Grief | jmgoyder

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 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 2

Taboo topics
by jmgoyder

I am always very careful not to write details of our story on this blog that might embarrass Anthony. The taboo topics are to do with matters of the groin area: sexuality, ablutions, incontinence, libido, that kind of thing. These topics are not taboo for Anthony and me of course and actually provide us with some rollicking conversations in a slapstick comedy sort of way and some of his male friends who visit love to tease him about his past exploits (not me, I can assure you ha!)

One of the things that most amazes me when I watch various television shows/series is that no matter how long a particular character is trapped, or imprisoned etc. he/she never seems to need to go to the toilet (I think Nicole Kidman was one of the first do so in her last movie with Tom Cruise – not sure).

Anthony is utterly unembarrassed by incontinence and made me laugh my head off the other day when he said, “I hate having a wet nappy!” when I tried and failed to get him to the toilet in time at the nursing home. Unabashed, he said, “Those kids will help me soon” (he calls all of the staff ‘kids’ for some reason.

But even writing the above paragraph makes me worry that (a) this would embarrass him; and (b) that relatives and friends who read this blog might think this is ‘too much information’. However, whenever I present my worries to Ants and/or read bits of the blog to him, about him, including the above, he reassures me with his half smile. He has a very healthy ego! Libido is of course another taboo topic but the hilarity with which Ants has approached this now diminished capacity (“This is a gold bar”) is, I think, an important part of a story of extraordinary resilience.

I remember thinking, years ago, that if this or that were to happen I would not be able to cope any longer. I was right; when this and that happened, the nursing home idea saved us – our marriage, friendship, love.

If I write the Anthony book, I want to be honest about these taboo topics; I want to demystify them, make them less scary, put it out there for those who are going through the same kind of thing.

Off to the toilet now!

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Mar 1

Writing
by jmgoyder

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.

The irony of my one and only published book (about Alzheimer’s disease) is that I had no idea, at the time, that my own husband would one day look at his windowsill and ask me to get the dog out of the room.

http://www.fremantlepress.com.au/books/1039

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Feb 28

Gutsy
by jmgoyder

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:

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

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

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.

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

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

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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Feb 27

Dusk
by jmgoyder

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):

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:

Blue wren:

Flame trees from dog yard with one of our many Christmas trees somehow flourishing in the heat:

Blaze again:

Feeding time – that’s Gutsy9 in foreground:

The last figs:

And, just a moment ago, Ming’s best friends about to take him out on the town:

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!

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