wings and things

Five seconds

Today, I experienced, for the first time, five seconds of what I always knew was inevitable. For five seconds (and I know it was exactly five seconds because I kissed Anthony five times – three on the nose and two on the forehead – all in quick succession, to remind him….)

It’s me – Jules!

A syllable for each peck of a second.

This is the first time Anthony hasn’t recognized me and, even though it was only five seconds, it is good to have had that little taste of forewarning/arming because I still have time to develop some tactics and hopefully some wisdom.

When I told my mother about the five seconds of unrecognition (yes, ‘unrecognition’ is a word – I checked) she squeezed my hand but I quickly reassured her that I was fine with this first of what will be many unrecognitions. (It’s kind of weird being comforted by your 79-year-old mother about your 78-year-old husband!)

In what I think will be the near future, the challenge for me will be in how to reassure Anthony that I am indeed Jules, his wife, without embarrassing him. I know this because lately he asks a lot for his mother and many others of his family who are now deceased. Sometimes I say they are all well but very busy but sometimes (for example if he is distressed, as he was for his mother again the other night), I will gently remind him that she is gone.

I was thrilled today to have a conversation with a friend of mine, Ann, who now works as a clinical instructor at the nursing home (she and I both left our jobs at the university at around the same time). Ann told me that she has been showing all staff, including domestic staff, a DVD about Parkinson’s disease that explains, among other things, why someone with PD can sometimes walk, and other times be totally unable in which case encouraging words are useless. Interestingly, the DVD also explains why a person with PD may not respond to a greeting, and therefore appear to be unfriendly. Ann told me that she pointed out to the staff that people with PD need time to process the greeting and should, instead of rushing past with a “Hi Anthony!” and disappearing, wait for his response.

After all, it only takes around five seconds for Anthony to say “hi” back.

On the other hand it only took one second for Anthony to say “Rubbish! Throw it out the window” about the cupcakes I made for him last week!

The kiss Yes, I know I’ve posted this photo before but I love it!




It was because we were friends first – you my ‘big brother’ at 40ish and me a kid at 17. Is this why I continue to need to be close to you for most of every day now?

I ADORED YOU, so much so that your mother noticed and winked and encouraged, but you were too respectful, and I was too innocent. When you take my hand now, you smudge it into yours. My hands are small and yours are large but, when we have an arm wrestle, I have to pretend to be weak.

I remember how you gentled a more vivid blush into my cheeks than usual, when, for the first time, you took my hand and dragged me outside to see the once-a-year bloom of the moon-flowers. Now, contrary to your theory, the moon-flowers bloom haphazardly, unpredictably, and more than once a year.

Today, you couldn’t form words, so you were mostly incoherent, and totally confused and it was a bit of a struggle for me, but my presence helped, I guess – and when you seemed to be asking me something with your sliced up words, I just kept saying yes and you were okay with that.



I am so fortunate

I awoke to a soft wind that sounded like a distant ocean. Its breath cooled my face and stroked my hair. Through the window I watched as it choreographed so wild and unpredictable a dance for the blossoming pear tree, that the giggling wrens couldn’t keep their footing and toppled. More and more birds arrived as if to join a game – doves, parrots, willy wagtails, crows, butcher birds, their laughter contagious, raucous, fantastic. I could see all of this from my bed but suddenly I wanted a closer view so I leapt out of bed and pressed my nose against the screen of the open window. There, beneath the tree, stood all of the peafowl, spread out in a circle on the sun-dappled lawn, their feathers frolicking out of control. And that’s how the wind made itself visible to me this morning.



I used to miss the Anthony of the past terribly – the robust, energetic, boisterous, fun-loving Anthony with the loud laugh – and I still do of course. But lately, I’ve begun to realize that I also miss (and much more-so) the Anthony of now, the Anthony who still IS. In our mutual acceptance of the way things are now – his Parkinson’s disease, the nursing home, our forced “illness separation”, and even the increasing confusion and hallucinations that accompany his dementia, I now find myself anticipating my daily visits to the nursing home with what would, months ago, have seemed an impossible excitement.

The strange thing is that the feeling of obligation to visit Anthony for his sake, has been subsumed under a desire to visit him for my sake. The contentment of these long afternoons together, punctuated here and there by volunteer work, is something I never expected to happen. Okay, so boredom, apathy and fatigue are definitely risk factors here but I’m learning how to counteract the former two by coming up with new ideas whenever something begins to become tedious (like watching episodes of Neighbours!) The latter – fatigue – has been solved by this sudden flu which means I’ve been lolling on my bed for three days reading novels and resting, not allowed to go to the nursing home in case I’m contagious. So Ming and my mother have been visiting Anthony – wonderful creatures they are!

But I miss him so much! I have become so accustomed to these afternoons, this routine – the joy of his smile at the sight of freshly picked camellias (and me), playing the card game “Memory” with him and other residents, eating olives and blue cheese with him, or giving him a piece of my latest cake, helping him with his lunch and sometimes dinner too, watching television or a dvd, combing his hair with the metal comb he always loved that I only just found (and he is thrilled!) And so on. Tiny morsels of pleasure, once overlooked, now savored, now treasured. I have never looked at a camellia the way I do now – never! I have never noticed so acutely the beauty of a white peacock feather nestled in the arms of an avocado tree’s blossoms, a tree that is still providing us with plenty of fruit!

