February | 2015 | jmgoyder

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.

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Dusk

by jmgoyder

I went outside specifically to take photos of the cheeky willy wagtails but of course they disappeared as soon as my clumsy presence was felt, so I just took photos of anything and everything. And they are not very good photos because, even though I have a camera or two, I am not a photographer.

So this is Blaze, son of Doc 3 (deceased):

And this is Jack, the Irish terrier, who was gentle until Blaze taught him to hunt which is why we no longer have any poultry:

Blue wren:

Flame trees from dog yard with one of our many Christmas trees somehow flourishing in the heat:

Blaze again:

Feeding time – that’s Gutsy9 in foreground:

The last figs:

And, just a moment ago, Ming’s best friends about to take him out on the town:

This afternoon I sat with Ants watching two episodes of our latest series, ‘Luther’ then came home around 5.30pm having told him, as usual, that I would be back later. I hate this lie but it works! When I leave Anthony in the late afternoon, or evening, and promise I will be back soon, I re-enter the reality of dusk on the farm, and a sense of peace. Of course I wonder if he will be okay as the carers put him to bed but, now that I am a staff member as well, I hear wonderful stories about his sometimes witty okayness with the way things are.

In the summer, dusk can be dusty here, but it is also rather beautiful in a dry way!

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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!!!

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Whispers

by jmgoyder

“If you listen quietly enough life will whisper its secrets to you”
― Rasheed Ogunlaru

Anthony’s dysarthria is getting worse. Dysarthria is difficulty in speaking and, in Parkinson’s disease, is caused by the vocal muscles not working properly. Except for occasional unwhispered flashes of eloquence (usually in response to visitors or staff talking directly to him and waiting for an answer), his voice now is mostly a whisper.

This means that over a period of hours, Ants and I may only speak a few sentences and that it is mostly me doing the talking. Sometimes I have to put my ear right next to his mouth to hear what he is whispering and often I still won’t understand and he will shake his head in resigned frustration.

At other times, Ants may form meaningful words into sentences that to me are indecipherable. As a result my mind-reading abilities are improving and usually I will be able to figure out what he is saying. Sometimes, of course, the sentences do make sense syntactically, but not semantically, for example when he asks me to move the calves outside his window.

It may be a long way off, or it may be soon, but eventually Ants may not be able to speak at all so I am preparing myself for that possibility by writing down the things he does say as well as the things that I say that trigger his half-smile. I am a bit scared though because his facial expression is mostly pretty frozen (another PD thing) so it may be hard to ‘read’ him.

The contrast between this whispering Anthony and the loud, bellowing, laughing person he used to be is acute but I refuse to allow this to be heartbreaking, and I refuse to revert to the fug of despair I felt so long ago that I hardly remember its blah. There is nothing heroic about this newfound attitude; it’s a matter of pragmatism and survival I guess.

There was a period of time way back when Anthony’s inability to smile spontaneously, coupled with my down-in-the-dumpness, made my visits to him sad and difficult and I would come home in tears. But now it is so wonderful because I look forward to seeing Ants, almost like the teenager-in-love I used to be, and evoking this new half-smile from him easily now, and often, is fantastic fun!

That half-smile highlights our days and Anthony’s whispered “I love you, Jules” makes me feel like the luckiest woman in the world. I so admire his resilience, acceptance and unsadness in the face of this horrible disease. His fortitude and courage continues to amaze me. He is not just my hero; he is a hero of Parkinson’s disease and I salute him.

And every whisper is a weapon against the impending silence.

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Feb 24

A sublime sense of space
by jmgoyder

Dina, from Chaos to Clear https://www.chaostoclear.com.au/gallery.html came over this morning to help Ming tackle this:

Some of the stuff in this particular area was paperwork that I either didn’t know what to do with, didn’t recognise, and didn’t even remember putting there. But most of it was Ming stuff – lego (and lots of it!) brio trains and tracks, and a whole lot of other ‘things’ from Ming’s childhood. As this was Ming’s first experience of decluttering his own stuff with Dina, it was interesting to see his initial reluctance transform into a very healthy ruthlessness and we filled four garbage bags and two boxes with rubbish to be taken to the dump – wonderful! It was also quite moving to see what he was still sentimental about:

While this was happening, I sorted all of my plastic containers, got rid of all my old cook books and only put the Aga cook books in the kitchen drawer, and put all of the paperwork we found into the filing cabinet that is now functioning as a proper filing cabinet thanks to Dina’s labels. Bliss!

