Friendship | jmgoyder

Dementia dialogues 3

by jmgoyder

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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Dementia dialogues 2

by jmgoyder

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

by jmgoyder

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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Mar 22

A penny for your thoughts….
by jmgoyder

One of of the weirdest things about emptying and sorting drawers, cupboards and (next week) sheds, is discovering new things about Anthony via old objects some of which I have never seen before!

Last night our good friends, N and K came over for drinks so that K (a coin collector) could look through the small mountain of coins that we have recently found in every nook and cranny of the farm, even the wash house and sheds! K had a close look through his eyeglass thingy (jeweller’s loop?) at all of the many pennies, and I was fascinated to learn that if we found a 1930 penny, it could be worth $200,000 upwards because only 1200 of these were minted that year.

We didn’t find one.

But K did find a handful of pennies that are now worth a lot more than a penny each so that’s wonderful. Even more wonderful, K is coming back to examine the rest of the pennies, as well as the foreign and miscellaneous coins.

Despite the fact that I hope we find a valuable coin in amongst the hundreds that Anthony either kept or collected in the decades before we got married, I am resigned to the probability that we won’t find that kind of treasure. But there is a different kind of treasure, I guess, in learning about a facet of Anthony’s personality that I didn’t really know about before. I knew he loved coins and that’s why I bought him significant coins for his birthdays, but I didn’t know the extent of his interest until now!

This afternoon, I will do my 3 – 7pm shift in the dementia house with a better focus on the importance of each of the ten women’s past attitudes to money. Interestingly, the Monopoly notes I brought in a few weeks ago have proved to be very popular (and have therefore disappeared into drawers, handbags and pockets!) Last night N bagged up the coins relegated to the scrap metal category so I will take these in this afternoon and spread them over the table and see what happens.

I’ll see Ants before I go on duty of course and I will tell him that his coins are worth a fortune and that we will never sell them. I will also ask him if it’s okay to use the pennies in my job and I predict that he will say what he always says on my work days: “The wheelchair women? The old ladies?”

And I will say yes.

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Mar 17

Best laid plans
by jmgoyder

It has been another extraordinary couple of days with Dina, my decluttering/organising friend. https://www.chaostoclear.com.au

Yesterday morning we tackled the wash house. For those who don’t know, in Australia, people used to have separate-from-the-house facilities for washing clothes, and out-houses for toilet matters. To my knowledge there was never an actual out-house here but the wash house is and I have never had a problem with going out the back door and into the wash house to do the washing. What I have had a problem with, though, is that this wash house’s washing machine has had to share its space with cupboards FULL of ~~junk~~ miscellaneous tools, ancient bottles of cleaning fluids, pesticides, methylated spirits, even old photos and jewellery, old boxes of shoe polish and brushes, funny little tins full of buttons, a multitude of rusty nails, screws, AND the enormous mess made by animal life attracted to the water I guess – lizards, goannas, ~~rats~~ possums, wild cats who tend to have their babies on the roof of the wash house, visiting snakes (possibly), and several years of dead leaves blown in daily because of course there is no door. After all, it’s a wash house! I am beginning to wonder if I am the only person in the world to still think this is a normal arrangement!

Anyway, in less than two hours, Dina and I cleared the cupboards, brushed all the cobwebs out, swept the leaves out and categorised things. Tools went into one box, rubbish into another, stuff for the Ming to decide about into another and we were done!

In retrospect, I am a bit embarrassed that while Dina did most of the dirty work of de-cobwebbing and brushing the walls, I mulled over objects like old hammers and wrestled with what was rubbish and what might NOT be rubbish. But in the end we sorted the stuff and put back the useful stuff and I was able to decide between rubbish and garage sale categories very quickly.

Dina has been sending me summaries, with before-and-after photos, every week, and I have become rather addicted to reading these because of how wonderful the ‘after’ photos are! To have made so much progress so quickly in decluttering and organising this house has been a mixture of exhilarating and exhausting but not once have I shed a tear of nostalgia; instead, I am rejoicing because finally, after three years of sorrow, this house is becoming the comfortable, orderly home it always was. AND for the first time for so long, I know where everything is!

This morning (and that’s where the best-laid-plans theme comes in), Dina and I met at the nursing home at 10am with the intention of sorting all of the hundreds of photos out. A couple of situations came up that prevented us from doing this in the planned time frame but we still managed to sort photos into labelled envelopes (‘family history’; photos Ants might be interested in – old cars, dogs, cows; my own family photos of childhood; and the Ming.) The latter subject – an over-photographed little prince from 1994 to high school – have been kept in photo albums in one of Anthony’s top cupboards to scan and turn into photo books at a later date. I took these photo albums into the nursing home a few weeks ago with that purpose in mind but also to remind Ants and it has been great looking through them from time to time.

It is several weeks now since I first discovered Dina’s service and it is probably the best decision I have made for the past three difficult years to solicit her advice and help. She does this magic trick of holding various things in her hands and asking me, “What do you want to do with these things?” And she always has boxes ready for the various categories – absolutely brilliant!

