jmgoyder

wings and things

The magic of make-believe

One of the most wonderful aspects of being a small child is the magic of ‘make-believe’ – the power of the young imagination to create anything out of anything and to see the world through the lens of magic.

The first time I climbed high up into a tree as a child, the first time Ming saw fog (he was 4), were moments of intense magic – make-believe moments

Anthony is 23 years older than I am so I have no way of knowing what his childhood make-believe moments were. But, as his Parkinson’s disease dementia progresses, I am becoming more amenable to his visual, auditory and tactile hallucinations. For example, he often sees dogs or calves in his nursing home room and wants me to shoo them into another ‘paddock’; and, yesterday, he asked me who the small boy was, in the corner of the room. This small boy often features in our faltering conversations.

Anthony: Just over there.
Me: Is it Ming?
Anthony: No, of course it isn’t Ming!
Me: So who is it?
Anthony: I don’t know.
Me: So do you like this kid?
Anthony: I think so.
Me: Okay.

I came home last night in a bit of a quandary. Do I tell Ants he is hallucinating and there isn’t a kid in his room? Why is this hallucinated little boy such a constant presence in Anthony’s room? Who is this little boy, if it isn’t Ming?

Maybe the older Anthony has make-believed himself into his childhood self? I don’t know if this is magic or tragic, but I am trying very hard to figure it out and go with the flow etc.

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Anthony’s sense of humour

Yesterday my first-born nephew (I have six nephews on my side of the family), and his beautiful fiancĂ©, visited us in the nursing home. Jared has always had a soft spot for Anthony and vice versa. I didn’t tell Ants they were coming because I wanted it to be a surprise. It’s awhile since they’ve seen each other because Jared lives several hundred kilometres away, and Ants hadn’t met Carly yet. I was very excited, and a little bit nervous, about the visit.

When the young couple entered the room, I was in the middle of feeding Ants his tea; I jumped up and said, “Ants, Ants, it’s Jared; Jared’s here!”

Without the slightest hesitation, Anthony looked up at Jared and mumbled, “Well, I didn’t think it was Jesus Christ.” We all cracked up laughing, as I introduced Ants to Carly.

Anthony’s sense of humour, sometimes expressed in sentences that come out of a void of silence, always flabbergasts me. It can be a bit of a struggle for me to get Ants to talk, to smile, to even look at me. And yet, with a single remark he can have me laughing my head off!

Thanks, Jared and Carly; you two will now become a topic of conversation in the future. I will remind Anthony of his funny remark about Jared not being Jesus Christ, and, in my more contemplative moments, I will, perhaps, wonder if he was.

Anyway, back to Anthony’s sense of humour: I lightly kicked his shin as we were leaving and he said, with mock ferocity, “There’s no need for that!”

[Note to blogger friends: After my modem died and was replaced, my computer then died but has now been replaced, so I am very behind with reading other blogs and Fbook posts. In other words, I have fallen in love with the word ‘delete’ because there is too much to catch up on!]

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Sustenance

Anthony used to be a big eater. I remember one Christmas lunch at his brother’s house across the road where, as a bit of a joke, Anthony’s plate was piled impossibly high with food.

We all watched in awe as he consumed the lot. Afterwards, I had to take him back home to lie down and I remember being astonished at the size of his tummy; he looked like a pregnant woman. I also remember being a bit alarmed by his groans but unable to suppress my fits of laughter as I mopped his brow.

I don’t know if other members of his brother’s family remember this because it was probably about 30 years ago, but it is one of my funniest memories. Sometimes, now, when I am helping him with his lunch, I remind him and sometimes he remembers too.

Except for that day, Ants was never fat; robust and well-built, he was rather vain about his weight. He still is! Over the many years since being diagnosed with Parkinson’s disease and prostate cancer he has lost over 20 kilos and I am rather jealous of his flat tummy. When I admit this, he proudly pats his, and then prods mine in a way that can only be construed as critical.

Anyway, he still loves his food. The main meal of the day at the nursing home is always wonderful; roasts feature regularly and Ants gobbles these up. The only trouble now is that he often needs help, which is why I try to be there by noon, or else get my mother to be there for me.

Dina (my decluttering friend) was there the other day and noticed that Anthony tended to poke at his meal, spilling some of it onto the tray. On another day, my mother told me that he didn’t touch the fish because it was white, the sauce was white, and the plate was white, so he just didn’t see it. On both occasions, he was helped of course.

As for me, I usually resort to feeding him. Yes, I get it about independence and all that but Anthony seems to have forgotten how to use cutlery and often doesn’t remember how to drink from a cup or glass, and the feeder cups seem to mystify him. Obviously, if none of us are there, staff will come to the rescue so that is very reassuring. His food is always cut up for him which is good but the fact that he seems to have forgotten how to negotiate fork-to-food-to-mouth is a bit alarming.