For me, the sense of space that has been created is the most wonderful thing! I have never known a cupboard, shelf or drawer in this house to be empty before so I am having a lot of fun thinking about how I can use these empty spaces. Wonderful!

And this is the beauty of Dina’s service; she helps you to cull, but she also helps you to put the things you want to keep back into the new spaces. Dina is way more organised than I will probably ever be, but she has given us such wonderful help and tips and sympathy!

She has also given us her friendship and is even happy to come and help me take Anthony out on occasion. Thanks again, Dina, for your tact, efficiency, respect and empathy. You are a wonder!

We even have a box of stuff to go into the nursing home.

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Feb 23

The loop of loss and longing
by jmgoyder

Tonight I came home from my shift at the nursing home (which is now from 3-7pm) feeling terribly sad for one of the residents, B. She had been taken out by her daughter for fish and chips with some of her family but when she and her daughter returned, they were finishing a conversation which must have begun on the drive back and B, referring to her deceased husband, was saying things like, “So R is gone is he? I see … And I can stay here can I?” The grief and confusion in her beautiful face was a stark, mottled blush and her eyes seemed to be looking inward, grappling with the enormity of her bereavement. We – the staff – sat her down and reassured her and her daughter left.

I was already sitting at a table with two other residents, looking at magazines and a bird book, so B made a fourth. She was uncharacteristically quiet and still. I gave her a magazine, a hug and a cup of tea and she eventually said, “It’s hard when you lose someone and you’re all alone.” I squeezed her hand and said, “I know how it feels a bit, B, because my husband is in a nursing home.” With that she looked at me with eyes full of empathy and she enclosed my hand in both of hers. “I’m so sorry darling, that must be terrible for you.” Her sympathy amazed me since she had just heard about her husband’s death for the first time (of course it is not the first time in reality) and she seemed to be in a bit of shock.

But, less than 15 minutes later, as B finished her cup of tea, she asked the same questions she asks over and over and over again, “Do you know where is R? I need to be getting home. Can you give me a ride? He’ll be getting worried won’t he?”

Most staff go with the flow and reassure B that R will be here soon, or that he said it’s okay for her to stay here for the night. It is sometimes very hard to know what to do to comfort B because she is constantly on the move, ready to go home. She is mobile, articulate and always immaculate, but so terribly confused and anxious. A couple of the staff will gently remind B that her husband isn’t here anymore and she will be shocked and grief-stricken but within minutes will have forgotten this and will begin again to ask where R is.

I wish I could figure out how better to comfort this woman who constantly asks for her deceased husband; it’s as if she is stuck in a never-ending memory loop of loss and of longing.

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Feb 21

Treehouse
by jmgoyder

It is surprising how much continues to grow, and even flourish, here, despite the fact that this is the third summer I have stopped watering any of the garden. For those who don’t know why I stopped, the reasons are four-fold:

1. Even though I have an endless supply of good, clean bore water, turning the hoses on activates a pump which translates into a very high electricity bill;
2. I am not the least bit interested in gardening;
3. After Anthony went into the nursing home, I didn’t care much about anything except his well-being; and
4. I was conducting a scientific experiment based on Darwin’s theory of natural selection.

Palms, aloe vera, frangipani, cumquats, bottle brush, figs and grapes (as mentioned in past posts), and many other trees and plants continue to flourish regardless.

Even the house is sprouting!

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Feb 19

Miscellaneous
by jmgoyder

One of the things I have had to do in all of the recent decluttering is to toss some things into a miscellaneous box to be figured out at a later date. Despite the fact that this box is getting rather full it is good to know that I have one place to put anything that I don’t recognise. I will hold the object out to Dina and say, “Do you know what this is?” (Usually it’s some sort of ancient tool – an artefact from Anthony’s past). If neither of us can figure it out, it goes into the miscellaneous box – perfect. Then it’s over to ‘the Ming’.

