jmgoyder

wings and things

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.

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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.

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Apr 6

Sad sunset

by jmgoyder

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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.]

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Mar 31

Carer confessions

by jmgoyder

If you care for a loved one who has an illness, your good thoughts might sometimes be criss-crossed with bad thoughts like the following:

– I’m so sick of you and this situation!
– You aren’t who you were and I loathe the way you are now.
– Thanks for ruining my life!
– Please stop needing me!
– Thanks for giving me the guilts!
– Why can’t you just die instead of suffering like this?
– I hate loving you.

I told Anthony that sometimes I felt like this and he hugged me close and let me cry.

Family Friendship Grief LOVE STORY 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.]

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Mar 24

If you don’t know what to say, just shut up!

by jmgoyder

I’ve been trying to find a word that means the same thing as ‘stating the obvious’ but, apart from ‘duh’, there doesn’t seem to be one in the English language. ‘Redundant’ doesn’t quite cut it, ínanity’ only just comes close, so ‘duh’ it is.

A close relative of Anthony’s, who only visits him sporadically, and has baulked at my suggestion of getting him wheel-chair taxied to their place, sent me an email the other day. In the email it was stated that they had visited Anthony but didn’t have time at the moment to arrange for a taxi visit. The irony and inanity of the email’s concluding sentence astounded me:

We notice that he is very lonely.

Duh!

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Mar 23

Predicting unpredictability

by jmgoyder

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In advanced Parkinson’s disease, it is difficult to predict how any one day will unfold. PD is the kind of disease whereby the timing of medications is almost as important as the medications themselves.

Over the many years since Anthony’s diagnosis, the medications have been changed repeatedly to ‘keep up’ with the progression of the disease. The various timings have also been altered here and there because it’s so difficult to get it right.

In some ways, I quite like the idea of unpredictability – unexpected visitors, for example. In other ways, I don’t like unpredictability -unexpected visitors, for example (ha!)

With PD (especially when it includes a bit of fresh dementia), the unexpected visitors come in the form of constant unpredctability. Today, for instance, I visited Ants at the nursing lodge just after lunch. I predicted that he would have the usual post-meal droopiness but instead he was lively, lucid and he made me laugh.

This was just as unpredicted as the arrival of four wild galahs who seem to have made this place their home recently. So I guess there really isn’t much point attempting to predict the unpredictable, and I am going to stop trying, happily!

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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 15

Hardening the heart

by jmgoyder

I’m not sure if this is right or wrong, sensible or nonsensical, normal or not, but sometimes I have to harden my heart in a very deliberate way in order to ‘seize the day’.

We probably all do this to some extent – I’m not sure. All I know is that if Anthony is forlorn, or Ming is angry, or I am wondering/wandering, I seem to be able to harden my heart against itself.

And then I can breathe again.

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Mar 12

What did I say that for?

by jmgoyder

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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!

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