wings and things

“I have accepted my Parkinson’s.”

Today I met one of the Anglican priests from my mother’s church (well, it’s my church too but I hardly ever go), because I had asked her to pray for me and my pompholyx and for Ants too. She is a beautiful person about my age who came out to the farm a few days after Ming’s car accident and prayed for us and for the whole family, and her name is Sarah.

We met in the parking lot of the nursing home at 1.30pm which was, coincidentally, the same time my mother was planning to meet me to visit Ants. I would have gone into the nursing home with Sarah but unfortunately, after showing her my hands, I burst into tears so had to ring my ma and say Sarah and I would do the praying thing outside and come into the nursing home presently.

So Sarah and I found a seat outside and she prayed and anointed my hands and blessed me while my nose dribbled as I stopped crying. Neither of us had a tissue so I had to wipe my nose on my shirt before we joined my ma and Ants.

They were sitting outside in a little garden area and, after the introductions and greetings, not knowing how much time Sarah had, I got straight to the point.

Me: “Ants, remember how Sister R. used to come over and anoint you with her holy oil?” (Sister R. is a Catholic nun who has been our friend for decades and, despite Anthony not being the least bit religiously inclined, he used to love this).

Ants: “Yes.”

Me: “Well Sarah can do that now.”

Sarah: “Do you want me to, Anthony?”

Anthony: “Mmmm.”

Me: “Yes.”

So Sarah prayed for Ants and anointed him and then we all sat back and had a conversation.

We talked a lot about life, the accident, our kids (Sarah has a daughter nearly the same age as Ming), my mother’s unfortunate collision with a glass door the other day, and my hands. Then Sarah asked Anthony various questions – about his childhood, his siblings, Ming and so on – that elicited answers. I admired her skill at drawing him out because his conversational skills are now very hesitant. Sarah was also very good at waiting silently for his response – fantastic!

Then, in answer to a question about something entirely different, Ants suddenly said this: “I have accepted my Parkinson’s and I still have the power to swear at people I don’t like.”

Oh how much I love this man!

Thank you, Anthony.
Thank you, Mother.
Thank you, Sarah.
Thank you, God (but only if you heal my hands and foot).

On the other hand, maybe I will have to accept my Pompholyx, just as Anthony has accepted his Parkinson’s disease.


An apology to my hands

I have always taken my hands for granted. Not only that, I didn’t like them and I often said so to my friends. I hated my short, stubby fingers, peeling fingernails, freckle-wrinkles. I even did the fake-fingernail thing for awhile, the expensive hand moisturizer-guaranteed-to-remove-freckles-and-age-spots thing. Was I crazy?

It is now two months since this weird disease attacked my hands and now my left foot. I have been back and forth to doctors and have been on steroids, antibiotics and, as of yesterday, anti-fungal and anti-histamine stuff. Pompholyx: interesting word and no definite cure.

How was I to know that a seemingly simple little finger-blister thing, that occurred two months ago, would turn into a recurring nightmare over and over and over again? I can’t do the dishes, open a window or anything else that requires my hands (thank God I can still type). My hands and one foot are bleeding, scabby, blistering, itchy and, therefore, useless!

So please, hands, I’m sorry if I insulted you. In retrospect, I realize you were beautiful, wonderful hands, so please come back so we can be a team again. I never knew how much I needed you until now.


Things that go bump in the night

You know the other night when Ming and I had that argument and he fled from my wrath to his shed? Well, the argument was about the fact that even though he moved into his shed months ago, he still hadn’t cleared a lot of his stuff out of his bedroom in the house. I had been extreeeeeeeemely patient about his procrastination until that night, when I snapped, the reason being that this bedroom was to become my new office so that I can get out of this little back veranda hovel that the mice like to invade (they like paper).

After Ming stomped off to his shed, muttering things like “You always make me feel so bad”, and me shouting, “Just clear your stuff out tomorrow or I will chuck it all out the front door!” he and I reconciled via texts and he promised to do the job the next day.

Well he kept his promise because at exactly midnight I was awoken by some very noisy activity in his ex-bedroom (which is adjacent to mine). I lay there grinning like a hyena listening to what I realized was Ming moving his stuff out of that room. This went on for about an hour and then all was quiet again, I tiptoed into the next room to find it totally empty! Elation! Then, on the hall table, Ming had left a long list of things he would do when the sun came up. I grinned again and went back to bed.

It wasn’t until after breakfast, that I discovered that he had simply moved all of his stuff into the living room! But it’s okay now – all of it is in his shed which now resembles the chaos of a crime scene (what happened to my neat and tidy boy?)

