jmgoyder

wings and things

Unfinished conversations

During my 3-7pm shift today (called ‘the sundowner shift’) I overheard the following tidbits of conversation between one resident, Anna, and various other residents.

Anna: You’ve spilled your food all over yourself!
Sheila: So? Mind your own bloody business!

Anna is a beautifully groomed, very fit and mobile woman in her eighties, but she suffers terribly the loss of her husband because she asks for him nonstop. Most of the staff will tell her that he is busy on the farm and will be in later but, as this is something that has to be repeated over and over, a couple of staff will sometimes remind her gently that her husband is no longer here – that he died. Anna’s silent acceptance of this truth is hard to witness but thankfully her grief is short-lived as she collects her handbag, powders her nose, applies lipstick, and asks again when her husband is coming to pick her up.

Anna: My husband should be coming to pick us up soon for church. Is yours coming along too? We better get ready….
Penelope: I don’t really know if I … my son maybe … he’s the one with the, with the ….
Anna: How’s my hair? Do I need any more lippy? Come on girls, up you get; it’s getting late.
Penelope: It certainly is! We can do it when the time comes over the you know that thing I was telling you….

Of the ten residents in the dementia house, Anna is the one who, on first impression, seems absolutely fine. It is only when you get to know her that her dementia, and associated agitation, becomes apparent. Tonight, after dinner, when most of the residents had been helped by the carer into their pyjamas and dressing gowns and were watching the television, I began to make supper (tonight’s was milo and bananas or biscuits, quite a popular combination). Anna thanked me a few times for her ‘delicious’ drink and gave me a beautiful smile. She seemed so much more content than usual, but, with only six shifts per fortnight, I can’t possibly know what is usual apart from hearsay.

Anyway, I was delighted to overhear this:

Anna: They’re good here, aren’t they. You never have to be perfect.
Dorothy: Yes, dear, very good. Now drink your tea.

The laughter that fills this dementia house is a wonderful, wonderful thing and, in many instances, is due to the unfinishedness of conversations, like Anthony asking me today if I could wash the car in readiness for tomorrow’s trip down south. My pause was followed by “Can we talk about this tomorrow, Ants?”

Anna: Are you cold, love? Do you want me to get you a cardigan?
Ellis: (under her breath) Do you want me to get you a bullet, bossy boots?

Note: Except for Anthony’s, names have been changed to protect the innocent and guilty – ha!

 

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Going, going … gone!

Here are some ‘before and after’ photos of the inside of the two sheds that Dina, her assistant and I cleared the other day:

Shed 1:

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Untitled 3      Untitled 4

Shed 2:

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Untitled 3   Untitled 4

I asked the lovely woman who runs a local heritage park/museum to come out this morning to see if any of the bits and pieces were of interest. She arrived with the man who helps manage the park and they inspected the ‘goods':

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After some mulling and very interesting chats about what some of the once-upon-a-time objects were, the heritage park people picked out a few items of interest for which they were willing to pay, then, with the Ming’s permission (of course!) took most of what you see in the photo away and gave us double the price we would have received from a salvage yard. Brilliant!

At the same time, Dina was here for her last big job with us which was to finish decluttering Ming’s shed/home. Unlike the other day, with the filthy-old-sheds-job, she didn’t have to wear her astronaut costume.

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At the conclusion of Dina’s work with Ming today, we chatted over coffee and were all a bit sad that this massive job had more or less come to an end. Now that she’s finished, I feel a bit lost in the ghostly space of things gone, not because I miss the things but because I am going to miss Dina’s regular visits and the euphoria of getting so much done!

One of the most interesting aspects of her service is her summaries and here is an example:

Goyder Services Summary Veranda & Kitchen PDF

I now have several of these summaries that span the two mornings per week, over two months, in which Dina has helped me to move forward. The ‘before and after’ photos in these summaries, and the summaries themselves, are a unique part of her service and a source of joy to me!

Going = rubbish tip (around ten ute/truck-loads now!);

Going = given/sold to interested people/family;

Gone = the feeling of being overwhelmed!

Thank you Dina – ps. Can you help me with the odds and ends left from our work so far?

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Treasure hunting!

Just behind the flowering tree is one of two sheds that is was full of rusty tools, abandoned bookcases, paperwork covered in fly-poop/rat-poop, the occasional photo, bits and pieces of a long time ago – well before my time here on this farm and probably remnants of before Anthony’s time here too.

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The two falling-down sheds contained objects from a long-ago era; one also contained asbestos. Then there is the little house we call ‘Arthur’s hut’ because he was Anthony’s dairy hand for decades and was the last to live there.

