jmgoyder

wings and things

“I’m gonna love you like I’m gonna lose you….”

There are many lines in this song https://www.youtube.com/watch?v=DC8FsIdVi9Y that echo one of my many recurring dreams about Anthony and me.

When I last posted, I described a dream where Ants had miraculously recovered; now that is definitely a beautiful dream.

A less beautiful, recurring dream is the one about death. In this dream, Anthony is dead and my dream-self is grief-stricken. But then my real-self wakes up from the dream and realises that he is alive after all. Many of the lyrics of the this song really got to me and are as follows:

I found myself dreaming…
Split second and you disappeared…
Wake up in tears with you by my side…
Breath of relief when I realised…
Whenever we’re standing…
No, we’re not promised tomorrow

Ming of course is not at all keen on either listening to, or reading, the lyrics of this song and, now that he has become musically superior to me, he likes to throw me his opinions:

It’s soooo repetitive, Mum!
It’s so cliched – oh, Mum, you can’t possibly like this song!
NO I DON’T WANT TO HEAR ABOUT YOUR ROMANCE!
Yes, let’s have a chat about love … I like this girl who….
NO I DON’T WANT TO HEAR ABOUT YOUR HEARTBREAK!
I’m off to my shed now, Mum. Love you!

I think I might just listen to the song one more time before I go to bed because I don’t care what the Ming says, this has become my song for Anthony.

32 Comments »

Easter Saturday, Parkinson’s disease and a picnic

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).

DSCN1244

51 Comments »

Harp happiness!

DSCN1771

58 Comments »

Ming’s Christmas presents

I am beside myself with excitement about Ming’s main Christmas present. It is being delivered today at 3pm while he is milking the cows. He has no idea and yesterday afternoon we sat outside and played a guessing game and he didn’t even come close – yay!

This is the first Christmas where we haven’t done the pillow case thing. Every year since he was born, we have put a big pillowcase at the end of his bed on Christmas Eve and I’ve secretly filled a matching pillowcase with presents. Then, in the very early hours of Christmas morning, I secretly swap the empty pillowcase for the full one and try (unsuccessfully) to go back to sleep. The Santa magicalness of this faded somewhat last year, not only because Ming was 17 and a little old for this but also because Anthony was so ill and, no matter how hard I tried, those gifts were bought in a state of stress rather than my usual euphoria.The brat was disappointed, I was despondent and Ants wasn’t even well enough to eat the huge meal of turkey, ham and all the trimmings. It was a complete fizzog.

So Ming decided that this Christmas there would be no pillowcase and that, instead, we would all get three presents each. So present 1 for Ming is a book about how to play the harp; and present 2 is a voucher for five harp lessons. Can you guess what present 3 is?

64 Comments »

Didgeridoo delights!

38 Comments »

Why wait?

I have been so excited about my idea for a Christmas present for Ming who has become so musical over the last few years and is now doing his Certificate 4 in music.

So anyway, he started volunteering at a local school called Djidi djidi Aboriginal school a few weeks ago. Coincidentally, he had become a great fan of Xavier Rudd’s music.

So my brilliant idea was to get Ming a didgeridoo for Christmas. I got it today and have hidden it so I can give it to him later this afternoon. Why wait!

Sneak peak:

Oh I love surprises! Ming knows he is getting a present but he has no idea what it is so I said if he helps me feed the birds and put them away, he will then have to sit at our picnic table and close his eyes until I say ‘okay’!

Excitement makes me a bit incoherent – ha!

58 Comments »

A pianist in the paddock

Yesterday, Anthony’s great-nephew, Michael Terren, a musician,┬ácame over to record in one of our front paddocks. And, no, this is not the kind of thing that happens here every day! I will keep you posted….

[Note: I have no idea why the comments are ‘off’ for this post – I can’t seem to get them ‘on’ again – oh well]

Comments Off on A pianist in the paddock