jmgoyder

wings and things

The rule of “good morning!”

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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

“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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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:

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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:

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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!

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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!

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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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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.

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Even the house is sprouting!

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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.

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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.

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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.

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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!

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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.

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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!

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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!

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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.

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Miscellaneous….

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Feathers and figs

Well the whole lawn is strewn here and there with the feathers shed by our peacocks. Periodically I go around picking them up and last week Dina (my decluttering expert) tied them into bunches to be sold and she bought 20 herself, so I made $20!

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Don’t worry. I don’t keep a display like this on top of the stove ordinarily; I just put them there for the picture.

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As you can see, peacock feathers are varied. The above picture shows the underneath feathers.

The lawn underneath the two ancient fig trees is also strewn – with dead figs. Tip: never step on a dead fig and, if you do, clean the sole of your shoe immediately. Dead figs are like superglue!

I have been picking and giving away as many figs as I can because the heat is killing them off fast. This morning was a bit cooler so I picked heaps and they are now in a sink full of water to drown the ants. I’m taking them into the guys at the restaurant Ming works at. They go very well with blue cheese.

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Picking figs always reminds me of Gar, Anthony’s mother. She would always want me to try to pick the topmost fig by hook or by crook and, yes, we usually used her walking stick to do so.

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So, with the figs and feathers, I am feeling quite rich!

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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!

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Mystery solved!

The other evening I finished work in the dementia house at 7pm (new schedule) and headed up to Anthony’s room in the high care section to say goodnight. As I am not usually there so late, I was surprised to see that the hoist was in his room and that he didn’t have a shirt on. His dirty shirt was off and his clean shirt was on the side of his armchair so I put the clean shirt on him and chucked the dirty one in the laundry basket in his bathroom. Then I put his favourite blanket on his knees and we had a chat.

Me: How come you didn’t have a shirt on?
Ants: I was in a fight.
Me: Who with?
Ants: Those kids again! They tie me up.
Me: See this thing, Ants? It’s a hoist and the nursing staff need it to lift you up and to get you into bed.

He wasn’t too anxious but I could see that he had been. So I kissed and hugged him and said my usual goodbye of “Just going up to the shop to get something for dinner”, and turned the television onto the news which he loves.

Then I left. Usually I say goodbye to staff who are around but they must have been busy somewhere else so I let myself out and drove home.

The following day, Anthony said, “I have to tell you something” but he couldn’t articulate anything that I could understand to begin with, then ….

Me: Were you in another fight?
Ants: Yes!
Me: What happened?
Ants: Those boys tied me up again.
Me: I’ll go and speak to someone about this, okay? Back in a sec.

I went to the nurse’s station and asked M if there had been an incident last night and she said Anthony had become aggressive towards staff trying to get him ready for bed so they had had to leave him alone for a bit. Then she looked at me, her expression full of compassion.

M: It’s okay, darl, he settled down.
Me: He seems to think he is in some sort of boxing ring every night. He is terrified of the hoist; do you think that’s it?
M: Okay I’ll tell the staff. One thing we couldn’t figure out was how he got into his clean shirt.
Me: Oh I did that on my way out.
M: Well that’s a mystery solved!

The following day, during my time with Ants and then my 3 -7pm shift, a couple of staff approached me about the previous evening’s mystery, i.e. Anthony had become feisty when various different carers tried to get him ready for bed so they had left him alone for awhile. Not long after that, they came back into his room to find him dressed for bed and with the blanket on his knees, and calm. Nobody could understand how this could have happened because nobody had seen me come and go, so it had mystified one and all until I clarified that it was me who put his shirt on!

Since then, numerous staff have told me the mystery story. You see there is no way anymore that Anthony can put his shirt on – no way at all. His Parkinson’s has pretty much shut down that kind of ability.

I guess the best thing about this experience is that I now know for sure that the carers in this nursing home really do care about him, and, now that I am a staff member too, I get told stories of how he is when I am not there.

As one of the carers said to me yesterday, “I knew straight away that it must have been you who put his shirt on.” Then she said, “You know, he is absolutely besotted with you. I tried to flirt with him a bit and he sort of brushed me aside and said that you were the love of his life.”

I think it is delightful that so many staff are still laughing at the mystery of the shirt and, today, I will tell Anthony the story too and he will SMILE. And I will laugh all over again!

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Overcoming the terror of getting a massage.

