Parkinson’s disease | 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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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 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 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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Feb 9

I can’t do this until I do that!
by jmgoyder

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:

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!

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!)

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Feb 7

Mystery solved!
by jmgoyder

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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Feb 4

Anthony’s 79th birthday
by jmgoyder

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.

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.

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 ….

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.

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!

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.

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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Feb 3

“Chaos to Clear”
by jmgoyder

“Chaos to Clear” is the name of a local organisation I discovered last week. The lovely woman, Dina, who is the boss/instigator of this innovative organisation, came out to the farm last week for a preliminary glimpse of the chaos and, much to my relief, told me that she had ‘seen worse’ which I found very reassuring!

In order to give Dina a bit of context, I described to her what I think must have happened over the last three years since Anthony moved to the nursing home in December, 2011, just after Ming finished high school. The first part of 2012 was consumed with Ming’s spinal surgery, blurry memories of adjusting to Ants being in a nursing home, enormously difficult efforts to bring Ants home as much as possible, and the decision to resign from my job as a university lecturer of nearly 20 years.

So, in retrospect, that first year was a blur of sorrow during which I probably just functioned in a low-ebb kind of way. During the second year, I began to lose control of the heartbroken house because I just didn’t love it anymore. I stopped winding Anthony’s beautiful chiming clocks; I stopped watering his ancient rose trees; I stopped ordering kerosene for the Aga, stopped getting wood for the fireplace, stopped many of the rituals we had in place (like polishing the silver and brass) because Ants wasn’t here anymore so nothing seemed to matter much. I think that those two years when I lost the plot in terms of organisation of the house was further problematised by my reluctance to get rid of Anthony’s hoard!

And now we are into the fourth year of Anthony’s life in the nursing home, my life out here on a farm he adored, and Ming (just turned 21 and managing the upkeep of the farm to some extent and employed full-time at a popular restaurant in our closest city/town), has become a life I don’t want any more.

I only told Dina little bits of this sob story as she and I decluttered the pantry (and that was a fantastic experience of culling!) But, in telling her these bits and pieces, it made me realise how the fact that Anthony no longer lives here in his own house, with his own things, has prevented me from de-cluttering his hoarded goods.

This morning, I got up really early to clear the floor of the pantry, vacuum and mop it before Dina even arrived! I got the impression from her that she had wanted to de-clutter the floor – haha too late – and I told her she had inspired me! We then worked together – Dina, Ming and me – to classify everything as either (1) rubbish; (2) to be given away; and (3) to be valued by an antique person.

In just three hours, a pantry was transformed from a kind of chaotic junk room into a place of organisational bliss! There were a few glitches, of course, because Ming wanted to check every single bag/box of rubbish I had thrown onto the ute to take to the dump tomorrow. To his credit, he did find two unopened toothbrushes and a brass toast rack, but he also dumped things like banana holders, a multitude of rags, crappy old boxes of crappy old crap, and and some cracked china.

We also found a magnum of unopened Bollinger from before I was born!

Thanks so much, Dina, for helping us sort things out!

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