jmgoyder

wings and things

The rule of “good morning!”

IMG_4140

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!!!

64 Comments »

Whispers

“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.

weights 2

54 Comments »

A sublime sense of space

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

IMG_4268

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:

IMG_4335

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!

IMG_4338

IMG_4327

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!

IMG_4328

IMG_4332

IMG_4330

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.
IMG_4336

53 Comments »

Treehouse

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.

IMG_4308
IMG_4315
IMG_4310
IMG_4321
IMG_4303

Even the house is sprouting!

IMG_4319
IMG_4318

19 Comments »

Miscellaneous

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.

IMG_4172

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.

IMG_4245

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.

IMG_4282
IMG_4286

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!

IMG_4293

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.

IMG_4295

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!

IMG_4290

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!

IMG_4170

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.

IMG_4298

Miscellaneous….

43 Comments »

Cat and mouse

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.

IMG_4265

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.

IMG_4268

This mouse is feeling the mirth!

50 Comments »

Dreams

1995 060 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! IMAG0084 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. DSCN2070 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.

36 Comments »

From panic to pause….

For the last few months I have spent a lot of days with Ants in his room at the nursing home, just watching dvd series like Downton Abbey; The Bridge etc. Ants loves anything that has an historical slant so this has been a great way of spending time together.

However, some of these movie afternoons are interrupted by staff performing ablutionary tasks, or simply moving Ants from a wheelchair into the easy chair. These interruptions are sometimes difficult and complicated, but Ants is treated with respect and, often, affection. Phew!

If I am there, one of the things I do immediately is to mute the television because I have never forgotten how one of Anthony’s many doctors explained to me that people with PD cannot focus on two things at once. So, if carers are trying to get him to stand up, but the TV is blaring news about the latest ghastly situation, he freezes mid-stride, because all of these sensory experiences are crashing into each other and he cannot focus on walking.

Whenever I get a late-night phone call from the nursing home (not very often thank goodness!) the carer will help Ants to talk to me on his own phone (which he very rarely answers now because he has forgotten how), this is how the conversation goes:

Me: Are you okay, Ants?
Ants: When are you coming to get me?
Me: I’ll be there soon, Ants. I love you and you have to stop panicking. It’s all okay and you are in a nursing home with lots of people looking after you!
Ants: But I just want you. When will you be here, Jules?
Me: I’m on my way, Ants- I love you so much!

A couple of years ago I used to race into town to make sure Ants was okay but, after several times of finding him asleep, I stopped panicking, started pausing, and the whole pause thing has somehow killed all of the panic.

So now, when I feel the panic creeping into my scalp, ankles and elbows, I stop everything that is bothering/torturing me and I just PAUSE!

So, despite the new-agey sound of this, there is a pragmatic outcome I think when you put PANIC on hold in order to Pause, you can get a better perspective. I think!

46 Comments »

I can’t do this until I do that!

IMG_4241

You know that feeling that you can’t do something you need to do until you do something else first? For example, here are some conversations with myself over the two-and-a-bit years since Anthony went into the nursing home:

I can’t have people visit until I clean the house from top to bottom;
– I can’t go on a diet until I have eaten all the cheese;
– I can’t sort my old paperwork until I have sorted my new paperwork (well I think I have a point there!)
– I can’t turn over a new leaf until Monday because Monday is a good day to turn over a leaf, or perhaps Sunday if the date is not an odd number (a little bit of OCD?);
– I can’t do the washing (laundry) until I find it;
– I can’t get back in touch with that old friend until I find all of her emails to me that I didn’t answer, and answer them.
– I can’t get a decluttering service to help me until I do some preliminary decluttering by myself (yes, this has worked to some extent);
– I can’t make healthy smoothies until I have the ingredients to make healthy smoothies with;
– I can’t write anything new until I sort out all my old writings (in case I find something potentially brilliant that has publication potential);
– I can’t blog until I’ve read everybody else’s blogs;
– I can’t have fun until I have solved all of the problems in my life and the world;
– I can’t think new thoughts until I have figured out all of the old thoughts;
– I can’t breathe easily until the person I love can breathe easily too (literally and figuratively);
– I can’t cook a beautiful meal until I feel hungry enough to do so;
– I can’t quit my old bad habits until I develop a comprehensive list of goals for new habits and that will take me a year or so;
– I can’t go back to work in any capacity until I am happy;
– I can’t get up early in the morning until I want to get up early in the morning;
– I can’t re-friend that person until I figure out why we became estranged;
– I can’t pick the figs until I figure out how not to be bitten by hundreds of ants;
– I can’t read this novel until I’ve read that novel….

