Alzheimer’s Disease | jmgoyder

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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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 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 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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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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Feb 25

Whispers
by jmgoyder

“If you listen quietly enough life will whisper its secrets to you”
― Rasheed Ogunlaru

Anthony’s dysarthria is getting worse. Dysarthria is difficulty in speaking and, in Parkinson’s disease, is caused by the vocal muscles not working properly. Except for occasional unwhispered flashes of eloquence (usually in response to visitors or staff talking directly to him and waiting for an answer), his voice now is mostly a whisper.

This means that over a period of hours, Ants and I may only speak a few sentences and that it is mostly me doing the talking. Sometimes I have to put my ear right next to his mouth to hear what he is whispering and often I still won’t understand and he will shake his head in resigned frustration.

At other times, Ants may form meaningful words into sentences that to me are indecipherable. As a result my mind-reading abilities are improving and usually I will be able to figure out what he is saying. Sometimes, of course, the sentences do make sense syntactically, but not semantically, for example when he asks me to move the calves outside his window.

It may be a long way off, or it may be soon, but eventually Ants may not be able to speak at all so I am preparing myself for that possibility by writing down the things he does say as well as the things that I say that trigger his half-smile. I am a bit scared though because his facial expression is mostly pretty frozen (another PD thing) so it may be hard to ‘read’ him.

The contrast between this whispering Anthony and the loud, bellowing, laughing person he used to be is acute but I refuse to allow this to be heartbreaking, and I refuse to revert to the fug of despair I felt so long ago that I hardly remember its blah. There is nothing heroic about this newfound attitude; it’s a matter of pragmatism and survival I guess.

There was a period of time way back when Anthony’s inability to smile spontaneously, coupled with my down-in-the-dumpness, made my visits to him sad and difficult and I would come home in tears. But now it is so wonderful because I look forward to seeing Ants, almost like the teenager-in-love I used to be, and evoking this new half-smile from him easily now, and often, is fantastic fun!

That half-smile highlights our days and Anthony’s whispered “I love you, Jules” makes me feel like the luckiest woman in the world. I so admire his resilience, acceptance and unsadness in the face of this horrible disease. His fortitude and courage continues to amaze me. He is not just my hero; he is a hero of Parkinson’s disease and I salute him.

And every whisper is a weapon against the impending silence.

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Feb 24

A sublime sense of space
by jmgoyder

Dina, from Chaos to Clear https://www.chaostoclear.com.au/gallery.html came over this morning to help Ming tackle this:

Some of the stuff in this particular area was paperwork that I either didn’t know what to do with, didn’t recognise, and didn’t even remember putting there. But most of it was Ming stuff – lego (and lots of it!) brio trains and tracks, and a whole lot of other ‘things’ from Ming’s childhood. As this was Ming’s first experience of decluttering his own stuff with Dina, it was interesting to see his initial reluctance transform into a very healthy ruthlessness and we filled four garbage bags and two boxes with rubbish to be taken to the dump – wonderful! It was also quite moving to see what he was still sentimental about:

While this was happening, I sorted all of my plastic containers, got rid of all my old cook books and only put the Aga cook books in the kitchen drawer, and put all of the paperwork we found into the filing cabinet that is now functioning as a proper filing cabinet thanks to Dina’s labels. Bliss!

For me, the sense of space that has been created is the most wonderful thing! I have never known a cupboard, shelf or drawer in this house to be empty before so I am having a lot of fun thinking about how I can use these empty spaces. Wonderful!

And this is the beauty of Dina’s service; she helps you to cull, but she also helps you to put the things you want to keep back into the new spaces. Dina is way more organised than I will probably ever be, but she has given us such wonderful help and tips and sympathy!

She has also given us her friendship and is even happy to come and help me take Anthony out on occasion. Thanks again, Dina, for your tact, efficiency, respect and empathy. You are a wonder!

We even have a box of stuff to go into the nursing home.

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