But my room is ready for me now and I am so excited! It is a room with lots of history because it used to be Anthony’s mother’s room, then it was the office where I wrote my PhD, then it was Ming’s childhood bedroom. We have now taken the huge musk-pink carpet mat out (over 40 years old) to reveal the beautiful jarrah floorboards, and Ming has vacuumed from corner to corner and cleaned the windows inside and out, and we have arranged for a handyman to fix the cracks and holes in the wall and ceiling. Then we will get my painter friend in to paint it crimson (just joking – white!)

It is a big, light-filled room with a view to the front paddock from the north-facing windows. That’s where I will put my desk, computer etc. tomorrow!

The interesting thing about this little adventure is that, for me, it feels like I will have my own beautiful space in this house for the first time in 20 years. It’s not that I felt deprived but, having married an older man and moved into an already established household, I have never quite felt a sense of ownership and, in terms of making any sort of mark, I have done very little in the way of interior decorating, renovating or changing anything – so much so that when Anthony’s relatives drop in they feel they have stepped back in time!

I have decided to call this old/new room my writing room. A new beginning. It will be wonderful to move out of the hovel of an office I am in now where things go bump in the night constantly, especially in the ceiling where rodents, goannas and possibly snakes have sprinting competitions.

Ah, the joy of change!


Taboo topic: poo!

We all do it but, after the age of around 4 or 5, it becomes a bit taboo to talk about poo. It is an intrinsic part of everyday life but is clothed in secrecy. In nursing homes and hospitals, however, the activity of the bowels is all-important: “Have you used your bowels today, Mr Smith?”

Years ago, when I worked in a hostel for multihandicapped (I don’t know if that is the politically correct term any more; suffice it to say that all of the residents were people with both intellectual and physical disabilities), we had a chart in the shared bathroom in which we had to record daily poo production in cups. Don’t get me wrong – we didn’t use cups, but we had to look at what each person produced and imagine how many cups it might equal.

As a nurse and/or care-giver, you get so used to poo that cleaning it up becomes more of a tedious than a revolting job. At least now there are plastic gloves and pull-up adult nappies which makes things a lot easier on the carer and the sufferer.

I don’t want to personalize this into an Anthony-and-Julie situation here; I just want to speak generally in a way that kind of (hopefully) demystifies this particular type of incontinence and makes it easier to cope with.

The first time it happens it is, of course, humiliating and ghastly for the poo-victim and quite frightening for the carer. Above all, do NOT make the person feel worse than they already do. The next thing you need to do is to remain extremely calm and pragmatic. Just do what you have to do as quickly as possible and try to remember your 5-year-old poo jokes. The ability to hold your breath, and the invention of room deodorizer, are good additions to the situation.

My point: being able to use your bowels means you are still a living, breathing, eating, functioning person, so pooing is a very good thing. So rejoice in the poo! Don’t be afraid of it! It is normal!

It can also be a great conversation starter: “Remember the time when you ….?” Raucous laughter may sometimes accompany these conversations, which is a hell of a lot better than misery.

Just saying…. it might be you one day.


Tomorrow is always waiting for you.

Today was pretty awful and was made worse by a mother/son argument that escalated into recriminations, guilt, and ‘walk away’ tactics. To some extent, this worked but Ming and I were still so miserable – he in his shed and me in the house. So we began texting each other and have now established that I am the boss and he is the slave and he has even called me ‘Commander’; this is a good move.

Oh the joy of tomorrow! Of course tomorrow brings a fair few uncertainties but it mostly brings the excitement of anticipation, adventure and something new and fresh … and a new Ming, a new me and, maybe, a new Anthony!

Tomorrow is a gift.



I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.


A conversation with dementia

I realize that the title of this post sounds odd but sometimes, in my conversations with Anthony, it is as if I am talking to two people: 1. Anthony-familiar (Ants); and 2. Anthony-with-dementia (AD). Here is a rendition of today’s conversation in the nursing home.

Ants: When did you get here?
Me: Right this minute.
Ants: Where did you come from?
Me: Home.

AD: Ming and I got all of those calves rounded up and into the paddock in front of the house. They are all in good condition.
Me: Oh! When did you do this?
AD: Yesterday, after you left. We also fixed the fence.
Me: That’s fantastic – thank you.
AD: You don’t need to thank me – it’s my job.
Me: Yes, but it’s a relief to know all of the calves are okay and the fence is finally fixed. I was a bit worried.
AD: Ming is a good worker.
Me: Well you and Ming are a great team. It’s wonderful that you are teaching him how to do these things because I wouldn’t have a clue.
AD: We just need to fix up the other boundary fence now [trying to get up out of his chair]
Me: Well Ming isn’t here now so can we wait until tomorrow when you come home?
AD: Okay.