I thought it might be quite fitting to write a bit of a miscellaneous post, having discovered that ‘miscellaneous’ is a definite, and quite acceptable, category. So here goes:

Most of the grapes are ripe now and I can just pick them and eat them whenever I go outside. I think it’s just the one vine and the wild birds get to them as fast as I can so there is almost no point picking them. They grow just outside the back door and I’m not sure if Anthony planted them or if they were there before the family came here.

The figs are nearly finished for the year as the heat is getting the better of them – and the butcher birds (which Gar, Anthony’s mother, used to hate). Last year I just let most of them fall of the tree and frizzle in the sun but this year I have given many bags away to friends, family, the local pub, the restaurant where Ming works (my mother and I went there today for lunch and the fig and coconut muffins were a hit), neighbours etc. I have also eaten quite a few with Ants in the nursing home. I also went to another restaurant and asked if they wanted figs and they said YES and I asked what I would get in exchange, suggesting a lunch voucher and they said yes to that too, though a little less enthusiastically.

After lunch with my mother today I went in to the nursing home to spend some time with Ants before my 3 – 7pm shift in the dementia house. I had my camera with me so took some photos through his window of the outlook from his room. This garden area – one of many – is where he often ‘sees’ calves and often asks me to go out and check if they are all okay, which of course I always do and the calves are always okay.

Periodically, I rearrange or change the pictures on his walls. The photo of younger Anthony has pride of place very high on one wall where there happened to be a hook and he rather likes looking up at himself!

Me: You really like looking at yourself don’t you! Such vanity, Ants.

Ants: Men need to love themselves.

Me: Why?

Ants: In case nobody else does.

Okay I am kind of cheating here as the above conversation happened over a year ago. Ants doesn’t articulate so well anymore but he sure as hell likes looking at the photo and so do I. It kind of pulls us both into the time warp of when we first met.

Then there is the oil painting of cattle that I commissioned from an artist friend years ago; a calendar my mother made of moments/months in our lives (e.g.. Ming recovering from his first spinal surgery); and one of the few photos of Anthony and his mother in her latter years, that I had framed for him once upon a time.

Then I took a picture of the rose plant I gave Ants not long ago. Everybody has remarked on their blooms and many people, including Anthony, thought they were real until I finally had to own up to the fact that they were VERY expensive fake roses made of silk. Some people are still fooled though, especially when I spray them with rose perfume – haha!

Well now that all of the ancient rose trees on the driveway of the farm are either dead or dying, the fake rose tree seemed like a good idea. In my defence, I am hopeless at gardening and every time I water something the pump makes the electricity bill soar!

Just before 3pm, after watching Judging Amy with Ants, I went into his bathroom and quickly changed out of my t-shirt into my new uniform, put my name tag on and explained I was going to work. He always only remembers a bit of this new situation so I have to explain again that I am not going somewhere else but will be working just next door and that I might be able to see him a couple of times during my shift. This reassures him and whenever he gets anxious I just tease and tickle him into his new half-smile and all is well.

This afternoon it was a bit too humid to take many people for a walk outside or through the complex and it wasn’t until I took a teary S for a wheelchair walk that I saw Ants again (just as I saw many of the people in the high-care section as S and I did a lap of the gardens and hallways).

S. Who’s that old chap?

Me: My husband.

S. Not bad-looking!

Me: Keep your hands off him, S!

S. (chuckling and sticking her tongue out at me) All right.

Miscellaneous….

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Feb 18

Cat and mouse
by jmgoyder

Okay so we don’t have any cats (the dogs would eat them) and, at the moment we don’t have any mice (thank goodness), however now that Ming is 21 he seems to think he is the cat and I am the mouse. If cats are controlling and mice are meek, then perhaps he is right.

So, while ‘the cat’ was away for a few days, Dina and I decluttered and sorted my old office (including the four-drawer filing cabinet!) the bathroom, my bedroom (which was already okayish) and went through ALL of my paperwork which is now properly filed in the filing cabinet in actual files! I am a very happy mouse.

