I have had a really horrible week – restless, agitated, depressed, apathetic, confused, overwhelmed etc. Partly this is to do with beginning (again!) to read Eckart Tolle’s book, The Power of Now, and subsequently failing in my attempts to stop thinking which is much more difficult than it sounds. It is also due to Ming’s near accident the other day and my psychosomatic reaction. I miss Anthony so much. I do understand that a racing mind can be detrimental to overall health, especially mental health, but the more I try to stop my mind racing, the more it races – argh! I miss Anthony so much. Also, after many months with being/feeling okay about Anthony being so debilitated, and spending many hours of most days with him in his nursing home room, I have suddenly been struck with a new sensation – loneliness. I miss Anthony so much. I’ve never felt lonely before: I love being alone, and I have so many friends, so the reason for this new lonely sensation only hit me today, and it hit me in a storm of hail-stone memories. I miss Anthony so much. Perhaps, Tolle is right in that every single moment I spend with Anthony in the nursing home becomes the new now and, yes, those moments are wonderful. But I miss Anthony so much.
The party
Last Saturday I invited a wonderful friend, Mike, who has done the painting in this house over many decades, for drinks at the nursing home at 3pm and my lovely friend, Mel, and her daughter, Emily, also joined us.
Of course it wasn’t the sort of party we might have had years ago when Anthony’s mother was alive, where the drinks were over flowing and the nibbles plentiful: champagne, pink gins, cinzano, cocktail sausages, oysters, assorted cheeses, pate, and other savouries. Neither was it the sort of party we had in Anthony’s pre-marriage-to-me bachelor days: lots of beer, roast chicken, steak on the barbecue, and, seasonally, crayfish.
It was a much simpler affair with just the five of us and the unexpected addition of a nephew from Perth, but this small number of people easily fills Anthony’s nursing home room and seems like a crowd. Also, despite the fact that none of us could drink much (or anything at all) due to having to drive home, and my bowl of almonds wasn’t popular, the open bottle of red wine, the wine glasses that I had ready, and a few bottles of warm beer, simulated a real party-of-old. We were all quite lively and attentive to Anthony and, thinking about it now, it wouldn’t have worked with any more people because it would have been too overwhelming for him.
After everyone left and Ants and I were talking about how lovely the occasion had been, I felt I’d hit on a great idea for the future. I could invite a handful of his many friends for the same kind of party every now and then; I might even be able to get a few of his friends and relatives that are a bit nervous of the nursing home to come along. Yes! I need to take the initiative here and do a bit of old-fashioned planning and inviting.
The next day, Mike emailed me this message:
Hey Julie, just a thank you for yesterday at the nursing home with Anthony.
I was happy to see Ants in a great frame of mind he is looking so well as to when I last saw him. I was laughing to myself all the way home with his comments to me when i told him that he waited until he was 55 then got married at 57, and he replied ” you’re an arsehole” he definitely hasn’t lost his sense of humour. I thought he was extremely bright also yesterday.
I’m thinking that the nursing home has done him the world of difference in knowing that he is being looked after so well in his stage of life with old age and all that goes with it.
Sadly yes he would still like to be home with his Julie and Ming on the farm but that is not possible now. We all realize that he is in the best possible care .
Family and friends can still get to visit him there for however long they have time to spend with him so long as it doesn’t tire him out, I noticed yesterday that he does tire out.
I will come see him again soon to stir him up or he to me.
It was good to see you again you are looking bright again since I last saw you on the farm the afternoon you brought Anthony out for afternoon visit.
Today, it was very easy to conjure Anthony’s newfound smile by reminding him of the party. This was our conversation:
Me: Wasn’t it great to see Mike again!
Ants: The food wasn’t good.
Me: Okay, so what do you want next time?
Ants: Hors d’oeuvres, you know, the ones ….
Me: That your mum used to make – yes I get that!
Ants: Is she all right?
Me: Who, Mel?
Ants: No, Mum.
Me: She’s fine, Ants.
Thanks so much, Mike, Mel, Em, and nephew Michael for being part of last Saturdays party!