Ants: Bloody rotten about Ming’s back.
Me: Well your back isn’t the best but look how well you coped.
Ants: I think his is worse. He could have done anything if he didn’t have that back.
Me: We just have to accept it now, Ants – Ming has.

AD: I’m still going to need his help though, on the farm.
Me: Of course!
Ants: Tomorrow?
Me: Yes.

Tomorrow is Sunday so I will be picking Ants up around 10.30am to come home for the day, and Ming will take him back to the nursing home in the afternoon. Ants has requested smoked salmon and avocado sandwiches so that is easily done.

I would be lying if I said I am looking forward to tomorrow because, no matter how much I want Ants home, and no matter how much he will love being home, it is going to be an extremely difficult day for Ming and me. There will be a lot of lifting, toiletting, confusion, frustration, barely restrained angst (Ming), and barely restrained sorrow (me). By 3pm Anthony will begin to falter and by 4pm he will be unable to walk at all so I will have to get Ming to take him back to the nursing home at 3pm and Anthony will get upset.

On the other hand, perhaps I should just alter my thinking a bit. We will have four hours together, the sandwiches will be delicious and we will give Anthony a million hugs. In fact, I reckon the whole hug thing is underrated because, during today’s conversation, I decided to give Ants a hug every time it got a bit too confusing for me and his big/small arms around me were much more powerful than any words.

I will just have to tell Ming to go easy on his habit of hugging Anthony rather ferociously because it scares the hell out of Ants!


Dementia and bewilderment

Yesterday afternoon Ming and I visited Anthony at the nursing home in the late afternoon. I had blue cheese, crackers, olives, pate, pistachio nuts and ripe plums. We had a bit of a feast together and everything seemed okayish except that Ants was quite confused (which is normal after 4pm).

Then, when we went to leave, I kissed and hugged Ants and told him I loved him but his face was stony. Ming lingered a little longer with Ants and told me later that Anthony had said, “I don’t know why I love her any more.”

Of course I was very hurt to be told this but I explained to Ming that Anthony has these extremely lucid moments in the late afternoon (in amongst the confusion of not quite knowing where he is, temporally and geographically) where he feels/KNOWS he has been abandoned.

“Who will help me get to bed?” Anthony had asked me earlier.

“Where am I?”

“Will you tell the somebodies that I am here?”

“But where are you living?”

I am much more patient with Anthony’s confusion than Ming is – of course – and Ming finds it difficult to match this very sick, old man with the guy I fell in love with all of those years ago. Telling him stories about the way his dad used to be helps a little, but not much, not any more. Stories about Anthony’s robust energy, laughter and farming prowess fall short for Ming because he has no memory of the Anthony-before-illness. None.

Sometimes I wish I could give Ming my own memories of Anthony but I can’t.

And yet, when I see Ming talking to anyone and everyone, and being the life of the party, and taking over various responsibilities on this farm, I see Anthony all over again – the way he was – and his Ming clone buoys me up!

Anthony’s bewilderment is mine too and it is very hard to realize now that he thinks I have abandoned him. “I don’t know why I love her any more.”


The Land of Blah

For several days now I have been in and out of the Land of Blah – you know, that place where, even when you stub your toe badly, you can’t be bothered saying ‘ouch’. It’s a funny sort of place, this Land of Blah, but not in a way that makes anyone smile; smiling is kind of frowned on here because it depletes energy and you need energy to get out of the Land of Blah.

I never choose to visit the Land of Blah but sometimes I accidentally wake up there (nightmares can do this), or else I am sitting with Anthony in his room in the nursing home and I am transported into the surreality of his confusion so much so that his blank expression becomes mine.

Sometimes I meet people I know in the Land of Blah and it shocks me. ‘What are you doing here?’ I feel like asking them but of course I don’t because it is a place of such silent mystery and private misery – a paradoxical place of in-between.

I don’t like it in the Land of Blah so I usually manage to clamber out and up into my normal life. And this is what I see: a beautiful peacock family.







Robyn's photo

And the Land of Blah once again recedes into its own grey nothingness.


Sitting ducks

I have a new respect for birders and people who take photographs of wild birds. This morning I went outside with my camera specifically to take photos of wild (as opposed to tame) birds.

There was an abundance of course, all flying to and fro, landing in the trees, frolicking on the lawn, singing raucously, and playing hide and seek (from me!)

So I had to content myself with my happy-to-pose-for-you sitting ducklings.

Here is one of Michael Jackson who has developed some stylish markings on his head:


And here are Misha and Freckle:


I will keep trying with the wild birds ….