jmgoyder

wings and things

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

45 Comments »

Gutsy

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:

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She is often outside one of the four doors to the house, wanting to come in.

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Or posing outside; yes, she is quite the poser and always has been.

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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.

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In the following photo she is resting on Anthony’s arm in the nursing home (2012).

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And in this one, she is looking up at him during one of his last visits home (early 2014).

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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.

27 Comments »

Dusk

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):
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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:
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Blue wren:
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Flame trees from dog yard with one of our many Christmas trees somehow flourishing in the heat:
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Blaze again:
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Feeding time – that’s Gutsy9 in foreground:
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The last figs:
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And, just a moment ago, Ming’s best friends about to take him out on the town:
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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!

34 Comments »

Miscellaneous

One of the things I have had to do in all of the recent decluttering is to toss some things into a miscellaneous box to be figured out at a later date. Despite the fact that this box is getting rather full it is good to know that I have one place to put anything that I don’t recognise. I will hold the object out to Dina and say, “Do you know what this is?” (Usually it’s some sort of ancient tool – an artefact from Anthony’s past). If neither of us can figure it out, it goes into the miscellaneous box – perfect. Then it’s over to ‘the Ming’.

I thought it might be quite fitting to write a bit of a miscellaneous post, having discovered that ‘miscellaneous’ is a definite, and quite acceptable, category. So here goes:

Most of the grapes are ripe now and I can just pick them and eat them whenever I go outside. I think it’s just the one vine and the wild birds get to them as fast as I can so there is almost no point picking them. They grow just outside the back door and I’m not sure if Anthony planted them or if they were there before the family came here.

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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….

43 Comments »

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!

61 Comments »

I can’t do this until I do that!

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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:

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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!

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

54 Comments »

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!

44 Comments »

Small mercies

I have just found out that my lifestyle assistant/occupation therapy role in the dementia house of the nursing home where I work part-time will now allow me to feed those residents who can’t feed themselves. I will also be allowed to serve food and drinks (previously a no-no due to the risks of choking/dysphagia) but now that I have seen the training dvd twice, and filled out the dysphagia quiz/questionairre, I am allowed to help, rather than hover, during mealtimes.

Not only that, the three of us who alternate in this role have had our 3-6pm shifts extended by an hour – to 7pm – which is a wonderful idea because it will allow for a more relaxing atmosphere before and after meals.

I am still finding my feet in this job and today I felt a bit at a loss when the wheelchair walking was limited to inside (due to the heat – 36ish) and, after taking F, Y and B through the inside of the complex, from house to house, I came back to find that M’s daughter had begun a very successful table ball game (rolling a plastic ball to and fro).

M’s daughter is really competent with this game thing, whereas I am still a newbie and not very good at playing games, so I am learning a lot from her. She visits her mother every single day at the same time and when I see her I feel relieved to have her bingo expertise!

It is hard sometimes to find ways to provide entertainment because I am pretty hopeless at card games and jigsaws and arts and craft; I much prefer a conversation and today B and I had a hilarious one.

E, the OT boss, says that to be unhurried is good and to go with the flow is even better but it is harder than I thought it would be to just relax into this role. The unpredictability of how each of the ten women feel each day from 3pm is, of course, the governing cue and if someone is anxious she is the first person I comfort either with a hug or a walk or a conversation. Today, S. was, as usual, crying so I said, “C’mon, S, it’s not that bad!” And she looked up at me, bared her teeth and said, “Okay, Mum!” We all laughed – residents and staff.

B said “Told you so” in her droll way, Y said “Leave me aloooooone!” and J, who hardly ever shows any feelings, smiled at me just before I was finally allowed to give her dessert.

Small, wonderful mercies!

39 Comments »

The end of an era

Well today I said goodbye to the last of our geese, and the duck, Zaruma (pictured above). The first photos (below) are from 2011 when all except Godfrey were little. The latter photos show them all grown up. The reason? Too many casualties via foxes and the dogs who lately have been able to get out of their yard by hook or by crook and they attacked my beloved Zaruma the other day (that was my turning point).

So I was having to pen the birds 24/7 plus the dogs versus birds argument was becoming a regular source of conflict between Ming and me. So Ming advertised them on the internet and an animal loving couple came to pick them up at 1pm yesterday.

I was dreading it and didn’t even want to be here at the time but Ming was at work so I had to be. I didn’t want to see Woody, Seli, Ola, Diamond, Zaruma, and even grumpy old Godfrey, traumatised.

Well I needn’t have worried. Belinda and Tom arrived with a trailer and a few big cages, water containers, and when she saw my eyes fill, she gave me a big bear hug and told me to go inside while they caught “the gang”. So I did and wrote all their names on a piece of paper then made myself go back outside immediately to oversee things.

AMAZINGLY, Tom had simply gone up to Godfrey and picked him up, carried him to their station wagon and put him in a cage in the back without the slightest fuss from Godfrey! For those who don’t know, Godfrey is the gang boss and has been so protective of the others since they were little that he turned aggressive, and he BITES! But he didn’t even attempt to bite Tom.

Even though the rest are so tame I could easily have picked them up and put them in the other cage, I just couldn’t do it because I was so sad. So Belinda and Tom did it and talked softly to them to calm the more panicky ones (Woody – oh my poor heart!) and it only took around 10 minutes – smooth and gentle and I felt incredibly relieved!

Belinda and Tom live two hours away but they are better equipped, with huge yards for all of their poultry, big swimming ‘pools’ etc. so it’s wonderful to know they are going to a great place and will be there by now. We have exchanged email addresses so she can send me some reassuring photos, so I feel great about it all now.

But after they left, I cried like a baby. I will miss them and the amazing peace they brought me in the months before Anthony went into the nursing home.

      

Thank you, Belinda and Tom.
Goodbye, Gang.

78 Comments »

Silence

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.

64 Comments »

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