jmgoyder

wings and things

Changing

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

I have changed my mind so many times over the last few years, months, weeks, days, minutes, moments, about how to best care for a husband, 79, in a nursing home, and our son, 21, embarking on adulthood. It’s doubtful whether Ming will want chooks in his future life!

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Not very long ago, whenever people talked about the weather, or gardening – whether it be small-talk or serious-talk – I would tune out. I have never been the least bit interested in anything relating to the actual job/hobby of gardening despite numerous attempts to get interested.

Okay, I got interested many times; but I didn’t remain interested, mostly because I was busy working at the university and bringing up the beautiful brat, Ming (who, by the way, isn’t interested in gardening either.)

Gardening was Anthony’s ‘thing’. His family (mother and younger brother) came here in the late 1950s to run a dairy farm and Anthony began planting things – camellias, palms, silver birches, flame trees, roses, citrus, hedges … and a whole lot of other stuff.

Up until the year before the nursing home, Anthony was still interested in planting, watering, and wandering about, in the garden. But he would get stuck! We only had the walking stick then so he would go out the back to check on a hose and then become paralysed and sometimes it took a whole hour to get him back to the house. Then, one day, when he was in his armchair in front of the fireplace, I told him not to move while I went up to the shop to get some supplies, only to find him face-down in the front yard; he’d fallen again!

Parkinson’s disease (and all of its off-shoots, including dementia) is an ever-changing condition that can make life tricky for those who care for family and friends inflicted. For example, sometimes I can show Anthony photos of home – the new chooks, the better-kept garden, the mowed lawns etc. and he will think he has been home.

But, at other times, Anthony will ask to come home and I will have to distract him. This is not because I don’t want him to come home; it’s because he is mostly immobile now so I actually can’t physically manage him. The guilt is ghastly of course but it is easily blitzed by my almost-daily company, in the nursing home, during the afternoons. And photos of the new chooks!

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This morning this wonderful group of gardening people came over (it’s a group I’ve recently sort of joined) and each person had a good piece of advice for me. Plus everyone brings some produce to exchange – fascinating!

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I am changing into a gardening person!

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

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Home is where the humour is!

After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.

1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and

2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.

The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.

Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.

So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.

For example:

Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?

Anthony: Yes (looking at me in a sneaky way).

Me: So, when exactly do you do these sit-ups?

Anthony: When they need doing.

He makes me laugh more than he makes me cry, this fantastically funny husband of mine!

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On-line/off-line dilemmas

With the blog I write here (we can just forget about other blogs I hoped to establish ha!) I really don’t quite know, or even remember, how it all began. Okay so it was my friend, Nathalie, who first suggested a blog so I began to write one and even included photos.

Fast-forward to now and I have learned a lot about the politics, joys and disappointments of blogging. WordPress is a blog-site I would recommend to everyone and I have had the most wonderful fun, made friends, and connected with people and groups who share their photos and stories beautifully.

But I just can’t keep up with reading, commenting, replying and so on; the blogdom for me has become a bit of a problem. I so admire people who CAN keep up and feel really guilty for not replying to comments etc. My gratitude to blog friends is difficult to describe; how people who are unknown to me have become known friends – extraordinary!

Anyway, I’ve decided to go off-line for a week or two just to remind myself what it feels like to be off-line. Oh yeah, and I’m beginning to ‘get’ Tolle’s NOW thing!

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Unfinished….

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Such a strange realisation!

An ‘aha!’ moment!

The inability to get to the ‘finish line’ or the ‘punch line’ was making me utterly miserable (as well as my inability to understand/implement Tolle’s NOW concept, cope with a depressive episode, watch myself grieve for Anthony in a way that seemed premature).

But it wasn’t any of those bracketed BIG things that were bothering me; it was the fact that the few remnants of weeks and weeks of decluttering, finding history, reorganising the house/farm etc. were still here.

It was the remnants!

Old books, doilies, Anthony’s school report from when he was little, old photos of my dad when he was young, bark paintings from our years in Papua New Guinea, a thousand buttons, a pile of costume jewellery, a silk corset and bra wrapped in newspaper for 100 years, bits of china that would be valuable if not cracked, old instruction manuals from before I was born, and a whole lot of bits and pieces that must have had sentimental value for someone before Anthony was born, and maybe even before Gar, his mother, was born.