‘The doll thing’
In yesterday’s post I rather clumsily referred to “doll therapy” as ‘the doll thing’ so here is a short explanation: it is simply the provision of life-like baby dolls for people with Alzheimer’s disease and other forms of dementia. Doll therapy, sometimes called “baby doll therapy”, has been used in the care of people with dementia for over 20 years but is still controversial. http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=60&Itemid=81 This morning I did some online research in the hope that I would find some life-like dolls that were less than hundreds of dollars each; alas, they are very expensive. In the dementia house where I work there are two baby dolls that are semi-life-like but, as there are more than two women who love these dolls, we need a few more. Pros and cons: In my opinion, the pros far outweigh the cons of this kind of therapy because I have seen how comforting it is for someone to have a doll in her arms that she sees as a very real baby. However, it can be quite confronting for relatives and even new care-givers to see this kind of simulation unfold and the most common complaint is that it is demeaning and undignified. Now that I have formed a very strong opinion on the pro side, I would ask the person who said the other day, “What’s with the doll?” in front of the woman holding her ‘baby’ in the wheelchair I was pushing, to justify this insensitive comment. But now I get it – I get how ‘the doll thing’ upsets people; it is a sight (mother and baby) that hits the core of the beginning of uncertainty. If Doll Therapy comforts your mother, grandmother, friend, then why do you criticise it? And if you do, at least have the decency to dignify your criticism with a more than once-a-month visit to her. The dolls are more reliable.
Jigsawing Parkinsonisms
When most people think of Parkinson’s disease, they think of dyskinesia which is the involuntary movements, tremors and tics that are symptomatic of the disease. Anthony’s version (called ‘Parkinsonism’) is not like this. Instead, his disease is characterized by bradykinesia – the chronic slowing down of movement.
Big words to match small, sometimes unnoticeable, symptoms. To begin with, many years ago now, I deliberately tripped over these words and many, many more – like ‘idiopathic’, ‘hypokinesia’, ‘ataxia’, ‘dysphasia’, ‘mirographia’, ‘akinesia’, ‘palilalia’ – just as Anthony was undeliberately tripping, literally, over his own feet. I didn’t want to know what those words meant back then; I didn’t want to know what was coming. The glossary below is for those who are curious:
http://www.webmd.com/parkinsons-disease/parkinsons-glossary
The first signs were subtle like Anthony’s inability to open the vegemite jar, and his reluctance to drive the car. But then the signs became more dramatic: Anthony’s increasing stoop, strange gait, the drooling, getting stuck in the back yard and being unable to walk back to the house, the hallucinations, me coming home from the local shop to find him face-down in the vegetable patch, Silver chain home assistance, hospitalisations, drug experiments, nightly toiletting shifts with Ming, Anthony’s apologies, his gradual loss of control over his body, his shame and frustration….
All of these things jigsawed into each other crookedly, violently sometimes; we could not get the jigsaw back together again no matter how hard we tried, because already there were too many pieces missing. A simpler jigsaw needed to be built and learning what those many big words meant has helped frame the centre of this new jigsaw, the centre being Anthony himself of course, and his incredible resilience and acceptance.
One of the most wonderful things that has happened lately is that just when I thought Ants had become totally immobile, the staff told me that his nephew, P, visited on the weekend and Ants was able to use his walker to go outside into the sunshine with P. This nephew visits Ants every weekend, but he doesn’t do this out of duty, he does it because he loves Anthony (and I have yet to meet anyone who doesn’t).
Another wonderful thing is that just when I thought Ants had completely lost his ability to speak coherently, I arrived and rushed to give him a kiss yesterday and he smiled his newfound smile and this was our conversation:
Anthony: You are a wonderful person!
Me: Why?
Anthony: Well, you always find yourself in the most extraordinary places!
Me: What – like here?
Anthony: Yes! You always find me, Jules!
The fact that Anthony’s eloquence, mobility and ability to smile all seem to have come back to some extent, after a long period of struggling with all of these things, is quite strange. I write down all of his extraordinary sentences and am thrilled when he can actually walk; as for the smile, it is almost as if my determination to get that brilliant smile back via any means – including slapstick antics, banter, his favourite comedy series, and just laughing my raucous laugh – has somehow tickled his facial muscles into action again. And, like any exercise of any muscle, the more Anthony smiles, the more able he is to smile. Ming has noticed this and so have the staff and everyone is surprised and delighted.
Does this mean Anthony is getting better? Of course not, but it’s a very interesting turn of events made even more interesting by a conversation I had with a resident whose room is two doors away from Anthony’s. She beckoned me over to where she was sitting in her wheelchair and whispered loudly, “I’ve heard a rumour that Anthony is getting most of the attention these days and is the most popular, but don’t let it bother you because we are all treated well.” Then she guffawed enigmatically and I have yet to decode what she meant.
