jmgoyder

wings and things

Missing Ming

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:

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I am so proud of this Ming of mine.

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Changing

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!

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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!

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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!

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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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Home is where the humour is!

After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.

1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and

2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.

The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.

Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.

So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.

For example:

Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?

Anthony: Yes (looking at me in a sneaky way).

Me: So, when exactly do you do these sit-ups?

Anthony: When they need doing.

He makes me laugh more than he makes me cry, this fantastically funny husband of mine!

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Boredom

When Ming was little he only once said, “Muuuuummmmm – I’m booooored!” because I immediately retorted, “The only children who ever get bored are booooooring themselves!” From that moment, he became more self-sufficient.

Okay, the above is a summary of several similar conversations with little Ming not long after I stopped being interested in finding the missing lego pieces in a Harry Potter castle or two.

Today, in the nursing home, helping Ants with his lunch, watching the television series, my mother’s visit – the almost clockwork regularity of this routine – struck me….

I recently read an article about how boredom can be a good thing, that it allows a person to sit back and re-perceive things and embrace the boredom as a kind of contentment. I do understand this because I have experienced it. And with Ants these hours are valuable time together as he gets more and more incapacitated.

This whole acceptance thing has been wonderful for all of us but I’m beginning to realise that I have also stunned myself with a kind of boredom. And, if boredom = boring, then I am guilty.

I will still spend many hours per day with Ants, but am now excited about writing more seriously; I’ve even planned a schedule of writing ….

No way will I let that boredom thing creep in.

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Sleep-chuckling

This afternoon I went into town to see Anthony. By the time I’d done bits and pieces of paperwork and housework, I almost didn’t go in after all. I didn’t feel like going in, but then the guilt got to me.

I arrived later in the afternoon than usual after doing a couple of in-town errands. Anthony was asleep in his armchair so I put a blanket on his knees, made sure the heater was on, put the television on mute and sat down next to him.

Usually Ants wakes up when he hears my voice or anybody’s voice but this afternoon he was in slumber mode and, no matter how much noise I made, he didn’t wake up! Nurses came and went, and he even swallowed his 4pm pills semi-asleep, then I had to talk on my phone for ages, then Ming came in after knocking off, then a couple of the nurses came back for a chat, other staff came in to change towels in the bathroom, a cup of tea was brought in ….

…. And throughout these couple of hours I watched (on and off) our latest television series with my left hand inside Anthony’s shirt collar. But he still didn’t wake up!

I wanted to tell him so many things: how the camellias are thriving (I’ve been taking little flowerettes in lately); that Ming has a new friend; that I’ll bring more chocolate tomorrow; that I missed him so much that looking at photos of our years before Parkinson’s sometimes made me cry; and how he was, to me and to Ming, the best example of a good father and husband.

Of course I have poured out these various profundities to Ants before but today he was so unwakeably asleep that I had to pour all of that stupid emotional stuff into the toilet paper in his bathroom.

On resuming my position by Anthony’s side, my hand back inside his collar, I wiped his chin then saw that he was smiling in his sleep. Once again I tried to wake him gently but it wasn’t possible to get much more than a few blinks and then he was asleep again.

Then, all of a sudden, Anthony began to chuckle in his sleep. Of course I have seen this before with him but only occasionally. This time, the chuckling went on and on, for well over an hour! It was amazing and beautiful and I am so glad I was there to witness this.

Tomorrow, I will pick camellias to take in, then I will tease him about his sleep-chuckling haha!

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‘Thunking’

IMG_4655Thinking versus thunking (I like thunking!)

3.10am: There is something quite exciting about hopping out of bed at 3am, wide awake, dashing to my writing room and switching on the computer and, aha, engaging with various friends. It seems somehow illicit to be up and about, drinking coffee while the sky is still black night, listening to absolute silence, reading thousands of words, smiling at photos on my screen ….

4.03am: Me chuckling that it is now just after 4am and nobody is going to tell me to go to bed.

4.38am: Ming’s favourite phrase is “Do what you want to do!” This type of 21-year-old wisdom sustains and motivates me whenever I am stuck. I feel grateful for this wonderful son of ours who, having recovered from two spinal surgeries, his father’s transition from home to nursing home, the car accident that injured so many and was his fault ….

For all of the above reasons I prefer to thunk rather than think because too much thinking can do your head in whereas thunking allows you to step aside. It might be just a tiny step (an ‘i’ to a ‘u’) but it makes a hell of a difference!

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Routine to the rescue

I’m not crazy about the idea of routine and now that I am once again a lady of leisure unemployed, there is even less incentive to exit the world of spontaneity and knuckle down.

In my recent interview with the finding-another-job people, I stated that I only wanted part-time work because I liked to spend the afternoons with Anthony in the nursing home. I also stated that I would be happy to do something completely different from my previous jobs (lecturer, nurse etc.) So it’s with a degree of mild excitement that I am now looking at outside-the-box possibilities. We shall see!

In the meantime, I have settled into a routine of being with Anthony from just before noon until about 4pm. This way, I can help him with his lunch; make sure he is warm enough; get him comfortable in his electrical armchair; give him chocolate, bananas and beer (but not all at the same time); and just be there, very close, one hand on his head and the other hand inside both of his.

This arrangement is great and our mutual friends and relatives now visit us at the nursing home. I am free to make visitors coffee or tea (our friend, C, visited this afternoon and it actually did feel like we were all home at the farm). I also have plenty of long-lasting snacks in Anthony’s cupboard, you know, like nuts and stuff, plus red wine, brandy, scotch and warm beer. The ready availability of this kind of sustenance also helps to make Anthony’s room homey and, I hope, welcoming.