Our conversation the other day may, or may not, shed light on this newish problem. It was noon and a carer brought his lunch in and placed it on his tray.

Once I had unwrapped the meal from its foil and put the bib on Ants, I began to use a spoon to gather the first mouthful. As always, Ants asked me to eat some too; he wanted to share it. And then, looking at the plate of food, he began a rather bizarre conversation:

Anthony: Am I in there?
Me: Are you in where?
Anthony: In there [pointing to the meal]
Me: Do you want to be in there?
Anthony: Yes.
Me: Okay, let me check; yes, you are in there.
Anthony: Good.
Me: So are you okay to eat it now?
Anthony: Yes.
Me: So I am putting you back into you?
Anthony: Whatever you say.

It’s times like these that I remember the Anthony whose appetite for life enthralled me.

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A very special afternoon

Yesterday, Anthony’s best friend of over 50 years, Baz, and his beautiful wife, Julie, visited us at the nursing home. It had been awhile since the ‘boys’ had seen each other because I can no longer physically manage outings with Anthony due to his decreased mobility. But Ants has been mentioning Baz lately so I thought I’d just invite this lovely couple as a surprise for Ants.

I got to the nursing home at noon and helped Ants with his lunch. He was a bit blah and not very responsive but, bingo, when Baz and Julie entered the room, his face lit up!

Julie was the one who took yesterday’s photo of Ants and me. She also took this one which I am going to show Anthony today.

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Isn’t it a beauty! And here is the beautiful photographer herself.

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She and I caught up as Ants and Baz reminisced. At one point, completely out of context in terms of what Baz was saying, Ants looked at him and said, “I love you and you love me.”

Thank you, Baz and Julie!

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Today

I’ll write more about today tomorrow but, in the meantime, I am savouring today.

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Today.

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Another day with Anthony

After the fright of the other day when Ants was unconscious for so many hours (much longer than usual), I now realise that my being there every day is important. (Confession: I have been taking ‘days off’ here and there recently).

The first interesting thing about this is that, according to staff, relatives, and visitors, if I am not there, Anthony asks for me and is sometimes fretful.

The second interesting thing about this is the whole time warp thing: i.e. I rush in to see Ants on my way to getting the car serviced, seeing whether we have won lotto, buying chick starter etc. so it’s a very brief visit. And he always knows that I will be back soon, even when I don’t come back that day/night. Five minutes can equate to-and-fro with five hours – or vice versa.

The third interesting thing about this is Anthony’s daily mention of Ming. He never does this in a needy way; he is just always very curious and loves seeing photos of Ming, including Ming’s latest Halloween antics/costume at the restaurant where he works. These photos (as well as the photos of Ming on the walls of Anthony’s nursing home room) are always a buzz – “There he is!” Anthony will sometimes say.

When I told Ming about the frightening day, I cried because I was scared that we might lose Anthony suddenly (which, of course, we will). In telling Ming about my day with Anthony, I realised, and saw, how alike they are: generous, sensitive, gregarious, easy-going, beautiful.

Another day with Anthony…
… enhanced by the fact of Ming.

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Turning corners

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

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Yes, that is Ming on the left in the above photo. I was feeling a bit blah yesterday morning but, when I switched on my newly-switched-on computer, and the internet rushed into my laptop, this photo was the first I saw.

Okay so it took me a few seconds to realise that it was Ming! Other photos followed and I was so overtaken by laughter that the whole blah thing disappeared. I got showered and dressed and drove into town for lunch with this beautiful nurse.

Once I figure out how to save the photos I took of Ming in his nurse’s outfit, as he and I lunched together during his break, I will post them. It was the most glorious hour of halloween hilarity.

And then I went to the nursing home to see Anthony. I arrived at 1pm and left at about 4.30pm. For these hours I was unable to wake him up no matter how much I shook his shoulders, squeezed his hands, shouted (as quietly as I could) ‘Wake up, Ants!’ His nephew visited, a friend visited, the nurse-in-charge came in and checked his blood pressure etc. and reassured me that all was well. I visited the dementia wing a couple of times, showed several staff and residents the photos of Ming, laughed and joked, in the hope that when I returned to Anthony’s room he would be awake. He wasn’t.

The possibility that Anthony might die during – or soon after – one of these TIAs (which seem to be occurring more often), is a corner I have been hesitant to turn into. I was calm yesterday afternoon, then terrified, then resigned. When I got home, Ming was here, and listened to my tearful fears in the same way I listen to his; after all, we both love Anthony.