So today I began this last phase by going to the dump with Ming and unloading a very full ute-load of rubbish; then I proceeded to use a knife to cut up a very big carpet mat underneath my bed (it had to be cut up to be manageable) and Ming helped me. The dust that came out from beneath that ancient carpet was justification enough to get rid of it – wonderful!

And now I have contacted the heritage park people to come over for a final browse, I am going to advertise the gramophone and other items online (once I figure out how), and I’ve already boxed up historical material for the relative who is interested.

Every single photo/photo album in now in Anthony’s cupboard so I just have to do the scanning bit by bit by bit whilst being with him.

And my point in this ridiculously self-indulgent post?

I was stuck at the ‘unfinish line’ and now I’m not. Full steam ahead!

Very grateful for comments and am going to reply to them now. I don’t even ‘get’ why I had such a downer when my new neighbour/hairdresser, Camille, made my hair a wildish red, I met my beautiful mama for lunch on Friday and laughed my head off, met with my best friend Tony yesterday for lunch and Ming bought me Dylan Moran tickets for my Mother’s day present – so many great things.

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Oh and Dina is coming for dinner in a couple of weeks (well, she is coming to cook risotto in her thermomix) so I better get finished with these remnants asap.

My conversation with Ming a few seconds ago:

Me: I’m over my blah finally, Ming.

Ming: How’d you do that?

Me: Got a few things done I guess.

Ming: Jobs, jobs, jobs!

Me: Well we had a lovely time at the dump today didn’t we? [At the dump Ming had yelled out, ‘Mum, this is glorious! We’re not fighting! What a beautiful dump run!’]

Ming: It’s probably due to Sontime.

Mmmm – that is definitely an unfinished conversation!

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So much for the autumn hiatus!

Well my autumn hiatus didn’t last long did it! Neither did my ambitiousness haha! I had another look at the full-time behaviour consultant job description and realised that although it seemed a perfect fit for me, there is no way I could do it and keep my job at the nursing home. More importantly, there is no way I could do it and spend enough time with Ants. I did email the association asking if it might be possible to job-share the position but I haven’t heard back yet. There was a public speaking/teaching component to the job but there were also a lot of administrative duties (of people and paperwork and policies) and the latter does not appeal to me in the least! I’m much better at being bossed than being a boss.

So that’s that for the time being – maybe down the track I will do something like that but in the meantime it’s back to writing, including blogging, for me. And I discovered a wonderful program yesterday that will convert your blog into a PDF document and it’s called blog2print. In just an hour or so and for less than $100 I was able to convert 2000 pages of blogging, from 2011 to now, into seven PDF documents inclusive of photos. For more money the program will also convert your blog into a hard cover book, or books, but I didn’t want that because I want to be able to edit and revise and rewrite all those blog entries into a book about our personal experience with Parkinson’s disease and dementia. I had already begun the tedious job of copy/pasting bits into a word document but it was taking forever partly because of having to read the blog backwards and getting confused with dates etc. It wasn’t until I googled “how to turn a blog into a book” that I discovered blog2print and other programs that will do what would take hours and hours manually in just a few clicks – extraordinary!

Anyway this discovery also reminded me of how much blogging has become a part of my life. Not only is the camaraderie between bloggers a fantastic source of joy, but if I hadn’t written all of those posts I never would have remembered the chain of events of the past few years. I guess what I’ll do now is to print it out in 50-page sections and do the hand-written editing in the nursing home with Ants, then come home and finish the job on the computer. That way I can add material retrospectively.

Also, in anticipation of a blog break, I suddenly felt quite bereft! It is such a great way of keeping a record of things that can easily be forgotten – especially conversations both with Anthony, the women in the dementia house, and with the Ming.

For example, he rather reluctantly came to find me at work the other day and I let him into the dementia house and introduced him to the ten women who he proceeded to charm easily, simply because he is a male, and young! Oh I am so relieved not to be going for that behaviour consultant job. I work this afternoon and I can’t wait! I have never felt like this about any other job and I am very much ‘at home’ in my OT role now. Even though none of the women remember me, I am greeted with welcome smiles and the oft-repeated “Oh you look so familiar. Have we met before?”

Anthony doesn’t remember who any of the staff are either and the other day introduced me to one of the carers by saying to her: “Have you met my wife?” She and I exchanged a grin and a ‘yes’; after all, we have known each other now for over three years.

