marriage | jmgoyder

Writing

by jmgoyder

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

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

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

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

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

Writing.

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

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

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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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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 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 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 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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Jan 13

Silence
by jmgoyder

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

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Jan 3

The elusive parrot
by jmgoyder

I bet you can’t even see him! Every morning I wake up and through my bedroom window I see these guys all over the giant pear tree but as soon as I venture outside with my camera they hide!

I’ve never seen this variety of parrot here before but then again my observation skills are not well honed and it may be that I have mistaken this breed of parrot for the very common ‘Twenty-eight’ parrot. Here is a link to information about the 28 http://www.birdlife.org.au/bird-profile/australian-ringneck

Unlike the 28, this elusive parrot is multi-coloured – greeny blue at first glance but with an underside of red, yellow and sometimes a red cap – absolutely beautiful! I’m going to keep on trying to get a decent photo but it is difficult to see them in amongst the pears.

It feels like a bit of an adventure to me – figuring out what kind of parrot this is, and training myself in the art of observation (and getting up early again, early-bird-catches-worm and all that!)

Once upon a time I would have been shocked at the idea of bird-watching, picking flowers, noticing the sunset, growing tomatoes (okay well I grew two before they died), cooking a curry from scratch, listening to music without doing something else at the same time. I would have thought what a waste of time! But now all the wing flits, the snow of wattle blossoms on the lawn, the aroma of a simmering curry, and the constant squawking of the crows, peacocks and this elusive parrot – all of of this life stuff, simple, small, daily details – makes me appreciate every single moment I have left with Anthony.

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Dec 30

The Anthony book
by jmgoyder

A few months ago a professor friend of mine – an historian, prolific writer and a colleague from my recent university days – suggested that I might write a book about Parkinson’s Disease framed around the blog and my experiences with Anthony. The professor said that he would be happy to read whatever I wrote and that he would give me feedback.

At the time of his visit, I was buoyant with the discovery that I now looked forward to, and enjoyed, my visits to the nursing home, and was able to spend many hours of the day there.

Since then I have begun to copy/paste various bits and pieces from posts I have written since November 2011 into a document that journals the various transitions Anthony, Ming and I have made since Anthony’s permanent admission to the nursing home in early 2012, nearly three years ago.

One of the most significant things I have discovered since perusing my blog is that I would never have remembered the sequence of events, the emotional turmoils, or the ways we coped, if not for the blog.

So now, on the brink of a brand new year, I’ve decided to write the book and report progress via the blog (as an incentive!) on a daily basis. Or something like that!

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