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Today, Dina and her assistant donned protective masks and suits in order to clear all of the bits and pieces from the two sheds, and the hut, so that I could categorise them.

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The three of us worked almost nonstop for six hours and we did it! We cleared all three buildings and I am astounded because I thought it would take days! I am sitting here now, filthy and exhausted and sneezing from all the ancient dust, feeling absolutely euphoric.

We took three enormous ute-loads of rubbish to the dump, once I had decided what was trash. ‘The Ming’ was conveniently at work and, as he rarely reads my blog, he will not need to know about those three ute-loads because we have left enough of the keepable clutter outside for him to check out.

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Now all I have to do is to sort through a few suitcases full of miscellaneous papers, books and photos (from well before I was born – Anthony first came here with his mother and younger brother when he was 23); sort the scrap metal from the collectible metal; and decide what to do with memorabilia that family members might want.

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The above photo is of the first shed we cleared. It was a very difficult job as the floor is collapsing as a result of rabbit warrens.

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History is a weird thing: it can hurt you, or heal you, or humour you. I plan to take a box-full of the more interesting relics into the nursing home to show Anthony next week.

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The garage sale has now been postponed until I do the remainder of sorting, but I am nearly ready to advertise it – hurray!

Many thanks again to Dina and to her wonderful assistant for the miracle of today!

40 Comments »

Dementia dialogues 2

My last post raises the question “but how can you listen to someone with dementia who is either incoherent or totally silent?”

There are two particularly talkative women in the dementia house where I work. One of them fluctuates between English and her first language but, regardless of what language she is speaking, her monologues are extremely difficult to understand.

The other woman, who is bedridden now, is so talkative that it is difficult to give her food or drinks because her monologue can be unceasing, but, interestingly, when she loses the thread of what she is saying, she hums a tune. Here is an example:

“And I said to him, said to him, you go go go to the shop and … humming … And there is, is, is a … humming … (takes a mouthful of food) … Oh that’s good, and he said to me that it’s, it’s, it’s a one, two, two, two … humming … What on earth are you do-doing? It’s a very nice dress … humming … chuckling … Oh no, damn … chuckling (takes a mouthful of food) … You shouldn’t, shouldn’t do that … humming … How dare you! I’ll have to, have to do, do, do that … chuckling ….” And on and on this goes.

In my ‘shut up and listen’ mode there are all sorts of nonverbal ways of validating that what these two women are saying is important. I can nod, smile, laugh, hug, hold hands, shake my head and I can pretend to understand. And the ‘shut up and listen’ mode doesn’t mean you can’t say anything at all of course; it just means that you give the person with dementia the floor so to speak. I’ve found recently that one-word responses on my part are much more effective than attempts at coherent conversations. Exclamatory words seem to be particularly successful in eliciting smiles, laughter, pleasure. “Yes!” and “What?” and “Really?” and “Amazing!” and “Thankyou!” and “Please!” – accompanied always with suitable facial expressions – can be a gift to those with dementia who are talkative.

But what about those people for whom speech has become difficult (e.g. Anthony) or even non-existent? This is very difficult because, unless you are psychic, you cannot possibly know what that person might have said/wants to say/feels like saying but can’t. How do you listen to utter silence?

To be continued when I figure that last question out!

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Dementia dialogues

When I first entered the world of blogging, “Dementia Dialogues” was my chosen title. I wrote a few posts but nobody read them and now I can’t even find the site (I thought that once something was on the internet it was there forever!)

Anyway I’m rather glad that those first few clumsy attempts at blogging are now in the trash because I feel a bit stupid now for even trying to write about these kinds of conversations. I also feel presumptuous in thinking that I had some sort of secret solution to the dilemmas faced by carers of people with dementia because there is no one-size-fits-all. Every single person with dementia is an inviolable individual with a history, attitude, idiosyncrasy, personality, humour, passion, memory, skill, dream, ability that is theirs and theirs alone.

In my new job in the dementia wing of the nursing home where Ants resides (he is in the high-care section), there are ten amazing women who are utterly different from each other but, due to their dementia, are also the same.

Getting to know each of these women as individuals has been a learning curve for me. Of course I have travelled this curve before as a young nurse working in nursing homes many years ago. And now, of course, I am dealing with Anthony’s Parkinsons’ disease dementia.

We all have conversations with each other where we forget to end our stories, leave loose ends, lose the plot of the point, pause, interrupt, argue, joke, and forget what was said. Sometimes we worry about our manners, our bad hair days, our inability to bring perspective to a situation, our dirty shirts, our sneezing fits, our unswept kitchens, and our fear of dementia.