The other day I told Anthony about Gutsy being killed and he kept reaching out his hand to put it on top of mine.
Over and over and over again – his hand, found underneath the blanket that is always on his knees, and my hand bringing his out into the cold air of a heated room, and his hand finding my hand – a jigsaw of interlaced fingers, a smile, a repeated hand tap.
But, when I was telling Ming about this tonight he said he’d seen Anthony earlier today and Anthony was so confused and blah that he almost didn’t recognise Ming!
Ming: I get it with the smile thing, Mum, but Dad was pretty bad this afternoon.
Me: So should we give up then?
Ming: No!
Me: No?
Ming: I don’t know.
Me: I don’t know either.
The above is not an exact rendition of our conversation but, rather, a compression of many conversations over many months/years. Ming, at 21, is always going to be the vital jigsaw piece that has the elasticity to fit right back in and complete the puzzle, or else wing to and fro.
Par
kins
on
ism
saw
jig
Born with a silver spoon ….
Today is my first niece Ashtyn’s birthday and in around five weeks she will give birth to her and Gordon’s first child. So on the weekend there were numerous celebrations – a mother blessing ceremony, a baby shower, and a birthday party.
Ashtyn is gifted with the ability to be the star at every family gathering without even trying. Her birthday invitation read “The Most Important Day of the Year!” And her favourite present (given by her sister) was a selfie stick which was put to much use that day.
At the baby shower, my mother, “Grandma” now to eleven grandchildren and one great-grandchild, gave Ashtyn two pictures that she had hand-embroidered over the last few weeks, then had framed. She’d told Ashtyn that if the baby were a boy, she would have the angel picture back for another occasion, and if the baby were a girl, she would have the train picture back for the same reason. Ashtyn’s response: “No way! I’m keeping them both.”
I haven’t included the numerous pictures taken of the rest of us because, well, I didn’t want to detract attention from Ashtyn haha!
Anyway, in all the decluttering of this household, I had already found several silver teaspoons and I remembered that Ming had been given one at his christening. So I sorted through the good ones, found a matching spoon and fork, polished them up and then found a suitable box.
I was so excited about this gift for Gordon and Ash’s baby that I did a bit of research into the whole silver-spoon-in-the-mouth tradition and was delighted to find that using silver cutlery is a lot more healthy and hygienic than other materials. Who knew!
Ashtyn is an absolute joy of a person to be around; she is totally, unselfconsciously, gregariously, generously beautiful. I am so proud to be her auntie and can’t wait for all of the mother-and-baby selfies!
Thank you, Jill
In all of the decluttering and re-organising of this household/farm I have made some wonderful friends like Dina (Chaos to Clear), Mike (antique valuer from Australind Timeless Wares and Collectibles), and now Jill and Ray (from Dardanup Heritage Park and Museum). I’ve already provided links to Dina’s service and will do so for the other businesses once I obtain their permission.
I have sold some things to Mike and, this morning, a ute-load of ‘goodies’ from the sheds to Jill and Ray. Jill, whose late husband, Gary, began the heritage enterprise some years ago, now runs the museum with employees like Ray, and a team of volunteers. She is a delightful woman whose enthusiasm for some of the objects was contagious today. Jill likes items that can tell a story and this, to me, is invaluable and I feel privileged to be able to contribute to the stories her museum tells.
Ray, a big, strong, no-nonsense sort of man, single-handedly lifted everything from milk cans to a marble-topped vanity, to an old ice chest, into the back of his ute. Ming and I helped of course but we were distracted by the fascinating information Jill and Ray shared about each of the smaller bits and pieces. And I was able to provide some history of this farm to them too because I knew a bit about Anthony’s family’s predecessor from what Anthony has told me over the years; I also knew various dates.
Anyway, after the ute was full, we had a coffee break and I showed Jill some of the inside-the-house stuff – the hat box full of hats; the roll-top desk; an antique mirror; an old singer sewing machine, the old print we found in one of the sheds etc etc. and bits and pieces of very nice, but chipped, china. Just as we’d done with the shed contents, we agreed on prices for some things and I donated others.
