Embarrassing moments | jmgoyder

Swings and roundabouts 3

by jmgoyder

We had a couple of family gatherings on the weekend. On Saturday it was my first great niece’s birthday party. Neve, my oldest brother’s first grandchild, is already, at 2, very stylish, so I bought her a multi-coloured tutu which her mother says she loves. The finding of this tutu was somewhat serendipitous because on the day before the party, my friend (E. from the nursing home, who I wrote about a few posts back), had set up a stall of her crafts, including tutus! And, just before she packed up I found the perfect one for Neve. I am kicking myself for forgetting to take a photo of that tutu – oh well.

Then, on Sunday, we had another family gathering at the home of another crafty person – my mother. One of the purposes of this pizza + cheesecake lunch was for family members from down south, and in-laws from Scotland, to get their first glimpse of my first great nephew, Spencer. And it was a great glimpse as you can see in this photo of my youngest brother with his first great nephew.

Like E. (oh to hell with anonymity – her real name is Ellen) my mother, Meg, is talented in the art of craft, her own speciality being hairpin lace. Here is a picture of Spencer in his Meg-made baby shawl.

And the above scanned picture is a newspaper article from a few years ago that featured my mother’s hairpin lace baby shawls! I thought she was going to get famous (I was going to be her rich agent!) but I guess baby shawls are not in the category of investment, especially if they are burped upon.

There are two more babies-on-the-way in my family now so my mother will be busy with hairpin lace once again. In the last 12 months around eight of the nursing staff have had babies and we gave them all a shawl; I paid for the wool and my mother did the craft.

Okay, I need to bring this to a coherent conclusion but I can’t be bothered with coherent. Prince is still trying to impress the indifferent chooks to no avail….

The last time Anthony came to a family occasion was about two years ago and it was a horrible experience – the wheelchair taxi, my family’s empathy, my tears on his departure. When I look back, I am in awe of how we tried always to include Ants in every family gathering … until it just became impossible.

Martha: She’s forgotten to get the laying pellets again.
Mary: What? I’m starving!
Prince: Will you two just shut up!

Happy birthday, Neve!
Happy arrival, Spencer!

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Swings and roundabouts 2

by jmgoyder

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

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

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!

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!

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.

Prince: Indifference hurts.

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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Swings and roundabouts

by jmgoyder

Yesterday I said, rather blithely, “I refuse to be sad” (about Anthony’s Parkinson’s disease etc.). This morning I realised why it’s possible for me to say this.

Anthony isn’t sad!

It’s as simple as that. Okay, so saddish moments come and go, and the first year of him being in the nursing home was a hell of mutual sorrow. But, in retrospect, it was me shedding most of the tears, not Anthony. In fact often, when I left to come home, he would comfort me.

But it’s now that matters and in-the-now neither of us is sad, which is a bit of a miracle really. The weird irony is that I would not be able to cope with Anthony’s illnesses if it weren’t for his own emotional resilience. I’m not very good at emotional resilience, but Ants is.

People often think that the person in the nursing home is the vulnerable one and that he or she is the one in need of comfort. But sometimes it’s the other way around; it’s the visiting spouse or daughter, or grandson, or friend, who is in need of comfort.

Anthony comforts me!

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Sep 30

‘Who’s that silly old fool?’
by jmgoyder

I showed Anthony these photos just after I took them with my phone the other day. They’re a bit blurry and way too close-uppish but I wanted to show him what he looks like sometimes.

The first photo shows his usual facial expression. This is often termed the ‘Parkinson’s mask’ and is due to the fact that the facial muscles aren’t working very well.

Anthony: Who’s that silly old fool?
Me: It’s you!
Anthony: Ghastly.

So then I tried to make Anthony look me in the eyes by shouting “Look me in the eyes or I’ll bop you!” Ants and I have discovered that this rather dramatic method works well.

Anthony’s smile, trapped for so long inside that Parkinsonism mask, has, as I’ve said before, begun to occur more and more.

Ming disagrees with me because he says that whenever he enters Anthony’s room, he is greeted with that smile. What he doesn’t realise is that his visits are excitingly unexpectedly haphazard, whereas mine are (perhaps) boringly regular.

When I showed Ants that last photo of his smile, he took my hand in his and kissed it exactly ten times before saying…

Anthony: Who’s that silly old fool?

Me: My hero.

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Sep 28

Dilemma
by jmgoyder

Last week I received the following email:

Dear Julie,
I am writing with regard to your book titled We’ll be Married in Fremantle. Given increasing warehouse costs, we have had to review the amount of stock that we are holding for a number of titles where sale numbers each year are low. Unfortunately this book is among those selected to be removed from stock. We would, however, like to offer you the opportunity to purchase as many of these copies as you choose at a price which will cover our costs of shipping and handling….
CEO of … Press

Initially I felt humiliated, then I realised that it is now a rather ‘old’ book, having been published in 2001. I also comforted myself by realising that most of the 5,000 books had sold and I could rescue the 300 or so remainders from being pulped at very little cost. I am still deciding what to do.

It’s not that I have any intention of on-selling the books; I certainly don’t want to have 300 or so copies of my own book on my bookcase to remind me that it wasn’t a bestseller; and this dilemma has nothing to do with ego.

During the time of writing my PhD, then re-writing it into a book (several years altogether), I remember being absolutely driven. I wanted passionately to write something that would change attitudes to people suffering from Alzheimer’s disease. And my thesis/argument was so simple: listen, and respond to, the stories, even when they don’t make sense.

So I have a few creative ideas of what to do with those 300 or so copies IF I decide to rescue them from obsolescence.

Prince and Princess don’t have to worry about these kinds of things – oh to be a bird!

