jmgoyder

wings and things

Sep 28

Gutsy 9 – my fantastic bird-in-hand

by jmgoyder

For those who don’t know, G9 is a peachick who, for some reason (maybe because she was half blue/half white) was abandoned by whoever hatched her. I caught her as she was scuttling, terrified, into the old dairy and pretty much raised her with the hands of Ants and Ming.

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Today, I decided that I would come home earlier than usual from the nursing home. I told Ants I had to go and feed the birds and dogs, and then said I would see him later.

Ants: You won’t come back.
Me: What do you mean? I always come back!
Ants: Not, yes, what car?
Me: Our car, silly!
Ants: How many calves? I need those people for the fireplace
Me: Only ten left to feed. Ming will do it. I know who you mean for the fireplace.
Ants: Are you sure?
Me: Yes, should we ring tomorrow?
Ants: You do it – something is wrong with me.

When I got home, I went straight out to find Gutsy and, as usual, she was waiting for me:

I’d like a word, Julie

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You’re always out and about and I feel ….

IMG_3809
Oh I think I’m going to cry – how embarrassing!

G9!

Animal Australia Birds blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia Wings

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Sep 27

One-liners

by jmgoyder

Today, the nurse-in-charge told me that they were concerned early this morning because Anthony couldn’t formulate words and I said that I had noticed this too over the last week or so. Of course this loss of grip on language has been happening for some time and sometimes Anthony tries, fails and sighs in frustration and resignation. His incoherence now, however, is so impossible for me to interpret, that I have become very good at pretending to understand.

But then all of a sudden, he will come out with the most perfectly sarcastic one-liner that it cracks me up. This happened last week when the nursing home had the accreditation people in. Ants and I were interviewed by a lady who directed her questions at Anthony but, because he was a bit confused, I had to kind of interpret his answers, then double-check for his nod.

After the interview was over and Ants and I were alone again, he grimaced arrogantly, and said, clearly and coherently, “I think I was a little too enthusiastic, Jules”. Well, of course I cracked up laughing straight away but Ants just gave me an ironic look and punched his right fist into his left hand and began to smile his slow smile.

Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Sep 25

Opposites

by jmgoyder

Today I spoke to a fairly new resident in Anthony’s nursing home, Meri. She is in a motorized wheelchair with stroke-like symptoms, but is totally lucid. On her first day, I could see a mixture of grief and determination in her expression when I just said hello. Today she told me that she is adapting but her husband keeps ringing her and telling her that he feels lonely and abandoned.

I couldn’t quite compute this until I realized that it must have been Meri’s decision to go into the nursing home in order to save her husband from the burden of care. I told her that for the first year of our own nursing home experience, Anthony and I had a continuous dialogue, sometimes painful, sometimes gentle, until we both accepted the situation.

Meri and I are going to be good friends, I hope. We have a lot in common in opposite ways.

[PS. all names are always altered for privacy]

Friendship Grief Marriage Parkinson's disease Parkinson's disease dementia

13 Comments »
Sep 24

Closure

by jmgoyder

Yes, I realize that the notion of closure is a tricky one but for me it happened when I wrote, published, then subsequently deleted, a post about the car accident, a few days ago. For the very last time.

The self-pitying self-indulgence of that post sickened and embarrassed me for a couple of reasons. Firstly, that I would mourn what-might-have-been (death, disability) when it soon became apparent that everyone would be okay. Secondly, that I know people now who have lost their children to death, so why the hell am I complaining?

Instead of rejoicing, I kept picking at the scabs of my confusion, family wrangles, guilt and blame, dead-end conversations with Ming.

It is now an incredible relief to be able to say that the accident is over and done with. Of course, I can only speak for myself, but, no matter how selfish this sounds, I am over it!

The best thing about closure is the anticipation of the next chapter….

blogging Family Friendship

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Sep 23

“Is that you?”

by jmgoyder

Today, when I arrived at the nursing home just before lunch, it was a bit like the five seconds of yesterday but this time Anthony said, “Is that you?” as if he couldn’t quite believe his eyes. I think we have now fallen into a new phase of Parkinson’s but then again Ants might just be having a bad week.

I am still surprised at how gleefully I go in every day and I’ve been trying to disentangle the complexities of why this is because it’s only a relatively recent phenomenon and I’m not quite sure what flicked the switch from the dutiful dread of a few months ago to the anticipation of now. The sense of purpose, routine, satisfaction and joy I feel now is wonderful but also a bit disconcerting!

The volunteering situation has been absolute magic. Today, Nat, Edna, Beatrice, Ants and I sat around the dining room tables after lunch was over and played Nat’s version of ‘Memory’. Edna is just in for respite – her first time – and she told us yesterday (during a similar game) that she had been extremely nervous but since meeting Nat, relaxed a bit and now they are like old friends!

So we played and here are some smatters of conversation during that hour and a half of laughter.

Nat: Tonyyyyyyy (speaking to Ants) Come on, darling, turn your cards over.
Edna: Don’t let her boss you around, Tony.
LAUGHTER
Me: Ants, turn two cards over and hope for a match.
Ants: Jules?
Me: Pick up two cards – here I’ll help you.
Nat: My turn.
Me: No it’s not, it’s my turn!
LAUGHTER
Nat: Cheeky bugger.
Me: I heard that, Nat!
LAUGHTER
Edna: Is she cheating again?
Me: Well, even though she is a really beautiful person, I did see her put a card on her lap.
Nat: I never did!
Me: (sneaking around the table to snatch the card) AHA!
HYSTERICAL LAUGHTER FROM NAT AND EDNA AND ME – ANTHONY BEMUSED
Nat: Tonyyyyyy, help me!

I can’t count how many times I’ve played Nat’s version of ‘Memory’ now, but it has become quite popular with other residents too. The best thing about it is Nat’s contagious laugh and her mischief; the best/worst part is Nat wanting Ants to join in, and the worst part is Ants unable to engage very well. Plus, Nat and Edna are nearly blind so this makes for a very sloooooow game and Nat alternates from saying “This is the most fun I’ve ever had in meee life!” to “This is the longest game I’ve ever played!”

Today, we were all exhausted, especially Anthony who often chooses not to join in or else is so peacefully asleep in his armchair that I don’t rouse him. I just leave my stuff (scarf, handbag, book) next to him so that when he wakes up he’ll know I’m still around and not gone.

I help Ants with his tea now because this is a busy time for the staff and why not? He is pretty exhausted and PDish by then so I say my ‘seeyalater’ and am usually home by 6pm.

Tonight, as I left, I kissed Anthony on the forehead and he tried to speak but even the single syllable he uttered was impossible to interpret. He could no more say “I love you” than “Is that you?”

Family Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Sep 22

Five seconds

by jmgoyder

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….)

Ants!
It’s me – Jules!
Ants!

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!

Animal Birds Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia Wings

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Sep 21

YES

by jmgoyder

YES?

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.

YES.

Australia Birds blogging Embarrassing moments Family Friendship Grief

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Sep 20

I am so fortunate

by jmgoyder

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.

Animal Australia Birds blogging

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Sep 18

Resilience

by jmgoyder

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.

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Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Sep 16

When three is a crowd

by jmgoyder

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

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.

Family Grief Happiness joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers

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