jmgoyder

wings and things

Gutsy 9 – my fantastic bird-in-hand

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 ….

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

G9!

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Opposites

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]

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“Is that you?”

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?”

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YES

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.

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Resilience

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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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,
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.

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Mischief

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!)

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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!

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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!

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Blogging update

I’m gradually (and unguiltily!) getting back to reading, and commenting on, other people’s blogs, and re-subscribing to those I have lost touch with. Like many other bloggers, I feel such gratitude for the community of friends I’ve connected with over the last three years. The fact that I can’t consistently keep up with everyone’s posts no longer bothers me and it is quite a relief to dip in and read when I can, comment if I want to, and not read any blogs if the day is too busy. Having said that, I am very appreciative of those friends who continue to give me their support and friendship. It has been an extremely difficult year for my family, but things are finally returning to normal, whatever that is.

Perhaps my blog-reading will, from now on, resemble the unpredictability of Ming hanging out the washing!

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The expression on Ming’s face here is exactly the same as when he sees his name in one of my blog posts – ha!

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