Thanks again, Dina. The space you have helped me to create in this house and in my mind has helped me (and Ming too I think) to begin to live in the future and not in the past.

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Mar 15

The Anthony book
by jmgoyder

I am finding it extremely tedious and time-consuming (and a bit traumatic) copy/pasting bits of my blog into a possible book about our journey into the land of Parkinson’s so I’ve decided instead to begin to write the story afresh. Going back to the sadder blog posts is only making me sad whereas writing the story with the benefit of hindsight, and from a position of acceptance seems a better way to approach the project. The blog posts are a reliable historical record of events so I can always refer to these, and even quote myself (weird!) if need be.

I don’t want the book to be in any way academic because my last book, We’ll be married in Fremantle, was a rewrite of my PhD thesis so didn’t quite get the interest (or sales!) that it might have if had been marketed differently. For instance, the title of that book in no way indicates that I was writing about Alzheimer’s disease and about how to appreciate the storytelling abilities of sufferers.

Rewriting something seems to me a bigger task than writing something from scratch; rewriting the thesis as a book was a very long process (two years!) so I don’t want to have to do the same kind of rewriting thing with the blog. I have a bit of a problem at the moment with the whole re thing!

Instead, what I want to write is a book that is partly auto/biographical, partly how-to, and partly humorous. I want each chapter to incorporate each of these attributes and to work as a stand-alone essay/story.

Today I saw the biggest smile I have seen on Anthony’s face for a long long time and the carer who came into his room to give him his pills was astounded! He has almost begun to grin again now – incredible! Is my conjuring of daily smiles actually improving the muscle function in his face? If so, maybe some scientific person could research this and send me the findings ha! Hint to the Michael J Fox foundation….

The Anthony book will not be a very big book because I don’t want to repeat stuff that everyone already knows about the hardships of disease and caring etc. I just want to write, in the same personal style I use in this blog, about our slant on the more difficult dilemmas Ants, Ming and I have faced, in the hope that this will be helpful to someone/anyone!

Here is my chapter plan so far:

1. Thinking about the unthinkable (diagnosis shock, incontinence, fear of nursing home possibility)

2. Losing the love story (how having to care for someone takes its toll and affects relationships – Ming’s perspective useful here)

3. Hiding (carer withdraws, escapes, becomes workaholic in her job in order to avoid husband’s constant needs)

4. It’s not just all about you! (finding some sort of balance between young and old, sick and well, angry and happy, sad and funny etc.)

5. Lost and found: Anthony’s smile.

Anyway, that’s what I have come up with so far in terms of structure and content and any feedback appreciated!

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Mar 14

Lost and found 2
by jmgoyder

During one of my shifts in the nursing home the other evening, I was chatting with one of the carers who had come down to the dementia house to help with supper (in order to give the carer I was working with her own supper break). As we made the milos, and cups of tea and served the ten women residents, she chatted about how much she liked Anthony and loved working in his section (high care). She even described situations in which, when he was asking for me, she would quip, “Well I’m your mate too, buddy!” and they would share a bit of banter despite the fact that his retorts are now mostly whispered.

On the days when I am not on duty but simply sitting with Ants in his room, this particular carer will drop in and banter with Ants while I watch, happy and grateful that she, and many of the other carers, domestic staff, kitchen staff and supervisors, like him so much.

I have now told all of the staff to answer his constant question of “where is Jules?” with “Jules will be back soon.” This works quite well in covering the hours I am not there – early morning/late evening – but it probably wouldn’t work if I didn’t spend big portions of the daytime with him.

Anyway, I told this particular carer that he used to be a very loud, laughing, life-of-the-party bloke and she was amazed. I was a bit amazed by her amazement until I realised that of course he now presents as a very quiet, sleepy, incoherent, expressionless old man, diminished by the Parkinson’s.

Now that we are entering the fourth year of Anthony’s time in the nursing home, his physical deterioration is starkly evident however his ability to smile has come back! I am thrilled because for a couple of years there was no smile – not because he was unhappy exactly; it was more to do with his facial muscles not working due to the PD.

Around a year ago I made it my goal to make him smile every single day and I mostly tried this with banter, teasing, tickling, dancing, toilet jokes (sigh), and funny reminiscences. Well, this has worked! And the fact that some of the carers understand/intuit his need for banter, and play the game, is brilliant.

To see this beautiful man’s lost smile come back is the most amazing gift; it takes a bit of conjuring but it always happens and it is like magic to me! When I leave him to come home all of the tears I might have shed are absorbed into a great big grin.

Lost and found: Anthony’s smile.

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Mar 13

Lost and found 1
by jmgoyder

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

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.)

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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Mar 8

Time, times, timing and a riddle….
by jmgoyder

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.

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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Mar 5

Values
by jmgoyder

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?)

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).

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!

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!

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