz and Ants was thrilled. (The fact that I will have to sell all the old bangles to pay for the new one is beside the point – ha!)

It isn’t very easy anymore to get that whole exciting buzz thing happening with Ants, despite the fact that his ability to smile has come back. But the adrenaline of a bit of frivolous over-spending was just the sparkle we both needed.

One of the most beautiful things about Anthony is the joy he gets out of giving me something. Ming, on the other hand, was thoroughly disapproving of such extravagance!

Family Friendship Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

60 Comments »

Priorititis

by jmgoyder

Ming and I have very different priorities which is not unusual in a mother and son relationship. This means that he has had a rather bemused, and sometimes annoyed, attitude to the last few weeks of what I have decided to call my “house to home” project. And, due to his man-of-the-house attitude we have had a fair few power wrangles.

So I didn’t tell him that I had booked a lovely couple who run a business called ‘Household heroes’ to clean the windows inside and out. When I accidentally let it slip that they were coming on Monday, he became angry and this was our rather fraught conversation:

Ming: Why didn’t you tell me?
Me: I thought we agreed last week that I was the boss.
Ming: Well, why didn’t you ask me to do the windows? I should be doing it!
Me: Because you’re working full time and actually I think I did ask you.
Ming: No you didn’t!
Me: Well, maybe I hinted that we could do it together?
Ming: Why don’t we then?
Me: So do you want me to cancel the window cleaning people and we do it ourselves tomorrow?
Ming: But tomorrow is my day off! I want to have fun!
Me: In that case, could we do it together next week?
Ming: What’s your problem with the windows anyway, Mum?
Me: They’re dirty.
Ming: So?
Me: I want them to be clean.
Ming: Why?
Me: Because they always used to be clean and now they have been dirty for three years!
Ming: So?
Me: Okay so you want me to ask you to help me with the windows but you don’t really want to and you don’t care that the windows are dirty?
Ming: I don’t care at all!
Me: In that case, I won’t cancel the window cleaners, okay?
Ming: Fine then!

Yes, Ming and I have quite a lot of these circular conversations but, in the end, we can usually stifle our different priorities in order to watch Game of Thrones in the evening.

So the window cleaners came on Monday and did the most fantastic job over nearly four hours, Dina and I decluttered the wash house at the same time, and Ming skedaddled!

The following photos are not remarkable in themselves; what is remarkable is that they are all taken through clean windows. Hurray!

The thing is, I do understand Ming’s feelings of alarm at all of this tidying up because I guess he has become used to a mother (me) who has been sort of stuck for so long that he has forgotten the lightning speed with which I used to get things done – ha!

And tonight he is making dinner for me! Hopefully this will become a new priority for the Ming – gotta love him!

Australia Family Happiness Humour LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

41 Comments »

The Anthony book

by jmgoyder

I am finding it extremely tedious and time-consuming (and a bit traumatic) copy/pasting bits of my blog into a possible book about our journey into the land of Parkinson’s so I’ve decided instead to begin to write the story afresh. Going back to the sadder blog posts is only making me sad whereas writing the story with the benefit of hindsight, and from a position of acceptance seems a better way to approach the project. The blog posts are a reliable historical record of events so I can always refer to these, and even quote myself (weird!) if need be.

I don’t want the book to be in any way academic because my last book, We’ll be married in Fremantle, was a rewrite of my PhD thesis so didn’t quite get the interest (or sales!) that it might have if had been marketed differently. For instance, the title of that book in no way indicates that I was writing about Alzheimer’s disease and about how to appreciate the storytelling abilities of sufferers.

Rewriting something seems to me a bigger task than writing something from scratch; rewriting the thesis as a book was a very long process (two years!) so I don’t want to have to do the same kind of rewriting thing with the blog. I have a bit of a problem at the moment with the whole re thing!

Instead, what I want to write is a book that is partly auto/biographical, partly how-to, and partly humorous. I want each chapter to incorporate each of these attributes and to work as a stand-alone essay/story.

Today I saw the biggest smile I have seen on Anthony’s face for a long long time and the carer who came into his room to give him his pills was astounded! He has almost begun to grin again now – incredible! Is my conjuring of daily smiles actually improving the muscle function in his face? If so, maybe some scientific person could research this and send me the findings ha! Hint to the Michael J Fox foundation….

The Anthony book will not be a very big book because I don’t want to repeat stuff that everyone already knows about the hardships of disease and caring etc. I just want to write, in the same personal style I use in this blog, about our slant on the more difficult dilemmas Ants, Ming and I have faced, in the hope that this will be helpful to someone/anyone!

Here is my chapter plan so far:

1. Thinking about the unthinkable (diagnosis shock, incontinence, fear of nursing home possibility)

2. Losing the love story (how having to care for someone takes its toll and affects relationships – Ming’s perspective useful here)

3. Hiding (carer withdraws, escapes, becomes workaholic in her job in order to avoid husband’s constant needs)

4. It’s not just all about you! (finding some sort of balance between young and old, sick and well, angry and happy, sad and funny etc.)

