wings and things

New kid on the block (and the reason I haven’t been blogging lately)


Well, here she is – Pip – a miniature schnauzer who is just eight weeks old. Once she has had her next vaccinations, I will be able to take her with me to see Anthony and other people.

The story behind her name: years before Anthony and I were married, I lived in a little cottage a few kilometres from his farm. I was undertaking my first year of university studies and feeling, I guess, a bit isolated. I was also suffering a severe case of ongoing unrequited love for this beautiful but idiotic older man who, instead of proposing, bought me a miniature dachshund puppy that we called Pip.

That Pip was the most beautiful gift, and the best friend I had ever had until she died many years later.

I was recently reminded (via a photo) of the special bond I had with that first Pip and how her company helped me through doing all of those assignments in that small cottage all alone. I was only in my 20s then and terribly naïve; I couldn’t understand why Anthony didn’t love me back. It is only in retrospect that I realise how taboo it would have been for him, a middle-aged farmer, to contemplate a romance with me.

So, instead, he gave me Pip.

And now we have a new Pip and I am, once again, not alone.


Dementia and hallucinations

Yes, I am still working through past blog entries in order to formulate a book, but I keep getting distracted by the present.

I don’t think even the scientists know whether the hallucinations people with Dementia experience, especially those with Parkinson’s Disease Dementia, are part of the actual condition, or a side-effect of the medications.

Tractors pulling Anthony’s trees down; long-lost friends and family (some deceased) visiting; a multitude of strange children making mischief; a room full of calves and dogs; a pirate ship; the strange ‘teacher’; the terrifying kidnappers; the wondering where I am ….

….even when I am right there.

After the terrible fright of a few months ago, when I thought Anthony was going to die, he has resurrected and, in his own words, is “better now.”

This month marks five years that Anthony has been in the high care section of the nursing home. He has outlived all of his prognoses (advanced prostate cancer, advanced PD) by years; he has somehow survived liver disease and kidney cancer. The Dementia component has been there all along but has only become noticeable over the last couple of years.

Dementia is, of course, very confusing for the person who has it but it is also confusing for the person caring for the person with Dementia. Moments – even hours – of lucidity can sometimes be punctuated with such bizarre stories that the carers are at a loss as to how to respond.

Even me, who loves him so much. Even me.

Recently, I have become so tired: of pretending I have to go to work (as way of leaving); of missing him; of this never-ending grief; of wondering whether he is okay when I’m not there. I have had to let go of the latter for my own sanity but I still worry about whether he is too hot or too cold (these thermostatic problems were the bane of my life when Ants was still at home.)

And what about Ming – our now 23-year-old son? Anthony sometimes mistakes him for a nephew and doesn’t recognise him as his only child. I don’t know how this feels as Anthony always recognises me, even if he is confused.

Ming is often ‘seen’ by Anthony in the corner of his nursing home room – as a toddler – and this particular hallucination gives Anthony immense delight. So I go along with it; what else can I do?

Perhaps the trick with Dementia-induced hallucinations is to go with the flow unless the particular hallucination is troubling.

Me: Nobody is cutting your trees down, Ants!

Anthony: Yes, he is – just look!

Me: I think it might just be your imagination and the Parkinson’s Disease?

Anthony: You always say that.

Me: Do you want me to get Ming to check it out?

Anthony: He’s too little, Jules.

Me: No, he’s a man now, Ants, and he can fix everything!

It is perhaps the ongoing, repetitive loop of the same conversation that can sometimes exhaust the carer. On the other hand, it’s familiar territory and I love to insert a bit of humour into the same old conversation and can sometimes make Anthony smile by saying “Are you totally insane?”

Yeah, bleak humour can sometimes be useful when it comes to Dementia-induced hallucinations.

And I am, and will always be, grateful to Anthony for teaching me so much about this often misunderstood and complicated condition.








The Anthony story: (notes on writing)

Of course I don’t want to call this book The Anthony story (boring title!) but it’s a working title for the moment and allows me to quickly reference posts that are about Anthony’s PDD. I did this way back with the Love story posts and, more recently with the Dementia dialogues posts but unfortunately I keep giving up on my writing goals.

I really want to write something that makes a positive difference to the lives of people with Dementia and those who care for them (friends, family, staff).

Of course Anthony’s story is already written on my blog, in an intermittent way, over the last five years or so. I think, if I were to do nothing else but rewrite/edit this story, it would only take a few weeks. But I keep hesitating, hibernating, hiding….

I’m not quite sure why I have such a sense of fear in writing this story. Perhaps it’s to do with my self-consciousness about the fact that this story is actually about me more than about Anthony. Yes, I think that’s it! After all, Anthony is mostly content whereas I am sometimes a mess.

Those of us who care for a loved one, either at home, or in a nursing home, are probably the most unnoticed group out there. Red Cross, Bethanie and Alzheimer’s Australia groups have now begun to acknowledge and support this growing group of people and I feel so glad to be part of this.

Me: I am writing a book about you, Ants.

Anthony: No, don’t do that, Jules.

Me: Why?

Anthony: You talk too much.

New title of book – Dementia adventures?


The Anthony story: Chapter 1.1


I remember being absolutely terrified and, when I look back, I realise that my terror was simply a reflection of Anthony’s fear of the unknown I guess. The view from his window was, and still is, of a lawned area which I am so grateful for because now that is where he ‘sees’ people and livestock and dogs, via his hallucinations.