The only drawback was that I was under strict instructions from Ming to not go to the dump with the rubbish until he had checked I wasn’t throwing anything out that he might want. This happened two weeks ago and the ute was so full it took him ages but he only found two unopened toothbrushes so I was just given a little claw pat and off I went to the dump. Now we have a second ute-load of rubbish which I plan to add to today while Ming is at work.

On his return yesterday he went through this second lot of rubbish while I was in town and when I returned in the early evening his expression was grim. My little mouse voice quavered:

Me: What have I done now?

Ming: I’m a bit hurt, Mum, but it’s okay.

Me: Did you find something on the ute that you wanted? Oh no!

Ming: You are being too ruthless. I think from now on I really need to be here to make sure you don’t do the same thing again.

Me: Just let me get out of the car and come inside.

Ming: Yes, we should talk about this.

…….

Me (seated with a fortifying glass of wine): What did you find?

Ming: Like I said, I’m okay about it now, Mum, but it’s taken me a couple of hours to get over it.

Me: Just tell me….

Ming: You threw away my Mother’s Day card to you from last year.

Me: OMG Ming I’m so sorry! I was really careful to put all of the sentimental stuff into the sentimental box. I don’t know how I missed that. Did you retrieve it?

Ming: No point, Mum, you’d ripped it in half.

Me: What? No way. I must have thought it was something else!

Ming: Just don’t let it happen again. Please put everything you are uncertain about into a corner where I can go through it myself. I don’t trust you.

Me: Okay, darling. Sorry. Do you want a hug?

Ming: Maybe a bit later.

Cats can be cruel but mice can be mischevious so, while he is at work today I will very quickly chuck the crate of his primary school drawings onto the back of the ute. After all, even though he was a prolific artist at 5, he wasn’t Picasso.

On second thoughts maybe I should wait for him to come home and check first! In the meantime I will put all of the stuff he wants to check into the corner for Captain Cat to sort out himself.

This mouse is feeling the mirth!

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Feb 16

Dreams
by jmgoyder

I have various versions of the same dream once or twice a week. In the dream Ants and I are on a holiday somewhere, a long way from home, and a long way from the nursing home. We are either at some sort of luxurious resort or at a wedding, and familiar family faces come and go from each dream version. Everyone is always aware that Anthony is very ill and often he is in a wheelchair. The strange thing about this dream is that its evening is suddenly punctuated by the horrifying fact that I have forgotten to bring his many pills and it’s too late, and too far, to go back and get them. But then an even stranger thing happens. He gets up from the wheelchair and walks around talking and laughing and socialising and I realise he doesn’t need the pills! Another recurring dream I have is that we are on the brink of getting married but he gets cold feet and the wedding is called off and I am broken-hearted. Whenever I wake up from this dream I am filled with relief that it was just a dream but then I look over to his side of the bed and am hit with the jolt of his absence. On these days I usually go into the nursing home earlier than usual. This morning Dina (my decluttering friend) and I cleared our fourth room – a little room at the back of the house that I once used as an office. It was filled with books, papers, some of Ming’s ‘stuff’ (which seems to be in EVERY room!) and I didn’t think we’d even get to the filing cabinet which was also full of bits and pieces. But we did! All legal documents are now in one place; jewellery in another; photos in another; and Ming’s bits and pieces in another, ready for him to sort out with the help of Dina. Now a little myth I need to dispel: Dina does not chuck stuff out; she simply hands it to me and I make the decision as to whether it’s worth keeping or chucking. And I am getting very good at chucking! Periodically she asks (she is so considerate!) if I am okay which is a fair enough question as some of the bits and pieces we find plunge me into a kind of nostalgia, but it’s mostly a happy nostalgia. If it isn’t, it goes in the rubbish bag – wonderful! As we declutter, categorize and cull, my mind unfurls its tightly-wrapped knots of confusion and clarity seeps back in.

Interestingly, I now have another recurring dream. In this dream, the house returns to the way it was before Anthony became so ill: spotlessly clean, tidy, organised and beautiful. But, for the first time ever, it will be my house too – less cluttered with ornaments and free of hoardings. I could never do this kind of thing when Anthony was home because he was sentimental about everything, even his father’s old dressing gown! And he wouldn’t like what is happening now but he doesn’t know so it doesn’t hurt him. I would never hurt him. And, thanks to Dina, this dream is coming true.

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