For me, a ‘dementia dialogue’ is a conversation between a person with dementia and someone without dementia and I think it is very important for the latter to just shut up and listen.

I am so lucky to have a job where I can actually do this!

(To be continued….)

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Lost and found 1

One of the most wonderful things about the last few weeks of decluttering the house has been finding things I thought were lost.

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Dina, Ming and I have found a multitude of keys but the one pictured is rather important as it is the front door key. This is going to make getting into the house so much easier than climbing through the front window, which I actually had to do yesterday because Ming had taken the found key. As for the back door key, I am sure it is somewhere in the bowl of keys.

I have been telling Anthony a heavily edited version of this extraordinary decluttering experience by describing Dina as ‘the lovely woman helping me to spring clean the house for you.’ This works well because (a) despite being a bit of a wardrobe-hoarder, Anthony was, once-upon-a-time, an extremely organised person. He did all of the paperwork, milked the cows, looked after his mother, fondly known as ‘Gar’, and had various cleaning women in to help with polishing the silver and brass, wash the windows and, basically keep this beautiful old house in order.

Fast forward to now: As Dina and I opened the blanket chest in the spare room this week and I saw the amount of papers in there, I felt totally overwhelmed, caught between curiosity and cull mentalities. Without Dina’s help and presence, I would not have been able to cope but with her help, I was able to choose what to keep and what to throw away and, halfway through this process, I realised that these were Gar’s hoardings, not Anthony’s.

When I found a note, in Gar’s handwriting, to pay Juli (me) $60 from way back when I first came to work for her in the ’70s, I felt a bit of an emotional tug to either cry or laugh, so I laughed. Dina – always sensitive to how I might be feeling – gave me the pauses I needed to read out words written from one person to another on paper so fragmented that it sometimes fell apart in my hands.

Needless to say, much of this historical and sentimental paperwork has been put in a posterity box, including the love letter from Gar’s husband, Barr, which I thought I’d lost. More to say about these things at a later date. I still haven’t found a mass of gold (haha) but you never know!

Apart from all of this, it has been an extremely busy week in many ways so I have not kept up with other people’s blogs – sorry!

Oh yes and, now that the elusive parrots have returned, but absolutely refuse my offer of a photo shoot, I can tell you honestly that they are red-capped parrots. They are very shy of humans so I have decided to put a photo of the baby avocados instead (which the redcaps will probably eat anyway.)

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It was a joy this week to catch up with a beautiful friend who I have know since school days, but with whom I had lost touch in a meaningful/nitty-gritty way. To find that we are still the friends we were, to share stories, wine and pizza, to exchange tears and laughter, to have reconnected like this – is a gift.

Lost and found; I salute you, N.xxxxx

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Time, times, timing and a riddle….

From as far back as I can remember, I have had a problem with the seven-day week, its orderliness and its paradoxical unevenness – either Sunday to the following Saturday, or Monday to the following Sunday or any alternative combination. As a child this did my head in a bit and as for the 24 hours enclosed inside each of the seven days – well, we won’t go there. After all I failed high school maths, ha!

I would much prefer a Sunday to Sunday, Monday to Monday etc. arrangement but of course this would be impossible. Or would it?

As an adult, I still find days and times problematic if I am trying to accomplish something difficult (it used to be the writing of lectures to deliver at the university; then it was what day to do the washing; and now it is how many hours I can spend with Ants in the nursing home).

In wrestling with the aftermath of multiple situations, especially the traumatic ones, I have tried and failed several times now to get back to a normal week, a schedule, a routine, a way of fast-tracking a bad Monday into a hopeful Sunday – that kind of thing….

And earlier this week I thought I had successfully reinvented what my week would be. I had listed goals, routines, early morning meditations, bike rides, photo-scanning, photo-taking, writing ‘the book’, polishing the silver etc. and NONE of this happened!

Instead, I spent the week hugging Ants from time to time as we watched Luther, and, at home, hugging Ming from time to time as we watched Game of Thrones.

I now think it is impossible to reinvent the week. That whole seven day thing still does my head in. My preference now is for moments: Anthony’s unexpected grin; my Mama’s amazing pork with caramelised onions for dinner with my first nephew and his girlfriend last night; reconciliations with friends and relations; cheaper than usual watermelon; photos of my first great-niece, reading Elizabeth Jolley’s biography; picking the last fig today….

