wings and things

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. IMG_4473



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!) IMG_4307 IMG_4505 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.


Unfinished conversations

During my 3-7pm shift today (called ‘the sundowner shift’) I overheard the following tidbits of conversation between one resident, Anna, and various other residents.

Anna: You’ve spilled your food all over yourself!
Sheila: So? Mind your own bloody business!

Anna is a beautifully groomed, very fit and mobile woman in her eighties, but she suffers terribly the loss of her husband because she asks for him nonstop. Most of the staff will tell her that he is busy on the farm and will be in later but, as this is something that has to be repeated over and over, a couple of staff will sometimes remind her gently that her husband is no longer here – that he died. Anna’s silent acceptance of this truth is hard to witness but thankfully her grief is short-lived as she collects her handbag, powders her nose, applies lipstick, and asks again when her husband is coming to pick her up.

Anna: My husband should be coming to pick us up soon for church. Is yours coming along too? We better get ready….
Penelope: I don’t really know if I … my son maybe … he’s the one with the, with the ….
Anna: How’s my hair? Do I need any more lippy? Come on girls, up you get; it’s getting late.
Penelope: It certainly is! We can do it when the time comes over the you know that thing I was telling you….

Of the ten residents in the dementia house, Anna is the one who, on first impression, seems absolutely fine. It is only when you get to know her that her dementia, and associated agitation, becomes apparent. Tonight, after dinner, when most of the residents had been helped by the carer into their pyjamas and dressing gowns and were watching the television, I began to make supper (tonight’s was milo and bananas or biscuits, quite a popular combination). Anna thanked me a few times for her ‘delicious’ drink and gave me a beautiful smile. She seemed so much more content than usual, but, with only six shifts per fortnight, I can’t possibly know what is usual apart from hearsay.

Anyway, I was delighted to overhear this:

Anna: They’re good here, aren’t they. You never have to be perfect.
Dorothy: Yes, dear, very good. Now drink your tea.

The laughter that fills this dementia house is a wonderful, wonderful thing and, in many instances, is due to the unfinishedness of conversations, like Anthony asking me today if I could wash the car in readiness for tomorrow’s trip down south. My pause was followed by “Can we talk about this tomorrow, Ants?”

Anna: Are you cold, love? Do you want me to get you a cardigan?
Ellis: (under her breath) Do you want me to get you a bullet, bossy boots?

Note: Except for Anthony’s, names have been changed to protect the innocent and guilty – ha!



On realising why I woke up miserable yesterday morning when I should have been happy ….

Yesterday evening I suddenly realised why the morning had been so blah, and the reason for this is going to sound absolutely ridiculous. But here goes:

The day before yesterday, Dina, from, came over for the final big job here – Ming’s extremely cluttered (but otherwise beautiful) shed that Anthony and I had renovated for him several years ago so that Ming could have his own space and some independence. Here are the before-and-after shots:
Untitled Untitled 2

After Ming’s shed was done (Dina never stops until it is done!) and we all had coffee and a chat, Dina hugged us and left but, even though I knew we would see her again after the holidays, I felt bereft! Maybe that is what happens when a problem is resolved? You find yourself in an enormous cavern of space (and for me this was both literal and figurative) in which you feel strangely lost.

Thankfully I woke up this morning in a much more appropriate mood, extremely happy with what we have accomplished, and full of incentive to maintain the new order of things. The garage sale is something I need to advertise pronto and I am really looking forward to this as it’s a wonderful opportunity to cull everything from old blazers from my university days, to old bicycles, to Ming’s lego, to bric-a-brac, to books etc. And now that I’ve met the Dardanup Heritage Park people, I have a good idea of what they might want so I will donate some items and sell others. One of the things that appealed to me about their museum’s philosophy was the way in which they enjoy displaying objects in a way that tells a story of the past in a personal way.

Here are some of the items that will go to the museum:

IMG_4482 IMG_4484 IMG_4487 IMG_4488 IMG_4490 IMG_4472 IMG_4504 IMG_4493 IMG_4495 IMG_4508 IMG_4491

Anyway, back to the strange sense of misery I felt yesterday morning: it is probably due to the exhaustion of being so driven to declutter; the extraordinary success of doing so which still seems miraculous to me (I could never, ever have done all of this without Dina); and the incredible journey back in time to an era preceding Anthony and even preceding his mother, affectionately known as ‘Gar’. Strangely, the moments of nostalgia I’ve experienced during the last several weeks of this adventure have mostly been due to memories of Gar and her stories about her own past shared with me over coffee and timtams or else a gin and tonic. She was a pivotal figure in my young life, this 83-year-old woman who commanded the whole household and dairy enterprise with a slight wave of her formidable walking stick, and encouraged my teenage heart in its infatuation with her son, Anthony. On her deathbed she said (after a couple of days of not saying anything and I know this because I was there), “Look after Anthony.” And I have, just as he has looked after me.

When I began this post, I thought I had a simple answer for yesterday morning’s misery but now, having written it out like this, I can see clearly why the whole adventure with Dina has been so cathartic and yet so bittersweet but, ultimately, absolutely beautiful.

I had to go back in time in order to go forward in time. So many memories, and artefacts of other people’s memories, have touched and intrigued me and now, with Dina having finished the big jobs, I have time and space to reflect, pause, re-imagine! Hindsight thoughts are particularly interesting.

Oh shut up, Julie, and go to bed!