He had been hospitalised so many times during 2011, that it was a surprise to me that there was no television. Hospital rooms always have televisions and Anthony was used to watching the news channels. I didn’t want to leave him in such quiet emptiness so I raced down to the closest shop and bought him a television and got it working that day. I remember feeling a sense of desperate urgency that he would have something/anything to distract him from the fact that he was being left there.

January 2012: The bed looked so small, the wardrobe looked so large, the walls looked paint-chipped in places, but all in all, it was satisfactory. I can’t remember who did the admission interview and Anthony, of course, no longer remembers any of it, but at the time it seemed a terse introduction to a respite situation that, just weeks later, would become permanent.

During those interim weeks between respite and permanency, I was busy with looking after Ming in Perth, 200 kms away – his pre-operative preparations, the spinal surgery itself, and his post-operative recovery. I remember racing back and forth from the hospital in Perth to the nursing home in Bunbury and reassuring Anthony that Ming was fine. Back then, despite Anthony having very clear signs of Dementia, he understood what was going on and why he had to be in the nursing home. Nevertheless,  he argued with me that he would be fine at home on his own and I had to keep reminding him of his falls (back then I only had to turn my back for a second and I would find him toppled on the ground).

I don’t think there was any question of Anthony being permanently admitted to the nursing home at that time. Certainly there was no question that Ming’s post-operative health would be my priority. So the fact that Anthony’s nursing home room became available in a forever way was both a relief and a shock. Anthony and I had numerous discussions over the week we had to make the decision and all of those conversations are now a blur to me. But I do remember him conceding in the end; his pragmatism took over and he didn’t shed a tear as we signed the forms. I can hardly bear to think of how abandoned he must have felt, but I do remember how the hot tears burned through my body, my eyes, my skin, during that first year.

It’s so different now! The Dementia component of Anthony’s PDD has made it easier for me to convince him that all is well on the farm, to thank him for fixing the fences yesterday, to talk about the party we had last night, to ask his advice about toilet-training little Ming, to fixing pumps, how to cook his mother’s salmon mornay, or do I look better in a skirt or jeans.

Whenever you enter a virtual game, emerge from a dream, or find yourself identifying with a character in a novel, or a blog, or a movie, you are going to come face-to-face with the difference between real and unreal.

Yesterday Anthony thought he saw a close neighbour, Mick, on the lawned area outside his room. As usual I went along with this. Then, this morning, I bumped into Mick at the local shop (I hadn’t seen him for years.) Such a strange and wonderful coincidence!

Yes, Dementia has its tragic sides, of course, and every single individual’s experience of having this disease is different. I have learned how going with the flow is sometimes not enough; sometimes you just have to go with the moment-by-moment situation.

When Anthony says, “I don’t understand what’s going on, Jules” it breaks my heart. But when he says, “I’m glad we painted that wall blue” (the wall behind his television), it is the perfect opportunity for me to begin a conversation, no matter how bizarre, and we can even have a laugh.

After all, when the ‘now’ Anthony was the ‘then’ Anthony, he would never have had a wall painted blue.










The Anthony story: Chapter 1

Having decided to write a book about my husband’s Parkinson’s disease dementia (PDD) and how our son and I have dealt with Anthony’s condition, I reluctantly went back to blog entries.

My reluctance was only due to the fact that we are now coping well, so I didn’t particularly want to re-visit the traumas of Anthony’s escalating disease, his admission to the nursing home, and the hearbreaks of that era.

Nevertheless, I did go back in time, via my blog, to discover that during the December of 2011, Anthony was in a Perth hospital for the third time, with a specialist trying to get his PD medications ‘right’. Not long after he came home, he had what I now know was a TIA (a mini-stroke) and I called the ambulance. The hospital experience was frightening as Anthony became totally disorientated.

As Ming was due for major spinal surgery for scoliosis in early February, we gratefully accepted the respite room, at a local nursing home, for Anthony from the 4th January, 2012. This was a godsend as I knew I could no longer leave Ants alone on the farm and I needed to be in Perth to look after Ming post-op.

On January 24, 2012, Anthony’s respite room became available permanently and we had a week to make that decision. Even thought it was a mutual decision, between Ming, Anthony and me, and we all agreed, the pain of this decision was ghastly and, for me particularly, agonising.

I wish that I had known then what I know now, about how to make this experience better. Back then, Anthony wasn’t as confused as he is now with Dementia, so he must have felt abandoned regardless of how many hugs and words of comfort I gave him.

Today, he removed my hand from inside his and carefully placed it on his table.

“Why did you discard my hand, Ants?” I asked

“I thought it might need a rest, Jules.”





A back-stepping narrative

It is the first day of another new year and I have made the decision to use this blog as a test-run for a book about the personal journey Anthony and I are still experiencing with PDD (Parkinson’s disease dementia). Having printed out thousands and thousand of pages of blog writings (over five years!) my initial idea was to go back to the beginning but, at the moment, this is too bittersweet and the nostalgia of ‘wings and things’ is ironic as most of our winged creatures have been re-homed. I think this is significant in our journey but I am not sure how yet. I guess, in losing those winged creatures, I have learned how to deal with loss, and sometimes with death.

To write a book about PDD, with a specific focus on Dementia, seems ambitious, but I really want to do this in order to demystify this mysterious disease. Another reason to write a book like this is to demystify the nursing home experience and to honour the carers.

When I left Ants today to come home, he tried to get up from his armchair several times, so I explained to him again and again that I had to go to work. He wanted to accompany me and kept saying “I don’t understand what’s going on, Jules.”

To leave him like that is ghastly and I worry of course. But I know he is in good hands and I know that tomorrow he will be fine again and happy to see me.

Happy New Year!