jmgoyder

wings and things

Apr 18

Refrain

by jmgoyder

I am so sick of saying the same thing over and over and over and over and over again.

Today, when I got Anthony home for the afternoon, he asked, for the millionth time if he could stay the night. And for the millionth time, I reminded him that he was in the high care section of the nursing lodge and needed two people to lift him etc.

He looked at me, his eyes hard, and said, “So now I know you don’t care about me anymore.”

It was too much for me to bear and I lost my temper, interrupting this regular refrain with a few minutes of hysterical rage which woke us both up and, thankfully, ended in a mutually apologetic hug.

Then the wheelchair taxi arrived to take Ants home.

Refrain.

Family Grief Marriage Parkinson's disease Parkinson's disease dementia Uncategorized

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Apr 14

Millionaire’s coffee

by jmgoyder

A few years ago, before Anthony became so incapacitated with Parkinson’s disease, we used to go to a restaurant on the beachfront after every doctor’s appointment.

We went to this restaurant after his diabetes diagnosis and we ate apple pie with cream and icecream defiantly.

We went to this restaurant after his liver disease diagnosis and drank a bottle of wine defiantly.

We went to this restaurant after his prostate cancer diagnosis and ordered the banquet deal defiantly.

We went to this restaurant after his Parkinson’s disease diagnosis and decided to try the millionaire’s coffee.

Today I decided to take Ants to this restaurant (which now has new owners). It’s only a few blocks from the nursing lodge, so very convenient, but I was still really nervous because of the unpredictability of PD.

I became even more nervous when Ants had difficulty walking, with his walker thingy, to the car and getting in. But, once his uncooperative feet were in, and his seatbelt was on, I started to feel more optimistic.

And it was a success! Ants was able to use the walker to get into the restaurant and we had an ocean view, a half bottle of wine, some fantastic prawns and scallops, and some bits of conversation. His PDD kept making the conversation weird but every time he said something crazy, I just laughed and squeezed his hand and he squeezed back.

After we’d finished eating, I decided to order his favourite coffee, but the new owners of the restaurant had never heard of a millionaire’s coffee so I had to tell them how! The only trouble is that I couldn’t remember which three liqueurs went into it so I just asked them to use their imaginations.

They did a good job! Well I think they did – my head is still spinning – haha.

Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Apr 11

Fixing fences

by jmgoyder

This afternoon I finally got hold of Anthony on the phone. I had tried numerous times during the day because I was worried about yesterday as a nurse had rung me in the evening to report a fall just after he got back from here.

You see, yesterday I got Ants taxied home again but earlier than usual. I wanted to see if a whole day home would work because usually it’s just for a few hours and he gets upset to have to leave so soon.

So he arrived at 11am which coincided with one of his medication times. I gave him the pill, and Ming, Ants and I sat out on the front veranda making the kind of smalltalk you make when one person can’t participate.

At around noon the drug kicked in and Ants was able to walk, with our help, into the house. We then watched a comedy on TV, and they ate pancakes with maple syrup and cream for lunch (Ming’s idea – yuck!)

By 1.30pm Ants had again become wobbly so I slowly shuffled him to the bed and he slept until 3pm. I helped him up and outside again and then Ming and I got him into the wheelchair ready for the taxi.

This might not sound like a wonderful day but it was!

But this afternoon’s conversation was a bit of a blow. When I finally resorted to ringing the nurses to help Anthony answer the phone, this is what we said to each other:

Me: Ants, I’ve been ringing you all day. Why can’t you remember how to answer the phone? I’ve been so worried about your fall.

Anthony: Well, there’s a reason for that – we don’t get along anymore.

Me: What! What are you talking about?

Anthony: The fence.

Me: Which fence?

Anthony: On farms, you know – broken fences.

Me: No, all of the fences are fixed now, Ants.

Anthony: But us – the fence I mean – it’s broken.

Me: I don’t understand what you mean!

Anthony: I’m sorry, I didn’t mean it, I was just joking. Jules, don’t cry please.

….

Okay, I got over this ghastly phonecall and we both ended up saying áll the I-love-you stuff.

I don’t think this fence can be fixed, but I guess it can be mended whenever we fall on it.

Family Grief Happiness LOVE STORY Parkinson's disease Parkinson's disease dementia Teenagers

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Apr 8

Mixed emotions

by jmgoyder

pea 557

When I was 12 and struggling with my all-over-the-place thoughts and feelings, and worried that I was abnormal, my mother wisely reassured me that I was simply suffering from mixed emotions and that this was normal for 12-year-olds.

At the time, I found it immensely comforting that there was a name for my ‘problem’ – mixed emotions.

Now, all these years later, it is happening again – that simultaneous sad/happy thing but of course it doesn’t sound very convincing when you decline an invitation to lunch, for instance, by saying, “I can’t today because I am sick with mixed emotions.” A migraine is a much better excuse.

Yesterday afternoon, Anthony was taxied home and the handful of friends I’d invited (he doesn’t cope well with more than a handful) all arrived with food and drinks, and I was filled with happiness. It was a delightful afternoon and resembled the hundreds of delightful afternoons when Ants was well. I used to be amazed at how Ants would never sit down, would constantly replenish half empty glasses, would shout with laughter at his own anecdotes, turn the music up and dance, bear hug me, wink at me, grin at me. The good old days.