And the once-a-year blooms of the magical moonflower.
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1977
Anthony: Jules, come out and have a look at this!
Me: What? (amazed that he has taken my hand in his)
Anthony: The moonflower – only happens once a year, kid (removes my hand from his and looks embarrassed).

2015
Me: Ants I brought you two moonflowers, but they’re closing up already! I’ll get a vase.
Ants: You are beautiful, Jules.
Me: Really?
Ants: Just brush your hair.

Is it possible to reinvent what a week was? No.
Is it possible to fall in love again with someone whose disabilities made things difficult? Yes.
Is it possible to reinvent a week in a day-by-day way? Yes! It’s a bit complicated when you use a calendar or diary but an eight-day week, ten-day week (or anything you like) is entirely possible (I think!)

If the moonflower here only has one day of the year to bloom (as has happened here) then what the hell is it doing for the rest of the 364 days?

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Values

On Tuesday, Dina and I arranged all of the stuff I wanted valued onto two tables ready for the antique guy, Mike, to value and/or purchase. When he arrived, introductions were made and he got his little eye-magnifier-thingy out and began what ended up being over four hours of a fascinating adventure into the history and mystery of everything from chinaware to silverware to walking sticks to coins etc.

Every time Mike said “Oh, you know what this is?” or “Now that is beautiful!” I felt quite chuffed. As Anthony was/is an antique enthusiast and, to some extent, a collector, it was interesting to find out what the things he had bought, or we had bought together (prints/lithographs; a piano stool, the grandfather clock, coins/banknotes, a silver egg coddler, willow pattern china, a Gallopili photo, etc.) were actually worth.

As the three of us went through the wares, I wrote down what things might be worth and what Mike would pay me for items he was interested in. Anything chipped or cracked was either discarded or put into the garage-sale box; most of the silver-plated and brass goods were deemed low in value as nobody wants to polish anymore. Mike wasn’t interested in any of that so Dina and I put these items onto a separate table for me to sort out later.

Interestingly, it was the little tangled-up trinkets plus my grandmother’s collection of Royal Doulton teacup sets, that had more value than the bigger, more impressive-looking objects! I sold a few of these to Mike but kept this one (see the peacock?)

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Family heirloomy stuff for Ming went straight into my now decluttered office at the back of the house; give-to-relatives stuff went into a couple of boxes; stuff to keep (because I love it) will go back into the living room; garage-sale things ended up in several boxes!

Call me mercenary but I had not wanted to give away or sell anything that might be worth a fortune so, thanks to Mike, I am now in the position of being able to give/sell things more cannily – ha! And it is almost a relief to know that none of this clutter is particularly valuable monetarily.

This means that I can now retrieve the objects that have/had sentimental value for Anthony’s mother, Ants, Ming, my own mother and father, and me … and put them back on display. I particularly like the silver and brass because I can remember polishing it with Anthony’s mother, Gar, and then with Anthony. I haven’t polished any of it for some time so will not take a photo until I have, but it is beautiful!

Towards the early afternoon, as Dina and I sorted things according to Mike’s valuations, I remembered to show him the coin I’d bought for Anthony in the Christmas of 2000. It is a one-kilo silver coin produced by the Perth Mint for the year of the dragon – absolutely beautiful and very heavy. Mike was impressed and suggested I do a bit of research into what it might be worth now (I paid $600AUS at the time).

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Well, after doing a lot of googling and ebay-scouring and general research I found out that this particular limited edition coin is now worth up to $5,500! People appear to be selling them at lower prices than this, but it is interesting and rather wonderful to find that this random Christmas gift has turned into a worthwhile investment and I feel quite clever.

You should have seen Anthony’s face when I took the coin in to show and remind him, and tell him its value had increased so markedly. He actually grinned! Money does that to him.

Later that day, I was telling Ming about how it all went and he was a little nonplussed at my thrill. But, just as I was about to put Gar’s plastic tomatoes, which have hung in the kitchen for over 50 years, into the bin, Ming yelped “Nooooooo!” So they’re freshly washed and back where they were!

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It is now the fifth week of my experience with Dina, who has helped me to declutter, reorganise and create space where there was chaos. I have discovered, in this process, that I can do such things without the anxiety of Anthony’s hoarding, my sentimental attachment to objects that just made me sad (eg. a pair of glasses once worn my my father), Ming’s fickleness. There has definitely been a bit of a power struggle between Ming and me but I have now reasserted my authority haha!

I have learned so much about the notion of value and it has got absolutely nothing to do with things. Of course I already knew that but the reminder has been wonderful!

44 Comments »

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.

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