5. Lost and found: Anthony’s smile.

Anyway, that’s what I have come up with so far in terms of structure and content and any feedback appreciated!

Australia blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

30 Comments »

Mar 5

Values
by jmgoyder

On Tuesday, Dina and I arranged all of the stuff I wanted valued onto two tables ready for the antique guy, Mike, to value and/or purchase. When he arrived, introductions were made and he got his little eye-magnifier-thingy out and began what ended up being over four hours of a fascinating adventure into the history and mystery of everything from chinaware to silverware to walking sticks to coins etc.

Every time Mike said “Oh, you know what this is?” or “Now that is beautiful!” I felt quite chuffed. As Anthony was/is an antique enthusiast and, to some extent, a collector, it was interesting to find out what the things he had bought, or we had bought together (prints/lithographs; a piano stool, the grandfather clock, coins/banknotes, a silver egg coddler, willow pattern china, a Gallopili photo, etc.) were actually worth.

As the three of us went through the wares, I wrote down what things might be worth and what Mike would pay me for items he was interested in. Anything chipped or cracked was either discarded or put into the garage-sale box; most of the silver-plated and brass goods were deemed low in value as nobody wants to polish anymore. Mike wasn’t interested in any of that so Dina and I put these items onto a separate table for me to sort out later.

Interestingly, it was the little tangled-up trinkets plus my grandmother’s collection of Royal Doulton teacup sets, that had more value than the bigger, more impressive-looking objects! I sold a few of these to Mike but kept this one (see the peacock?)

Family heirloomy stuff for Ming went straight into my now decluttered office at the back of the house; give-to-relatives stuff went into a couple of boxes; stuff to keep (because I love it) will go back into the living room; garage-sale things ended up in several boxes!

Call me mercenary but I had not wanted to give away or sell anything that might be worth a fortune so, thanks to Mike, I am now in the position of being able to give/sell things more cannily – ha! And it is almost a relief to know that none of this clutter is particularly valuable monetarily.

This means that I can now retrieve the objects that have/had sentimental value for Anthony’s mother, Ants, Ming, my own mother and father, and me … and put them back on display. I particularly like the silver and brass because I can remember polishing it with Anthony’s mother, Gar, and then with Anthony. I haven’t polished any of it for some time so will not take a photo until I have, but it is beautiful!

Towards the early afternoon, as Dina and I sorted things according to Mike’s valuations, I remembered to show him the coin I’d bought for Anthony in the Christmas of 2000. It is a one-kilo silver coin produced by the Perth Mint for the year of the dragon – absolutely beautiful and very heavy. Mike was impressed and suggested I do a bit of research into what it might be worth now (I paid $600AUS at the time).

Well, after doing a lot of googling and ebay-scouring and general research I found out that this particular limited edition coin is now worth up to $5,500! People appear to be selling them at lower prices than this, but it is interesting and rather wonderful to find that this random Christmas gift has turned into a worthwhile investment and I feel quite clever.

You should have seen Anthony’s face when I took the coin in to show and remind him, and tell him its value had increased so markedly. He actually grinned! Money does that to him.

Later that day, I was telling Ming about how it all went and he was a little nonplussed at my thrill. But, just as I was about to put Gar’s plastic tomatoes, which have hung in the kitchen for over 50 years, into the bin, Ming yelped “Nooooooo!” So they’re freshly washed and back where they were!

It is now the fifth week of my experience with Dina, who has helped me to declutter, reorganise and create space where there was chaos. I have discovered, in this process, that I can do such things without the anxiety of Anthony’s hoarding, my sentimental attachment to objects that just made me sad (eg. a pair of glasses once worn my my father), Ming’s fickleness. There has definitely been a bit of a power struggle between Ming and me but I have now reasserted my authority haha!

I have learned so much about the notion of value and it has got absolutely nothing to do with things. Of course I already knew that but the reminder has been wonderful!

Animal Australia Birds Family Friendship Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia Wings

44 Comments »

Mar 1

Writing
by jmgoyder

It has been a very long time since I have had anything published, which is probably due to the fact that it’s been a very long time since I have submitted anything for publication, which is probably due to the fact that it’s been a very long time since I have written anything new. Sigh.

Of course I realise that blogging IS writing and I am very grateful for the fact that I have kept some sort of written record of the last few years’ events via this blog. And I am also grateful for other bloggers’ support. However, I am frustrated with my writing self in that I STILL haven’t put together a manuscript about Ants and Parkinson’s disease. I have begun the process of copy/pasting blog entries into an manuscript but it is quite tedious work as I have to do this post by post by post, get rid of the photos and ensure the dates are correct. I’m doing this but am still in 2012!

And now that I am spending many hours of most days in the nursing home, where this kind of job is impossible due to internet connectivity and my own iPad ignorance, I find myself slackly watching series with Ants, and always quite tired! Not that this time with Ants is wasted; it is brilliant to be together but when I began to do a crossword today (for me this is what old people do – no offence to older readers) I realised that I had to make better use of this time than pass it in such a passive way.