I don’t want to sound soppy and sentimental and goopy, but I do think Anthony and I have been extraordinarily fortunate to have found such a mighty love and I sometimes wonder whether this is why we are both now coping so well with what IS. Actually no, it’s not coping, accepting, persevering, or any other stolid adjective. Instead, a wonderfully weird happiness.

Resilience: Anthony has always had this and now it is as if he has gifted it to me.



When three is a crowd

Okay, that whole three is a crowd thing is not always the case, but, when it comes to Ming, Ants and me together now,

There are lots of reasons for this, of course, where generational differences are made stark and raw and plain:

Ming: Mum, stop answering for Dad; let him talk!
Me: Why do you have to be so angry with me all the time!
Anthony: Stop it, you two.
Ming: He’s dribbling.
Me: (whispering) Shut up, Ming and stop embarrassing him!
Ming:(shouting) Dad, stick your tongue back in your mouth!
Anthony: (sarcastically sticking his tongue out then into his mouth) That better?

Now, the misery of this kind of three-pronged visit has been alleviated by the fact that Ming now has his own wheels again and can visit Anthony without me (as he did today and will do tomorrow because I have a cold). It is a relief to know that my absence for a couple of days is probably forgotten in the wake of Ming’s enormity of presence in Anthony’s life, mostly hallucinated or remembered but now, once again, real.

There are so many reasons why a now-20-year-old son, adored always by his mother and father, might get a little tired of the adoration at some stage and then, when the father began to get disease after disease, miss the adoration, and maybe feel a bit lost in the mayhem of his parents’ anxiety, his mother’s exhaustion, his father’s demise from workaholic dairy farmer (when Ming was born) to Parkinson’s disease patient in nursing home.

Ming starts his full-time job at the restaurant and said he will visit Ants after he knocks off tomorrow, so I can have a second day in bed, reading my book and getting over my cold.

I guess Ming and Ants have a relationship that works better if I am absent. Amen.



Anthony: I’m in constant pain.

Me: What? Since when? Where is the pain? Oh my God, I’m so sorry, Ants – you never told me this before!

Anthony: Oh, these things (stretching his arms out), and these other instruments (stretching his legs out in a rather swaggery way).

Me: What kind of pain is it?

Anthony: Agony.

Me: Well why the hell didn’t you tell me this before? I’ll ring the doctor! For God’s sake, Ants, I’ve been telling everyone for ages now that the best thing about your situation is that you are not in physical pain, and now you tell me this!

Anthony: Um… (beginning to do his half-smile)….

Me: So you are kidding? Joking?

Anthony: Just stirring you up, Jules

Me: You want pain? I’ll give you pain! (We have an arm wrestle on the side of his armchair and I win.)

He is so tired that his eyes weep; my laughter is raucous and I apologize but he says he loves my cackle; I leave to come home and he says, unsadly, see you tomorrow.

If Anthony were in physical pain, we would not be able to cope the way we are coping now.

And if Anthony didn’t have his mischievous sense of humor, everything would be horrible. Okay, so everything isn’t wonderful but it is definitely not horrible with Ants in the picture.

(I have learned how to make chili hot chocolate, which Anthony loves, so I might put an extra chili into the mix tomorrow – ha!)


Early to bed, early to rise!

Obviously it is much easier to get up early in the spring than it is in the winter so today I was able to get a lot more jobs done (just the usual domestic duties of washing and folding and tidying and cleaning that overwhelmed me a bit a couple of months ago) before going into the nursing home.

Today I arrived at 11am and found Anthony sitting outside in the sun. I managed to get him into a wheelchair and we went for a walk down to the beach. I tried this the other day but it was too windy and he feels the cold terribly, so we turned back prematurely. Today we went a bit further so, halfway back (which is uphill), I had to stop and take a rest.

Ants: Do you want me to take over?
Me: And how, exactly, will that work?
Ants: I can help you push me.

Yeah, right – grrr!

Sometimes Anthony sort of disembodies himself and will kiss his own hand, thinking it’s mine, or else turn to the left to speak to me, when I am sitting on the right. His room has a view of a lovely lawn and garden and he will often point out, proudly, that Ming is doing a great job with the calves.

I find it fascinating, and admirable of course, that Anthony keeps wanting to climb out of his illness, and incapacity, in order to help. Once we’d returned to his room from our walk today – him shivering with cold and me drenched in perspiration – one of the nurses came in to give Anthony a pill and had a bit of a rant about the staff she was working with.

Nurse: They’re so useless!
Anthony: We can help you (trying to get up).

Now that I am a volunteer, I have a bit more insight into ‘how it is’ for both residents and staff. Anthony is in the ‘high care’ section for people with mobility problems. In the ‘dementia’ section, where I help out with various activities on the weekends, most of the ten female residents are extremely mobile (we go for walks around the grounds!) but terribly confused. I have taken a liking to all of the women but especially Beatrice who is, at nearly 90, physically fit, beautifully groomed and who carries her handbag with her always. Before I volunteered, I would exchange greetings with these women and the carers and Beatrice seemed the happiest. But now that I know her better, I realize that her bright smile is due to the fact that soon her husband will be picking her up and she is always ready and, unfortunately, always extremely anxious. Her husband must have died years ago.