It is entirely possible that Anthony will live for many more years; it is equally possible that he will die soon. I am not ready for the latter, despite many attempts to BE ready, and I cannot imagine my life without Anthony in it. His room in the nursing home, the staff who have become such wonderful friends, my arm around his shoulder, our long afternoons watching television, bantering, just being together, sometimes reminiscing, sometimes eating and drinking, laughing, looking at photos, doing paperwork, engaging with staff, residents, friends, relatives, visitors … his room has become my refuge, my home.

Ah, but I do have another home – a place where I can eat, drink, write, relax. I can be one of those trendy people who drink short blacks whilst writing articles about the meaning of life and death OR the proud mother of the waiter at Corners on King.

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

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“Handsome man!”

One of the staff at the nursing home always makes a point of greeting Anthony with “Handsome man!” Her wide, glorious smile almost always elicits his own smile and today that was the case.

The simplicity and constancy of this gesture is extremely comforting for me too, because I know she, and so many other staff, care about him. Genuinely.

A recent conversation:

Anthony: They love you. They always ask for you – they say, ‘Where is Julie? Where is your wife?’

Me: No, it’s you they love, not me, silly!

Anthony: No, it’s you! They always want a Julie in the room.

This afternoon, Anthony was extremely lucid until around 4.30pm when he kept ‘seeing’ me on his right hand side, when I was on the left, and vice versa.

Anthony: Where is Julie?

Me: You mean me?

Anthony: Oh there you are!

And that was when she came back – this beautiful staff member – and said those magic words:

Handsome man!

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Full of beans!

A long lost dream is coming true via a tall man with red hair, named Dan, whose business is called Full of Beans. Thanks to him, my vegetable garden is being created! If it weren’t for being invited to join the gardening group I would never have known about him, so I am very grateful. Ironically, I can’t attend tomorrow’s get-together because Dan is coming back to do the planting and I want to learn.

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One of the things that really appeals to me about Full of Beans is that it provides an ongoing maintenance service for gardening novices like me.

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Okay, so gardening friends far and wide may see this as a kind of cheating on my part (employing someone to make me a vegetable garden) but oh well. I am already crazy about what Dan has begun to create and can hardly contain my excitement.

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Anthony was an avid gardener, despite not having much time, with milking the cows and looking after his mother. Nevertheless almost everything he planted, over 50 years ago, still survives. But he was never the least bit interested in growing vegetables. A couple of years into our marriage, I asked for a vegetable garden but he said there was no room. I argued that there was plenty of room (5 acres around the house!) to no avail.

And, as Ming grew up into an adolescent, he formed the same opinion. It was just a small dream of mine but neither of them would have a bar of it. That’s okay; they just weren’t interested and maybe didn’t realise how much I wanted the vegetable garden. I couldn’t do it by myself so one year my brother came out and dug me a patch and every single gigantic zucchini gave me a thrill. But that went by the wayside in the face of Anthony’s mysterious deterioration in health (we didn’t know about his Parkinson’s then) and the fact that I was working full-time that year.

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Now that Anthony is no longer cognisant of our shared reality; now that Ming is in a fantastic relationship; now that I am learning how to be completely alone, a vegetable garden seems profound.

A long lost dream is coming true via a tall man with red hair, named Dan, whose business is called Full of Beans.

http://www.fullofbeans.com.au

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Swings and roundabouts 2

The two photos I put up in yesterday’s post had absolutely nothing to do with what I wrote and I only added them because, having been on the phone for nearly two hours, trying to get the internet back from its little holiday, I could! So here is my attempt to interpret what those two photos (and a few others) actually mean.

CAST OF CHARACTERS:

Prince – white peacock
Martha and Mary – the two white chooks
Whoopie – the new chook with the fancy hairdo

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Prince: What the hell?
Mary to Martha: Quick! Hide! There’s a huge creature on the other side of the fence!

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Martha to Mary: I think it’s okay. He just did this little purry thing in his throat. Anyway, we’re safe in this yard.
Mary: A purry thing! Martha, do you not realise that he is probably flirting with us?
Martha: Yeah, but you have to admit he is kind of cute.
Mary: Cut your beak off, Martha!

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Prince: I’m not sure whether these strange, short, ugly things are my cup of tea after all.
Mary: See, Martha, not only does he talk to himself, he’s insulting. Ignore him!

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Prince: Okay, so I’m not that good at introductions, but to be rejected so soon by these two whatever-they-ares is very disturbing.

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Prince: Indifference hurts.

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Whoopie: Is the coast clear yet?

Note 1: Whoopie was given to me by a friend who breeds beautiful poultry – thanks so much, Jane!

Note 2: When I first began writing this blog, Anthony was still at home, but ailing. We started to accumulate guinnea fowl and chooks because Ants remembered having these as a young boy/teenager and I wanted to cheer us all up. But then I got a teensy bit carried away with the whole bird thing (as past blog posts reveal ha!) It’s good, now, to begin again with just a few chooks…. even though this bewilders the peacocks!

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