So, I am going to retrieve the notebooks from the top shelf of Anthony’s cupboard and begin to type our conversations out (the ones I began to jot down before he became so quiet). I can do this on either the iPad or the laptop as neither will require the internet.

I can easily put aside all of the things I don’t do very well: photography, acrobatics, raft-building, gardening, cartooning, etc. etc. because I know I can do one thing really well and that is writing. I want so much to write something meaningful and moving and encouraging for those who are afflicted with Parkinson’s disease, and those who care about them/for them. I want to write unsentimentally about the pragmatics of hope and care and comfort, beginning with Anthony’s story.

Writing.

The irony of my one and only published book (about Alzheimer’s disease) is that I had no idea, at the time, that my own husband would one day look at his windowsill and ask me to get the dog out of the room.

http://www.fremantlepress.com.au/books/1039

blogging Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Wings

45 Comments »

Feb 28

Gutsy
by jmgoyder

Gutsy, or Gutsy9, our pied peachick/hen, turned two last November. Anyway, she has now assimilated into our flock of peafowl but the others are still in awe of her audacity. If I leave the back door open even for a few seconds G9 will not hesitate to come into the house. This morning, for example:

She is often outside one of the four doors to the house, wanting to come in.

Or posing outside; yes, she is quite the poser and always has been.

Sometimes she still tries to fly up onto my shoulder but she’s a bit big for that now so I usually sit at one of the outside tables and she jumps up and lets me tickle her under the chin or stroke her head feathers. I wish I could take her into the nursing home to see Ants but it would probably freak her out now (not to mention the staff!)

Oh well, I can always show Ants the photos – the old and the new.

In the following photo she is resting on Anthony’s arm in the nursing home (2012).

And in this one, she is looking up at him during one of his last visits home (early 2014).

G9 has been, and continues to be, a very important addition to our lives. As many of you know, she was a bit of a foundling, rejected by her mother (whose identity I still don’t know) possibly because she is half white and half blue (‘pied’) and she has a very crooked toe on her left foot. Raising her was a learning curve for me because I had to take her everywhere with me during those first few weeks of her life, either in my pocket or underneath the collar of my shirt – a shock of course to anyone who spotted her. The funniest of these occasions was when I met friends for lunch at a restaurant and she poked her little head out of my shirt.

In many ways, G9 represents the years of our transition (Anthony’s, Ming’s and mine) from Anthony being home/coming home to Anthony being in the nursing home permanently. It is now the beginning of his fourth year there which somewhat flabbergasts me as he has outlived his advanced prostate cancer now by years. It is the Parkinson’s disease that so incapacitates him. He is now (and has been for some time) a ‘two person assist’ meaning that it requires two carers to get him out of bed/chair to toilet/dining room etc.

It’s a peculiar comparison perhaps but G9’s adorability, tenacity and head-held-highness resembles the way Anthony is coping with his situation. He is never depressed, rarely complains and is able to glean joy from the smallest of things; my presence in his room; freshly picked flowers; the domestic staff’s attention to detail; food (the lunchtime roast, my gifts of blue cheese and cherries); the occasional brandy; a soft blanket pulled up around his arms (yes, even in the heat of summer!); quips and humour from carers; slapstick comedy via Ming and me; and the pot of fake silk roses I gave him some time ago that everyone admires.

G9 is gutsy, yes, but Ants is gutsier; Anthony IS Gutsy.

Animal Australia Birds Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia Wings

27 Comments »

Feb 26

The rule of “good morning!”
by jmgoyder

Ming is so funny. If I forget to say ‘good morning’ he gets absolutely furious! For example:

7am: Ming gets up, gets his breakfast and turns the television on.

7.15am: I get up, put the kettle on and turn my computer on, remember I need to ask Ming to help me figure out an email glitch. I go into the living room where Ming is munching his cornflakes.

Me: Do you reckon you could help me figure out this email thingy?

Ming’s face contorts with fury.

Me: I mean not now but when you’ve finished breakfast. Plus the shower is still blocked – we need to get a plumber and….

Ming: WHY DO YOU DO THIS, MUM?

Me: Do what?

Ming: BEGIN THE DAY WITH STRESS!!!

Me: I’m not….

Ming: AND JOBS!!!

Me: Sorry but….

Ming: WHAT HAPPENED TO ‘GOOD MORNING’?

Me: Oh, I see. Good morning, Ming!

Ming: IT’S TOO LATE FOR THAT NOW, MUM, IT HAS TO BE THE FIRST THING WE SAY!!!

Me: You’re absolutely right, Ming, I just forgot.

Ming: NOW WE HAVE TO START THE DAY ALL OVER AGAIN!!!

Me: Okay, I’ll just go out and come back in again.

Ming: GOOD!!!

I go out and come back in.

Me: GOOD MORNING, MING!

Ming: GOOD MORNING, MUM!

Me: Okay, so when you’re finished eating could you help me to….

Ming: ARGHHHHHHHH!!!

Australia Family Friendship Happiness Humour joy

64 Comments »

«Older Entries

Newer Entries »