grief | jmgoyder

An argument about Anthony’s smile

by jmgoyder

You know how I’ve been saying how wonderful it is to see Anthony smiling again, and that I’ve been crediting myself with having made a huge effort to get that smile back? Well, Ming disagrees.

Today was a day off work for Ming so he went to see Anthony and I had a day at home. When he got back he told me that he had Anthony laughing!

Ming: Mum, Dad never lost his smile!

Me: You don’t see him as much so you don’t know – anyway you can always make him smile because you’re Ming!

Ming: So can you and so can anybody!

We left it at that; after all there is no point having an argument about a smile. Nevertheless our brief argument got me thinking about Anthony’s Parkinson’s ‘mask’ (the blank, unblinking, slack-jawed expression on his face, typical of PD). And I realised that the only reason I see this more than anyone else does is probably because, when I visit, I am there for hours so I see the fluctuations.

For example, when staff come into Anthony’s room and banter or flirt with him, he smiles; when friends and relatives visit, he smiles; when Ming and I visit, he smiles. So perhaps I should adjust my thinking to the possibility that it has become easier to conjure/coerce that smile? Maybe Anthony’s smile, and even his laugh, was always there, always ready to be there.

Maybe it was my own smile that went missing for so long.

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Ago

by jmgoyder

‘Ago’ is a word I have never thought about until this afternoon. Now, I miss ago.

Lately, I haven’t been able to find the right words to describe Anthony’s condition as it ebbs away. A few days ago, he was so incredibly, cheekily, the Ants from many years ago; the next day he was like someone comatosed; today, as I left, he asked me to get four pieces of steak for tea.

Physically, he and I both cope well. After all, at the moment, Ants has very little physical pain, and me being a young girl (ha!) of 56, driving from farm to town to see him is not a big deal.

One of the many lovely staff at the nursing home sent me this picture of Ants during an animal visit activity. Thank you so much Chloe!

This has inspired me to take Blaze (mini-dachshund) in to see Ants tomorrow again. Blaze (son of Inky 2 and Doc 4) will remind us of once ago.

Long
ago.

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‘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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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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There’s ‘a Julie’ in the mirror.

by jmgoyder

There is something beautiful about the fact that sometimes Anthony will see the same camellias I picked for him days ago as today’s – new and fresh.

The other day, as I was leaving Ants to come home, he spotted my reflection in his wardrobe mirror. (His armchair is in one corner of the room and, if he turns his head to the right, he can see himself in this mirror).

Anthony: There’s a Julie over there.

Me: (turning to face myself in this mirror) Yes, that’s me … actually that’s US in the mirror.

Anthony: Oh, of course.

Me: You idiot!
(Don’t be alarmed; Anthony quite likes a bit of gentle verbal abuse now and then).

Apart from the visual hallucinations (often of cats which is weird because Anthony doesn’t like cats), there is also a certain amount of visual confusion lately. Ants’ view to the left is through a window overlooking a lawned area where he often sees cattle; the newsreaders and/or characters on television are sometimes mistaken for real people to whom Anthony will often respond verbally; his walker can become a lawnmower; the staff going up and down the hallway are ‘kids’ or ‘teachers’ or long-deceased relatives; and the blanket on his knees (lately a source of enormous confusion as the day progresses) is unrecognisable to him as a blanket until ….

Me: Will you stop pushing the blanket off! I thought you were cold, Ants!

Anthony: It’s just … I don’t know what this is, Jules.

Me: It’s a blanket, to keep you warm, so I’m going to put it back on your lap and put your hands under it and, if you move, I will bop you!

Anthony: You’re beautiful when you’re angry.

Me: Argh!

This particular blanket has a tartan pattern and a fringe, and is one of ours from home. Other rugs and blankets (particularly those with patterns of any kind) can really confuse Anthony, but I have only recently realised this. For example, if the pattern is one of flowers, Ants might see these as real flowers and want to touch or rearrange them.

None of these visual hallucinations/misrecognitions currently cause Anthony undue distress, especially when I am with him. On the other hand, I sometimes wonder what he might be ‘seeing’ when I’m not there. When I think about this too much, I get worried, so I mostly try not to think about it for the sake of my own peace of mind. After all he is in good care.