Here are some pics of what will now be at the museum. I am going to be allowed to write something about Anthony’s history which will be displayed in the dairy section of the museum with the milk cans. I raced into town this afternoon to tell Anthony that, if he sold some milk cans to the Dardanup Heritage Park, he would go down in history because I would write something about him.
Anthony: How much money?
Me: Heaps!
Anthony: We need to check with xyz.
Me: Rubbish, Ants – they are your milk cans!
Anthony: Okay….
Okay so I am making some money from this massive cull, but I am also making friends with some really knowledgable people who know the difference between silver-plate and sterling silver (surprisingly difficult to tell sometimes); antique and just plain old; rare and common. I don’t even think Anthony would have known what was in the sheds; after all, he came here at 23 and proceeded to milk cows nonstop for decades.
The most hilarious thing that has happened so far is to do with the old copper washing machine that the heritage people were interested in. I got some advice from someone who said it could be worth $1,000 so I emailed Jill a couple of weeks ago with that quote and she didn’t reply so I got all paranoid-worried and apologised if the price seemed inflated. I subsequently got advice from Mike that it would only be worth $200 max. How embarrassing! But today, we all realised that the stupid copper was cemented to the floor of the wash house so would be impossible to retrieve anyway. Lots of laughs!
Me: Do you want me to get the Dardanup Heritage Park people to come and have a chat with you about the past?
Ants: With Ming too?
Me: Yes.
Ants: Good idea, Jules.
I am not sure how the same heart can splinter but still sing at the same time. This describes my paradoxical experience of the last several weeks since my decision in January to tackle the enormous job of decluttering, selling, finding, giving, keeping, organising over a century’s worth of stuff.
It isn’t over yet; there are still the old photos and documents to get through but it is a beautiful thing to have clear spaces that hold their history inside the dust of imagination.
Thank you for today, Jill – thank you for the hug.
My dad’s birthday
Today would have been my dad’s 94th birthday if he had lived. He died when my brothers and I were teenagers so he never saw any of our children who nevertheless know him as Granddad. My mother was only 43. Dad was only 57 and died in Intensive Care at the local hospital. He had been admitted having suffered two heart attacks and was recovering when he suffered a third fatal one. The shock and grief of that day is something I will never forget especially as I was on the other side of Australia at the time, in Sydney.
The following portrait was done of a photo taken of Dad a couple of years before he died. We all have the photo and the portrait and my youngest brother even has it tattooed on one of his arms.
Herbert Henry Brinsley Lane, who went by the name of Brinsley but was most often called Brin, was a tall, well-built man who had a presence. He was known for his eloquence and his strong silence, was not particularly gregarious, but very compassionate and generous. His love for my mother is the lens through which I remember my childhood.
He had a Charlie Chaplin way of standing which, as a child, I tried to imitate, and a habit of talking to himself when trying to figure anything out. A strict father, he taught us all manner of manners, especially table manners! But he was a gentle giant.
A radio announcer and high school teacher at Sydney Grammar School, Dad made the extraordinary decision in his early 40s to embark on chiropractic studies and thus began our travels – first to Canada (I was 8) where he completed his chiropractic degree, then to Papua New Guinnea (I was 12) to work as a chiropractor on a mission in the highlands, then to Western Australia (I was 15) where he set up a practice. He was a wonderful chiropractor and if patients couldn’t pay, he would accept milk or apples as payment.
Not long before he died, I was on the phone to him about how much I hated the college I was at in Sydney and, despite being a godly man he told me to come home and to tell the college people to “go to buggery!” Those were his last words to me, unforgettable in the way they still make me laugh, and cry, in that I didn’t make it home in time to see him alive for the last time. At the time of the phone-call, there was no indication that he was ill.
In my writing room, I often look up to my right at the portrait of my father and, underneath, a more recent one done of my mother.
Significantly, Dad approved of Anthony when nobody else did, including Anthony! After all, I was eighteen and Ants was 41. After Dad died, I went back to work for Anthony’s mother, Gar, and the rest, as they say, is history.
I often feel the presence of my dad: when I am having lunch with my mother; at family get-togethers; in the nursing home with Anthony; during moments of hysterical laughter with Ming; during those unexpected moments of intense grief; and when I accidentally speak with my mouth full. Sometimes I imagine that Dad is there/here with me/with us, smiling proudly.
Happy birthday, Dad.
So much for the autumn hiatus!