Tomorrow I am seeing a person who I have known about for some time. She is a qualified personal trainer and masseur and she is the daughter of my friends who own our local butcher’s shop. I don’t quite know why I am so terrified but it is probably due to the fact that I don’t particularly like taking my clothes off and I am really hoping not to have to do that ….

https://www.facebook.com/Absolutebodyworksaustralia?pnref=story

Today I finally got the courage to go to Karissa’s place for a massage and it was fantastic to meet this wonderful young woman, and to have everything explained so clearly before and during the massage. Karissa has this way of making even a somewhat tactile-defensive person like me be okay with taking most of my clothes off, drape myself with towels and lie face down on the massage bench. Karissa left the room while I prepared myself and then she knocked on the door before re-entering the room. I was nervous and feeling naked but then all of that nervous nakedness succumbed to her respectful covering of my lower body with towels and then the massage itself. I wasn’t quite sure what to expect from the massage (having only had a couple of these in my life) so I was a bit shocked when Karissa found these painfully ticklish points in my back, neck and shoulders. After the session, I had to go to work at the nursing home and I felt quite giddy with both the effects of the massage AND the discovery of this amazing practitioner.

Thank you, Karissa, for eradicating the terror!

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Anthony’s 79th birthday

Today is Anthony’s 79th birthday and yesterday I promised him I would take him for a drive down south to Golden Valley, his childhood home in Balingup. He asks to go to Golden Valley much more than he asks to come home here and, as it’s been months since I have taken him for a drive anywhere, except around town, I decided to do it.

I was nervous about our little expedition because it is very hot here at the moment and Ants is really hard to manoeuvre when immobile (which is most of the time now). But at 11am he was able to walk, with his walker, the short distance up the hallway and to the outside front driveway where I bottom-shoved him into the car. This bottom-shoving method is very effective; I just get his right leg into the car while he is standing up clinging to the open car door, then I sort of swing my right hip against his left hip to plonk him into the seat. This is not a method I recommend to care staff, who are not allowed to assist once outside the building anyway, but I don’t have to adhere to the care staff rules when it comes to Anthony because I am not his carer, I am his wife. And he seems to get a bit of a kick out of my rough handling – ha!

An hour and a half later we arrived at his childhood home.

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We parked there for awhile and admired the scenery and I asked him questions that he had already answered years ago, like about the hedge that he planted and trimmed obsessively for years. “Looks like someone is doing the same thing,” I remarked but, by this time, Ants was finding it hard to articulate anything and his words were skewed.

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Then we drove the short distance to the tree park and he suddenly got a bit excited and mentioned the name of a woman he told me about years ago. She and her brother owned the farm adjacent to Anthony’s parents’ and, as a boy, he used to walk up to visit her. I am going to call her Eleanor for the sake of privacy despite the fact that she probably died years ago. So little-boy Anthony used to walk up the hill to visit in-her-30s Eleanor and she would feed him with home-made cake and sometimes play the piano.

At the tree park, I stopped the car and we admired the view and I said, “She was obviously a wonderful person, Ants” – then, right out of left field, he said “There was no sex.”

Right, okay ….

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After that, I asked Ants if he wanted to go to the old pub which has been refurbished and he nodded yes but I could see he was getting very tired. This pub is a place we’ve been to from time to time over the years, but this time I knew I would be unable to get Ants out of the car, let alone into the pub, so I parked the car in a shady spot and ran inside to check it out.

I ordered two light beers and asked if it would be okay for us to drink these in the car because my husband was too disabled to come in. Yes that was fine. Then I asked to see the menu and they had oysters – joy, bliss! So I hurried back to the car with the beers and told Ants about the oysters and went back to order half a dozen.

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I had to feed these to him because his hands don’t work very well anymore but he vacuumed them down as you can see! So then I raced back into the pub and ordered another half dozen and the chef delivered them right to the car – amazing!
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By this time I could see that Anthony was utterly exhausted and there was still 100 kms to travel back to the nursing home. So I drove with the radio on (Ants loves music) and, periodically, put my non-driving hand into his or around his shoulders. We got back nearly four hours after we’d left and the very thing I’d dreaded happened. Ants couldn’t get out of the car or stand up or speak, so I went inside and got a wheelchair but that was still very difficult. Nevertheless I eventually got him back to his room and asked the care staff if they could attend to him soon. Then I kissed him again and asked if his birthday had been okay.

“Not too bad,” he said.
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This photo shows what happens when I ask Ants to smile for the camera – mmmm.

Happy birthday to my beautiful, incorrigible, resilient, fantastic, sarcastic, wonderful husband!

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