But I just wish I could somehow leave myself in that wardrobe mirror so that whenever Anthony glanced to the right I’d be there….

…. like the camellias.

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A brief moment of panic

by jmgoyder

Yesterday morning I received a phone-call from the nursing home manager to say that Anthony had had a ‘turn’, most probably a TIA (transient ischemic attack or mini-stroke). He has had these before but this time he was unresponsive for ten minutes.

As I rushed into town, I experienced a brief moment of panic even though I knew Ants had recovered from the TIA, because the more of these he has the more likely it is that he will have a serious stroke. On the other hand, he has been having TIAs from well before I knew what they were and twice, when he was still living at home, I had to call the ambulance. And, during his years in the nursing home I suspect he has had more of them than anyone realises because he sleeps a lot anyway.

Four years ago, at the huge 75th Ming and I held for him here, I remember being fairly certain it would be Anthony’s last birthday. His prostate cancer was well advanced and so was the parkinson’s. Daily tasks had become extremely difficult for him and I was exhausted. Perhaps it was this exhaustion that made me more accepting of the fact that he might die soon.

But now that all his care needs are fulfilled by the nursing home and I have the leisure to simply enjoy Anthony’s company, the thought that he might die soon is unbearable. Having outlived his prognoses by several years already, I have become used to the idea that he will continue to live for a long time.

So the thought that he might either die or become even more incapacitated by a stroke is horrifying. I can’t imagine my life without him but maybe I should prepare myself a bit. Who knows?

Anthony’s fortitude amazes me; he is so resilient! When I said to him yesterday, “You had one of those mini-strokes again, Ants”, he retorted, “No I didn’t – I just fainted.”

But for the rest of the day he kept hold of of my hands with both of his until I left to come home with the usual goodbye.

Anthony: Don’t be long, Jules.

Julie: I’ll be back soon, my beautiful man!

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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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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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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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Changing

by jmgoyder

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

I have changed my mind so many times over the last few years, months, weeks, days, minutes, moments, about how to best care for a husband, 79, in a nursing home, and our son, 21, embarking on adulthood. It’s doubtful whether Ming will want chooks in his future life!

Not very long ago, whenever people talked about the weather, or gardening – whether it be small-talk or serious-talk – I would tune out. I have never been the least bit interested in anything relating to the actual job/hobby of gardening despite numerous attempts to get interested.

Okay, I got interested many times; but I didn’t remain interested, mostly because I was busy working at the university and bringing up the beautiful brat, Ming (who, by the way, isn’t interested in gardening either.)

Gardening was Anthony’s ‘thing’. His family (mother and younger brother) came here in the late 1950s to run a dairy farm and Anthony began planting things – camellias, palms, silver birches, flame trees, roses, citrus, hedges … and a whole lot of other stuff.

Up until the year before the nursing home, Anthony was still interested in planting, watering, and wandering about, in the garden. But he would get stuck! We only had the walking stick then so he would go out the back to check on a hose and then become paralysed and sometimes it took a whole hour to get him back to the house. Then, one day, when he was in his armchair in front of the fireplace, I told him not to move while I went up to the shop to get some supplies, only to find him face-down in the front yard; he’d fallen again!

Parkinson’s disease (and all of its off-shoots, including dementia) is an ever-changing condition that can make life tricky for those who care for family and friends inflicted. For example, sometimes I can show Anthony photos of home – the new chooks, the better-kept garden, the mowed lawns etc. and he will think he has been home.

But, at other times, Anthony will ask to come home and I will have to distract him. This is not because I don’t want him to come home; it’s because he is mostly immobile now so I actually can’t physically manage him. The guilt is ghastly of course but it is easily blitzed by my almost-daily company, in the nursing home, during the afternoons. And photos of the new chooks!

This morning this wonderful group of gardening people came over (it’s a group I’ve recently sort of joined) and each person had a good piece of advice for me. Plus everyone brings some produce to exchange – fascinating!

I am changing into a gardening person!

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

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jmgoyder

wings and things

An argument about Anthony’s smile

Ago

‘Who’s that silly old fool?’

Dilemma

There’s ‘a Julie’ in the mirror.

A brief moment of panic

Jigsawing

Leaps and bounds!

Missing Ming

Changing

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