These excuse-ridden conversations with myself go on and on and on and, even though the above conversations are somewhat tongue-in-cheek, all of the ‘can’ts’ and ‘untils’ have culminated in a great, big “I give up!” feeling of absolute hopelessness.

I kind of figured this out this morning as Dina (from Chaos-to-Clear) helped to declutter the back veranda which was crowded with boxes and crates of Ming’s baby toys, legal documents, empty diaries, sentimental quotes, letters, postcards, a lot of photos, and a multitude of bits and pieces. She and I could both see how I had obviously tried from time to time to organise all of the ‘stuff’ but I had to swallow my embarrassment at all of this spider-webbed clutter!

This is a photo of before Dina arrived:

IMG_4235

It took around four hours to clear/sort/discard/box up/categorise most of the veranda stuff and at 2pm we stopped and I looked at what we had done. The feeling of freedom and elation was indescribably good. And then that feeling was trumped by the feeling of hope!

And it is only now that I see, in retrospect, that I must have been in a state of absolute despair, to let the house and its contents get the better of me in terms of clutter! Of course this was not just because of Anthony going into the nursing home (that was terrible enough) but all of the ghastly other stuff that happened in those two blurry years – Ming’s surgery, my mother’s broken bones after falling twice, the car accident which I can hardly bear to think/talk/write about despite the fact that everyone survived.

I have written about all of these things in past blog posts but I am reluctant to re-visit those posts because….

– I can’t re-visit all of this painful stuff until I learn how to stand up straight and tall and and smile at the monster!

IMG_4246

Note to Ming: I promise not to go to the dump with the rubbish until you get back from your holiday. We shook hands about this so please trust me! (This deal he and I made is another story!)

54 Comments »

The thank you thing

It struck me this afternoon, during my shift in the dementia house, that people with dementia don’t get thanked very often. After all, they are the recipients of care so are always saying thank you to us (family/friends/staff).

B, who is always wanting to be busy (because she was one of 12 children and their mother was a perfectionist in every way) is constantly anxious and quite bossy to the other residents sometimes. Her agitation is heartbreaking and, as she is extremely mobile and physically fit, she sometimes challenges the patience of staff.

After dinner tonight I threw the old towels I’d brought in the other day onto a table (an idea suggested by another staff member) and B proceeded to fold them all, meticulously. I helped her with a particularly big towel and, once we had finished, I thanked her rather profusely.

Me: Thank you so much, B. I couldn’t have done this without you.
B: Oh darling, anything I can do to help. I was one of 12 and my mother was a hard worker. Everything was starched and cleaned and perfect, washed, ironed, starched. And we had to get the littlies to bed, changing nappies, cooking tea.
Me: I think you must take after your mother, B.
B: Oh no, I could never do what she did. Do you want me to help you with the dinner, love?
Me: I think I can manage tonight, B, you just sit down and I’ll serve the soup.
B: What about this old lady here?
Me: Just keep her company, B!

I probably haven’t written this very coherently but my point is that when I thanked B for helping me with the folding, she looked at me with her beautiful, bewildered expression, then grasped my hand and said, “So what do we do next?”

Me: I thank you, B!

45 Comments »