Of course now that Ants can’t stand up easily, or wink, or grin, or shout with laughter, or dance, or hug, or even follow an anecdote, let alone tell one, it’s different. Don’t get me wrong – it was still wonderful, but when the taxi arrived to take him back, the sad kind of stole my smile, and our little crowd went from noisy to quiet.

After Ants had gone, the frivolity resumed, but at a lower key for me and, later in the evening, when everyone had gone, I felt such a surge of grief and nostalgia that I had to remind myself to breathe.

Mixed emotions.

(But at least I didn’t injure the taxi driver this time, even though he mistook me for Anthony’s daughter!)

Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Apr 6

Sad sunset

by jmgoyder

pea 574

I have been trying so hard lately to be positive, but tonight, a nurse rang me asking me to try and convince Ants to take his pills. Eventually my voice on his phone worked and the nurse was able to give him his pills.

Ants was distressed and confused and aggro: this scared me.

What a wonderful nurse to ring me like that. I am so relieved to know that Ants is okay in this nursing lodge, but I am constantly anxious for him now that the dementia is happening.

Ants is coming home for the afternoon tomorrow so I’ve invited a few friends. Oh I so hope it all works out!

[Note to blogfriends: I can’t keep up with reading blogs at the moment, but will catch up soon.]

blogging Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Mar 28

20th wedding anniversary!

by jmgoyder

Yesterday was our 20th wedding anniversary and Anthony forgot.

So did I.

[Actually, we always forget for some reason but I thought ‘So did I’ was a rather good punchline – ha!]

My mother usually reminds us but she’s in hospital and will be for some time. It was only when I was collecting stuff from her house to take into the hospital that I saw her note – ‘March 27-Ants & Julie anniversary’.

Ants is coming home for the day tomorrow – Good Friday – and I’m not sure whether to tell him about our anniversary or not because it might make him a bit sad and nostalgic.

20 years! Aren’t I supposed to get some sort of present?

[Note to other bloggers – I am having difficulty keeping up with your posts and comments – will catch up asap.]

blogging Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Mar 24

Socks

by jmgoyder

I found some old socks –
the football socks you once wore
to get the cows in.

Your favourite socks!
But you never played football –
you just liked to run….

I put your socks on
and now I will go to bed
With you warming me.

Family Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Mar 21

Where is Mum?

by jmgoyder

I got a bit of a shock yesterday when Anthony asked if I knew where his mum was.

Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Mar 19

Empathy requires effort

by jmgoyder

A few thing have happened lately that have drawn my attention to the notion of empathy – that ability to identify with someone else’s suffering and to feel it too. This is not as easy as sympathy.

Okay the first thing that made me think about empathy was (as blogged previously) Ming’s inability to feel it for Anthony. Then, last night, after Ming got home from his weekend away, he was obviously unconcerned about my asthma until I said, “Why don’t you care?”

“Because I don’t know what it feels like, Mum!” he said. Ïf you want me to care, you have to tell me to; if you want my support, you have to tell me how.”

Food for thought: empathy doesn’t necessarily come naturally.

The second thing that made me think about empathy was a blogpost by a friend whose beautiful daughter died recently after years of suffering. This mother’s grief is raw and almost unbearable to read about, and my sympathy for her is enormous, but what about my empathy?

So I tried to imagine it; I tried to imagine my only child, Ming, dying and dead, but I couldn’t get my imagination to get beyond his dying to his death because it was too hard. I felt so wretched with grief I had to stop my imagination.

Food for thought: Empathy does come naturally to some and I thought I was one of those, but I’m not sure anymore whether it is possible to feel empathy (automatically) for someone who has experienced something that you haven’t.

How can 19-year-old Ming feel empathy for his 77-year-old father? Is it something that needs to be taught?

I wonder.

blogging Family Friendship Grief

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Mar 12

What did I say that for?

by jmgoyder

pea 429

This morning I wrote a post about coincidences in which I said, I was 19 when my father died. Ming is 19 now and his father is dying.”

I don’t know why I said something so morbid when I wasn’t feeling morbid. I was feeling a curious mixture of fatalism and resignatiom, I guess, but not morbid.

Now, however, I do feel morbid because of my own stupid sentences and I wish I had said, I was 19 when my father died. Ming is 19 now and his father is alive.

Some people philosophize that you begin to die as soon as you are conceived which is, of course, true, but not a particularly pleasant way of thinking about life.

When Anthony was diagnosed with advanced prostate cancer and given 1-3 years to live (several years ago!) we were utterly devastated. I remember tearfully telling a friend and he said, Well, we are all dying aren’t we and another friend said, well, he’s had a good life. Neither of these comments were helpful, but they were true.

Anthony has outlived his prostate cancer prognosis only to fall into the arms of Parkinson’s disease. But I no longer think of this as cruel and tragic and neither does Anthony. In fact I have never seen the tiniest sign of self-pity from him in all these many years of illness.

Yes, Anthony is dying, but he is also living. And that’s a coincidence.

Oh yes and all the geese are alive and well, especially Godfrey!

blogging Family Friendship LOVE STORY

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