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Sep 20

Jigsawing
by jmgoyder

Blogs can be like those really difficult jigsaws that it might take you years to complete but, at the end, you can’t quite complete because of all the missing pieces. You know exactly what those missing pieces look like, and how they are shaped, but you have to accept that they have probably been gobbled up by the vacuum cleaner, then used to make a bird’s nest; they’re gone but not gone.

Some time ago, I paid a small amount to have my blog converted to book-like format so that I could print it out. The reason I did this was not so that I could admire my clumsy, incoherent handiwork, but so that I could re-shape it into some sort of coherent story about Parkinson’s disease.

Okay, so the PDF conversion meant that it would print from 2011 to now rather than backwards-in-time. Because each year consisted of hundreds of pages, I ended up with seven PDF files and happily printed out one and a half of these files until my printer
spat
the
dummy!

Well, after weeks of wrestling with/ coaxing/ swearing at /wanting to OBLITERATE/ and finally giving up on, my uncooperative printer, I came to my senses and put all of the files onto a usb and took it into a print shop. Half an hour later
hey
presto!

Now, hopefully, within nearly 3,000 pages of blog words and images – a jigsaw of thoughts and emotions spanning nearly four years – I will find something that is worth editing into a useful and publishable book.

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Sep 18

Leaps and bounds!
by jmgoyder

Gardening: I have planted vegetables in one of the beds that Jake (my lawn and gardener friend) has created for me. I have no idea whether these lettuce, cucumber, corn, parsley and tomato seedlings will grow up but here’s hoping. I’m a bit too nervous to ring Jake and ask if I have planted these things in the right places – i.e. should they be in the grave-like mounds or in the gullies? Just in case, I did both.

Chooks: Six quite different chickens are gradually getting used to each other with minimal violence. They have a lovely yard so hopefully peace will soon reign.

Lunch: I seem to be going out to lunch a lot lately which is something I only ever did very occasionally before Anthony went into the nursing home. This feeling of freedom is relatively new to me. It was always there of course and Anthony was never one of those dominating, bossy husbands who insisted on the adding cream and more butter and salt to the mashed potatoes. Wait a sec. – yes he did!

WELL, IT’S BETTER THAN NOTHING, YOU GARDENING, CHOOKING, LUNCHING PEOPLE!

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Sep 16

The carer who “loves” dementia!
by jmgoyder

Jodie Desilva works as a carer and supervisor at the nursing home where Anthony lives, her favourite area being the dementia cottage. She has such a gentle manner, and exudes such calm, that whenever I was working with her, I felt a sense of great peace. I noticed, too, that the residents were also affected in very positive ways by her contagious serenity.

On beginning her shift, Jodie will always distribute her latest acquisitions around the cottage: second-hand scarves, hand-bags, mirrors, and all sorts of colourful, miscellaneous objects. In doing so, she transforms the living areas – dining and television rooms, entrances and hallways, into a mosaic of colours, interesting objects, and cosy busyness. The ways she does this – so quickly and yet so unhurriedly (this is probably the definition of ‘efficiency’!) – is testament to her gentleness.

But it was the way Jodie related to the residents with dementia that most struck me. If A. wanted to know where her (deceased) husband was, Jodie would give her a hug and reassure her that he’d be back soon; if B. refused her dinner, Jodie would ask her what she wanted instead (for example, a sandwich); if C. started screaming “get the cops!” Jodie would humour her into a laugh.

It was during one of these laughing moments that Jodie looked at me and said, “I LOVE dementia!” Her compassionate giggle, her hand resting on the shoulder of one of the residents, her total ease in the company of so many people with dementia was/IS moving.

Jodie’s comment about loving dementia makes a hell of a lot of sense to me now. After all, in terms of Anthony’s encroaching Parkinson’s disease dementia, there isn’t much point in me hating it when we have both now accepted it. But to love it? To love dementia? That idea has taken me a bit longer to absorb. It certainly hasn’t been a problem for me to love Anthony of course, but to love his dementia?

Then all of a sudden it strikes me; I have been loving his dementia; I have been making his room more colourful; I have been laughing more with him; I have been coping better; I have been exuding my own sense of peace….

Thank you, Jodie Desilva, for your wisdom and your personal kindness to everyone you meet at the nursing home (and elsewhere I’m sure). I salute you.

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Sep 15

Missing Ming
by jmgoyder

Ming has met a beautiful girl and, as a result, I hardly ever see him, except fleetingly.

Of course I still hear him climb in the front window in the early hours (because I keep forgetting to have a second key cut, but I did remember today!)

And, occasionally we indulge in leisurely conversations during the five seconds he has left to get ready for work.

Me: Good morning, Ming! I shout from my bed.

Ming: Morning, Mum. What do you want? he shouts from the bathroom.

Me: Oh, darling, I don’t want anything! How’d the party go?

Ming: I don’t have time for this morning conversation thing, Mum. Can you just leave me alone so I can get ready for work!

Me: Okay, sorry.

It’s all a bit surreal for me. Of course I haven’t actually lost Ming, and I always knew that one day he would meet someone who would both challenge and embrace his opinions, personality, habits, originality.

The beautiful young woman with whom Ming is involved has a similar ‘old soul’ wisdom to his but is much more academic. Every time I meet her, I am impressed by her integrity, and honesty, and the way she looks at Ming.

So, yes, I miss Ming in the sense that I don’t see him as often as I used to. After all, why would he want to be home with me when he can be out and about?

Nevertheless, I always knew that one day I would be without Anthony here (already happened), and maybe without Ming here (happening).

Hence the birds:

I am so proud of this Ming of mine.

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Sep 14

Keeping a record
by jmgoyder

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.

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