I am, of course, drawn, emotionally, to this nursing home where Anthony is, but I have also become involved in other residents’ lives, so much so that we have become friends. Even with dementia, where you have to introduce yourself over and over again, the friendship-feeling is solid and ongoing.

I’m extremely grateful to be able to do this volunteering at Anthony’s nursing home because it allows me to come and go from his room as if I were just going to hang out the washing, or cook tea, or make coffee – again, a simulation of sorts.

It is now six weeks since I began volunteering and a further six weeks (I think – will have to check) since bring Ants home. If, indeed, it has been this long since I brought Anthony home, then hopefully he will no longer pine for home and beg to come home – a situation that forces me to become stern and admit to him that I can no longer lift/manage him at home. His response is usually dignified but occasionally he accuses me of being unfair.

For the last couple of days I have been feeling a bit exhausted (not because of Anthony!) and I hate this feeling so maybe getting up earlier is the answer to that – yes! I have to tomorrow anyway so I can meet Dr Nathalie Collins (see previous post) for breakfast!

All of those years that Anthony got up before 5am to milk the cows, like so many dairy farmers still do – my hat is off to them – heroes in so many ways!

As for me, 6am is okay – zzzzzzzzzzzzzzz!



My fantastic friend, Dr Nathalie Collins, at her graduation the other day!


Ever since I met Nathalie, she has been either a breath of fresh air, or a ferocious wind. She talks a lot but she also listens. She can transform anything to anything with her wit and wisdom.

Dr Nathalie Collins is an incredibly skilled philosopher, so watch this space!

Congratulations, Nat!!!


Our white-haired boy’s new role

As many of you know, Ming had his second spinal surgery just before Christmas last year at which time he was advised by the surgeon not to resume his job as a dairy hand for our neighbours, or to do any manual job, ever. That was a hard pill to swallow but he swallowed it and, since recovering from the surgery, he has spent the last few months throwing himself into acting auditions (most of which have required him to travel the 200 kms to Perth by train or bus, and vice versa).

He scored many bit-parts: a music video, a ‘student’ in a university advertisement, a couple of paid roles; he has also created a portfolio and is now listed on a website for aspiring actors. In fact, Ming has done so much acting-related stuff in the last few months that I have had trouble keeping up. With no vehicle, and no driving licence, he learned how to use public transport, stay in youth hostels, but he also relied on friends and family for accommodation and transport. It has all been enormous fun and a huge learning curve in so many ways and Ming has become a better net-worker than I have ever been and Anthony’s gregariousness shines out of him.

None of this, however, has proved to be lucrative yet, so Ming started to apply for jobs at restaurants and yesterday he was told that the restaurant, where he has only done a few casual shifts, want him full-time now. I am so elated for him and proud! But he and I are also grateful for the fact that a relative of a friend of one of the owners of this restaurant put in a good word for him. (I haven’t included names here, in order protect the innocent, just in case Ming drops a tray or something haha!)

Today, Ming was working there, so a friend and I went for lunch and it was so weird to watch him in action. The place was very busy and apparently, once he goes full-time, he will be jack-of-all-trades. It was great to watch the way he interacted with customers – he is a natural!

Tonight, he’s gone up to Perth (for the last time for awhile, due to getting full-time work) to play the part of a character in his friend’s university film assignment. He auditioned and got the part last week and here is the irony: he was picked as the character of a son who struggles with his father’s dementia, despite nobody in the film crew knowing his background. I am still a bit gobsmacked.

Anyway, of course I am rejoicing at all of this good news for the white-haired boy (despite no longer being a natural blonde); he will no longer go slightly insane in the nursing home and resort to playing on Anthony’s walker!
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So happy and proud of Ming!


Simulating home

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As you can see we are still experiencing a wintry spring after its false start last week. The weather alerts for Western Australia are a bit alarming with winds of up to 100 kph so I came home a bit early from the nursing home yesterday.

I have begun to arrive at the nursing home by 11am most days now because, with the volunteering, I need plenty of time to wear both ‘hats’. It is working out so well but more about that in another post.

Over the two and a half years since Anthony entered the nursing home, his room has become as close as I can get it to our real home: freshly picked flowers (although I never did this when Anthony lived at home – he did!); daily food treats on plates and a cutting board I keep there; familiar shows on television via the DVD; a well-stocked bar and our own glassware and so on.

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And (my latest idea!) Ming’s 2.5 kg weights. I didn’t expect Anthony to be quite so enthusiastic about this but I was wrong – he did around 20 for each arm with me cheering him on and cracking up laughing at the same time!


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Despite my intention to take Jack, our Irish terrier, in to see Ants, I couldn’t find either his leash or collar that day so I will probably take Blaze instead for the time being.

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Even I am beginning to feel more at home at the nursing home than I am at home, which is really weird! Well, at the moment, it is a lot warmer there.



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