If I am meeting friends for lunch, I simply go to see Anthony a bit later in the afternoon and then stay later in order to help him with his dinner. So I think the fact that I am now always there in the afternoon has become something he can now rely on; it gives both of us a definite daily expectation. It also frees my whole morning up so I can do other things like the exhilarating tasks of housework, washing and cooking for a fussy son ha!

Sometimes I feel incredibly lazy and unproductive sitting on the side of Anthony’s armchair with him, watching Dr Phil or a television series, or Master Chef. But, thanks to either the ‘pause’ or ‘mute’ buttons, I can always stop whatever show is on and we can converse with each other and/or visitors, AND the wonderful staff who are so affectionate and friendly to both of us

Today, Anthony was quite vocal and ‘with-it’ until about 3pm when he thought his mother’s eye-glasses were on the floor (yes, the hallucinations are getting worse but not distressing yet, like they used to be at home).

Anthony: You are popular, Jules.
Me: What do you mean?
Anthony: Everyone always wants to know when you will be here.
Me: No, it is YOU who is popular, Ants! The staff here love you!
Anthony: I don’t think so – I think it’s you.
Me: Rubbish, Ants!
Anthony: I beg to differ.

But a couple of hours after this lucid conversation, as I was about to leave to come home:

Me: I’m off now to do the grocery shopping, Ants, okay?
Anthony: Is everything in the shed?
Me: Of course!
Anthony: What about the calves?
Me: They’re fine; Ming is taking care of it – don’t worry.
Anthony: Don’t be too long, Jules.
Me: I’ll be back as soon as I can.

And, after one last kiss, hug, joke, lie, I come back home to this beautiful farm and begin to accept that this new routine is working.

Anthony’s face is no longer as expressionless as it was six months ago….

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He is smiling again!

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Day off

I decided to take a day off from visiting Anthony so just texted Ming to visit after work and he texted “Sure” – brilliant!

Instead I have been catching up with laundry and housework and further decluttering. It’s astounding how making myself accountable to Dina is so effective!

The weather is winter warm so at one point I took off my jacket and …
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Well at least it wasn’t a cockroach!

My feeding of wheat to the peafowl and guinnea fowl is deliberately haphazard because there is plenty of ‘food’ for them without the wheat and I don’t like them getting too dependent. Nevertheless as soon as they hear the back door open, they start running towards me – it’s so funny.
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Then there is quite a bit of competition as to who gets to eat first.
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Yes, I know she looks like Gutsy but she isn’t.

After they’ve eaten their fill, they bask in the winter sunshine.
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I’m a bit rusty with the photography but wanted to take a few new photos to show the women I’m visiting in the nursing home, three of whom are not in the dementia cottage. Yesterday I visited Gertrude (not her real name) who has only recently become a resident. She has Parkinson’s disease too and she was commiserating with me about Anthony who she said was “so young!” I guess 79-year-old people do seem young to 90-year-old people! At one point we discussed the pros and cons of diseases:

Gertrude: Tell me, which do you think is worse – Parkinson’s disease or that other one? (She pointed to her head)

Me: You mean Alzheimer’s disease?

Gertrude: Yes.

Me: Well Anthony has both now so I’m not sure ….

Gertrude: Both? This isn’t fair for him.

Me: Well it’s not Alzheimer’s exactly; it’s dementia caused by his kind of Parkinson’s disease.

Gertrude: I don’t have that.

Me: No, I can see that! You don’t have the shaking thing either and Anthony is the same.

Gertrude: I’m improving and sitting in this chair is so much better than lying in that bed.

Me: Do you have pain?

Gertrude: Just a bit of arthritis. Nothing much.

Me: I’m so glad. Anthony doesn’t have pain either – such a blessing.

We exchanged a smile and a hug and I went back to Anthony’s room which is in a different section.

Well I better get back to finishing the jobs I need to list as “done” for my email to Dina tonight!

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12 days old

Today I finally got to meet my niece’s baby. She and her husband are now the proud parents of a beautiful little boy and I am, for the second time, a proud great auntie.

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He is 12 days old. Welcome, little one, to the world.

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A way with words

Despite the fact that Ming always loathed anything to do with literacy when he was at school, he has a wonderful way with words and, like Anthony, often comes up with the funniest phrasing.

The other morning I was about to go in to see Anthony and, wanting to add a bit of colour to the day, now that the weather is wintery, I’d dressed in an orange shirt and a multi-coloured jacket that had a bit of orange in it. As I was about to leave the house, I had this brief conversation with Ming:

Me: Do you think this shirt clashes with the jacket, Ming?

There was a long pause as he looked at me, his brow furrowing in exactly the same way Anthony’s is furrowed.

Ming: I have a bit of a problem with the jacket, Mum.

Me: What? But it’s my favourite jacket!

Ming: Well it makes you look a bit like a hippy.

Me: I’ll have you know it was a very expensive jacket and everyone else loves it!

Ming: They must have very poor taste then.

Me: Well thanks a lot, Ming, for the vote of confidence! I had wanted to be like a kind of rainbow today for Anthony’s sake.

Ming: Oh! Sorry, Mum. In that case your outfit makes perfect sense but it is TOXIC to the fashion industry, just so you know.

I couldn’t stop laughing on my way into the nursing home and wondered if Ants would have the same reaction. So, on entering his room, I asked him how I looked.

Anthony: Messy.

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