jmgoyder

wings and things

Wedding anniversary thoughts

In a couple of days it will be our 23rd wedding anniversary. Over the years, Anthony and I have been hopeless at remembering this and my mother usually reminds me! But, even after being reminded, Ants and I have never done the whole anniversary present thing, just as we have never bothered with the Valentine’s Day thing.

Our love story, in retrospect, is very romantic but we have both been a bit cringy about public displays of affection and have never adhered to expectations around both occasions. In fact, until now, we have never held hands in public. Perhaps, having hidden our romance for so long, when I was younger, and having had such a wonderful platonic relationship beforehand, our friendship didn’t require the usual trappings of romance.

I think that when a romantic relationship begins with a platonic friendship, it is easier to manage the ups and downs of a marriage. I can remember years ago Anthony suggesting that he might one day buy me an emerald ring and silly, young me hoping to get this on my 40th birthday. Instead, he bought me a wonderful lithograph that he had always wanted!

After Anthony experienced my dignified disappointment (“You just bought me something YOU wanted!”) he began buying me silver bangles every Christmas and birthday, picking them out himself during the years before he became too affected by Parkinson’s disease to drive into town. So he began to send me into town to pick whatever silver bangle I wanted, which I did, reluctantly to begin with and unhappy with the thought that I was romancing myself! I eventually quickly began buying my annual bangles at just above Anthony’s budget instructions. It was hilarious to watch his expression when I came home and said, “I’ve found one and I love it, but it’s a bit expensive!”

IMG_4431

Anthony (having always been extremely tight careful with money), would ponder the situation, look at the picture of the bangle, then at my greedy grin, and say, “Yes, okay, Jules.” These were gleeful moments, mischievous and hilarious and as solid as the silver in the bangles.

In light of our current circumstances – Anthony in the nursing home etc. I was tempted to just pretend the whole silver bangle ritual. After all, that’s what I did last Christmas and for my birthday in January. But then tonight I suddenly thought Ants will get a kick out of giving me a new bangle so tomorrow I am going to find one that is really unusual and take it in to get his approval.

Our romance began when I was 23 and now we have been married for 23 years, so I will get the chosen bangle engraved with 23 – yes!

49 Comments »

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.

49 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!

42 Comments »

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….)

40 Comments »

A penny for your thoughts….

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.

IMG_4428

We didn’t find one.

IMG_4427

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.

43 Comments »

Priorititis

Ming and I have very different priorities which is not unusual in a mother and son relationship. This means that he has had a rather bemused, and sometimes annoyed, attitude to the last few weeks of what I have decided to call my “house to home” project. And, due to his man-of-the-house attitude we have had a fair few power wrangles.

So I didn’t tell him that I had booked a lovely couple who run a business called ‘Household heroes’ to clean the windows inside and out. When I accidentally let it slip that they were coming on Monday, he became angry and this was our rather fraught conversation:

Ming: Why didn’t you tell me?
Me: I thought we agreed last week that I was the boss.
Ming: Well, why didn’t you ask me to do the windows? I should be doing it!
Me: Because you’re working full time and actually I think I did ask you.
Ming: No you didn’t!
Me: Well, maybe I hinted that we could do it together?
Ming: Why don’t we then?
Me: So do you want me to cancel the window cleaning people and we do it ourselves tomorrow?
Ming: But tomorrow is my day off! I want to have fun!
Me: In that case, could we do it together next week?
Ming: What’s your problem with the windows anyway, Mum?
Me: They’re dirty.
Ming: So?
Me: I want them to be clean.
Ming: Why?
Me: Because they always used to be clean and now they have been dirty for three years!
Ming: So?
Me: Okay so you want me to ask you to help me with the windows but you don’t really want to and you don’t care that the windows are dirty?
Ming: I don’t care at all!
Me: In that case, I won’t cancel the window cleaners, okay?
Ming: Fine then!

Yes, Ming and I have quite a lot of these circular conversations but, in the end, we can usually stifle our different priorities in order to watch Game of Thrones in the evening.

So the window cleaners came on Monday and did the most fantastic job over nearly four hours, Dina and I decluttered the wash house at the same time, and Ming skedaddled!

The following photos are not remarkable in themselves; what is remarkable is that they are all taken through clean windows. Hurray!

IMG_4413
IMG_4416
IMG_4419
IMG_4421
IMG_4422
IMG_4425
IMG_4426

The thing is, I do understand Ming’s feelings of alarm at all of this tidying up because I guess he has become used to a mother (me) who has been sort of stuck for so long that he has forgotten the lightning speed with which I used to get things done – ha!

And tonight he is making dinner for me! Hopefully this will become a new priority for the Ming – gotta love him!

41 Comments »

Best laid plans

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.

54 Comments »

The Anthony book

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!

30 Comments »

Lost and found 2

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.

IMG_4293

IMG_4203

36 Comments »

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.

IMG_4415

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.)

IMG_4411

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

21 Comments »

Follow

Get every new post delivered to your Inbox.

Join 1,526 other followers