Well my autumn hiatus didn’t last long did it! Neither did my ambitiousness haha! I had another look at the full-time behaviour consultant job description and realised that although it seemed a perfect fit for me, there is no way I could do it and keep my job at the nursing home. More importantly, there is no way I could do it and spend enough time with Ants. I did email the association asking if it might be possible to job-share the position but I haven’t heard back yet. There was a public speaking/teaching component to the job but there were also a lot of administrative duties (of people and paperwork and policies) and the latter does not appeal to me in the least! I’m much better at being bossed than being a boss.
So that’s that for the time being – maybe down the track I will do something like that but in the meantime it’s back to writing, including blogging, for me. And I discovered a wonderful program yesterday that will convert your blog into a PDF document and it’s called blog2print. In just an hour or so and for less than $100 I was able to convert 2000 pages of blogging, from 2011 to now, into seven PDF documents inclusive of photos. For more money the program will also convert your blog into a hard cover book, or books, but I didn’t want that because I want to be able to edit and revise and rewrite all those blog entries into a book about our personal experience with Parkinson’s disease and dementia. I had already begun the tedious job of copy/pasting bits into a word document but it was taking forever partly because of having to read the blog backwards and getting confused with dates etc. It wasn’t until I googled “how to turn a blog into a book” that I discovered blog2print and other programs that will do what would take hours and hours manually in just a few clicks – extraordinary!
Anyway this discovery also reminded me of how much blogging has become a part of my life. Not only is the camaraderie between bloggers a fantastic source of joy, but if I hadn’t written all of those posts I never would have remembered the chain of events of the past few years. I guess what I’ll do now is to print it out in 50-page sections and do the hand-written editing in the nursing home with Ants, then come home and finish the job on the computer. That way I can add material retrospectively.
Also, in anticipation of a blog break, I suddenly felt quite bereft! It is such a great way of keeping a record of things that can easily be forgotten – especially conversations both with Anthony, the women in the dementia house, and with the Ming.
For example, he rather reluctantly came to find me at work the other day and I let him into the dementia house and introduced him to the ten women who he proceeded to charm easily, simply because he is a male, and young! Oh I am so relieved not to be going for that behaviour consultant job. I work this afternoon and I can’t wait! I have never felt like this about any other job and I am very much ‘at home’ in my OT role now. Even though none of the women remember me, I am greeted with welcome smiles and the oft-repeated “Oh you look so familiar. Have we met before?”
Anthony doesn’t remember who any of the staff are either and the other day introduced me to one of the carers by saying to her: “Have you met my wife?” She and I exchanged a grin and a ‘yes’; after all, we have known each other now for over three years.
Blogging helps me to remember and record these tidbit gems, these moments of pleasure and humour in amongst the pain of illness and age. And autumn is a good time to write and be because it is too rainy to go for a bike ride, Mr Tootlepedal!
It might also be a good time to convince Ming to get himself some new shoes. 
Autumn
My clouds hug the sky
cockatoos caw out their joy
and the rain giggles.
Just a little haiku to celebrate our autumn. Every evening when I leave the nursing home, I drive past a spot on the edge of town where hundreds of white cockatoos fill the trees like giant snowflakes, and create a raucous cacophony. They are so loud, it can be alarming if you don’t know what the noise is but I love it! I am not quite sure why there are so many in that particular spot as there are none on the farm; there are plenty of other parrots here but not the white ones. Interesting. Well it is finally raining and the brown paddocks will soon be green again! The faltering wormwood will come back to life, the five acres of lawn will need mowing around the house and everything that looked dead will be reborn (okay, except for most of the roses!) 
The wormwood hedge stretches from where the house is right back to where Ming’s shed is. I remember the days when Anthony trimmed it, then the days when Arthur trimmed it, then the days when Ming said he would trim it, and the days when I thought about trimming it, but, alas, all of those days are gone. Autumn seems a good time to take another blog break so that I can concentrate on some other projects including applying for a job as a behaviour consultant with a local Alzheimer’s Disease organisation. It might happen and it might not but it would be a wonderful opportunity to share some of the lessons I have learned about dementia and communication over the years, including what is happening right now with Anthony and me. It is very hard to see someone who used to be the life of the party reclined crookedly in an armchair in a nursing home. It is also very hard for me to find the words to adequately express how much I love this man, my husband, Anthony, without resorting to cliches. Hence the concluding haiku:
My sky hugs your clouds.
The birds are oblivious.
You hold my small hand.
jmgoyder 