Blogging helps me to remember and record these tidbit gems, these moments of pleasure and humour in amongst the pain of illness and age. And autumn is a good time to write and be because it is too rainy to go for a bike ride, Mr Tootlepedal!

It might also be a good time to convince Ming to get himself some new shoes. IMG_4473

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Autumn

My clouds hug the sky

cockatoos caw out their joy

and the rain giggles.

Just a little haiku to celebrate our autumn. Every evening when I leave the nursing home, I drive past a spot on the edge of town where hundreds of white cockatoos fill the trees like giant snowflakes, and create a raucous cacophony. They are so loud, it can be alarming if you don’t know what the noise is but I love it! I am not quite sure why there are so many in that particular spot as there are none on the farm; there are plenty of other parrots here but not the white ones. Interesting. Well it is finally raining and the brown paddocks will soon be green again! The faltering wormwood will come back to life, the five acres of lawn will need mowing around the house and everything that looked dead will be reborn (okay, except for most of the roses!) IMG_4307 IMG_4505 The wormwood hedge stretches from where the house is right back to where Ming’s shed is. I remember the days when Anthony trimmed it, then the days when Arthur trimmed it, then the days when Ming said he would trim it, and the days when I thought about trimming it, but, alas, all of those days are gone. Autumn seems a good time to take another blog break so that I can concentrate on some other projects including applying for a job as a behaviour consultant with a local Alzheimer’s Disease organisation. It might happen and it might not but it would be a wonderful opportunity to share some of the lessons I have learned about dementia and communication over the years, including what is happening right now with Anthony and me. It is very hard to see someone who used to be the life of the party reclined crookedly in an armchair in a nursing home. It is also very hard for me to find the words to adequately express how much I love this man, my husband, Anthony, without resorting to cliches. Hence the concluding haiku:

My sky hugs your clouds.

The birds are oblivious.

You hold my small hand.

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Dementia dialogues 3

Okay so this post concludes the little mini-series about what I have learned over the last several weeks of working in the dementia house.

Silence is golden!

To begin with, I would take various of the ten women for wheelchair walks around the gardens and through the facility, bombarding them with my chatter and questions, pointing to flowers or pictures on the walls, or just telling anecdotes or jokes that I hoped would elicit conversations.

In hindsight, that was idiotic in many ways. Can you imagine being in a wheelchair, travelling through beautiful gardens, observing the various flowers, breathing in the fresh air, catching a glimpse of the ocean, with the person pushing your wheelchair, whose big shadow you can see on the footpath, chattering AT you, asking you questions that frighten you because you don’t know the answers, disturbing the peace of being outside?

Weeks ago, during one of these walks, I asked D how many children she had and she paused, nervously, then said, “Two or three I think.” She was embarrassed not to know the answer. Then, with S, the same question elicited sobs of “Where is my family?”

So now, unless the person in the wheelchair initiates a conversation, I just shut up and push the wheelchair and, in this way, we are both able to listen to, and appreciate, the silence of the fresh air, the smell of the ocean, the sight of the roses and other flowers.

Silence is golden!

Once back in the dementia house, there is plenty of opportunity to chat, joke, play card games, do jigsaws etc. so I am not quite sure why I felt it so necessary to crowd the quiet fresh air with my clumsy hundreds of unnecessary words. The wheelchair walks will now be done in silence.

The other thing I have learned through working in the dementia house is that touch can be a way of communicating that doesn’t rely on words or even facial expressions. A hug, kiss, hand hold, given to you by a person with dementia, is worth a zillion words – and to respond to that gesture is worth a zillion more. On the other hand, I have also learned that some people flinch at being touched, especially people who are silent, so this is something to be respected; after all, every single person with dementia is an individual. Some people don’t like to be hugged.

I am not going to write about this for awhile because I still feel that I am on P-plates, learning via my mistakes, learning how to appreciate and respect and ‘read’ silence, and learning about individual personalities.

Even though Anthony also has dementia caused by his Parkinson’s disease, I always test my ideas out with him just the way I used to do when I was writing university essays and, later, lectures. With the simple difference between a nod or a shake of his head, he continues to be my mentor despite the fact that his own ability to speak coherently is faltering fast. So learning how to read silence is a necessity.

Silence is golden!

Respect for silence is gold.

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Writing

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.

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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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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 ….

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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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Catching up

After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!

As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!

I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.

My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!

Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.

The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..

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…. and finding out that the width of hope is immeasurable!

Catchya later….

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