jmgoyder

wings and things

Having fun!

At 8pm tonight, I rang Anthony’s mobile phone and it was answered by a nurse and handed over to him. I have tried 8pm many a time (my method is to let the phone ring 11 times, hang up before it goes to the message bank, then try two more times in the same way).

Anyway, tonight I got to talk to him just as the nurses were putting him to bed. He was articulate, lucid, content and said he looked forward to seeing me tomorrow. It was such a normal conversation, he wasn’t in the least demented or delusional or distressed and his voice was so clear!

I have no idea whether he had been given what I call ‘the emergency pill’ (a sedative) or not, but it was such a relief that he was okay because I had been feeling guilty all day for not seeing him today.

The main reason I didn’t go in today was because I had a migraine. This was partly due to the relief of hearing that my niece was out of her spinal brace (extreme relief seems to trigger migraines with me), but also because it was my birthday yesterday, I’d had a fantastic lunch with my ma and Mingy.

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Then, in the evening, a heap of friends came over and it’s quite possible that I may have over-indulged in champagne and stale pizza.

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When it began to rain, we all came into the kitchen and, with the music, loud conversation, and drink-clinking, I was reminded of those long-ago days when I first met Anthony, the kitchen throbbing with life, the stereo blasting, the absolute sense of unrestricted fun.

And for a moment, I basked in the memory of my adventure into the heart of Anthony. His sense of fun was always contagious – absolutely – and now of course he can no longer be a part of this sort of frivolity because he is too sick, too incapacitated, too confused.

I think one of the main reasons I fell in love with him is because he transformed me from a shy, intense, introspective teenager into a person who had the capacity for fun! He didn’t even know it was my birthday yesterday and he thinks he has only been in the nursing home for a few weeks (it is nearly 2 years), and of course he doesn’t know we had the impromptu party last night.

More than anything in the world, I miss his loud laugh, his wild sense of fun, his gregariousness and life-of-the-partyness, his twinkling eyes when he glanced at my flustered face, his amazing hugs and huge strength of being, of character.

Anthony has given Ming and me a huge appreciation of having fun despite all of the odds, and, for this, I thank him to the sky.

Of course I also thank the fantastic friends who came over last night!

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Another psychotic episode?

It is nearly 9.30pm here and I just got a phone-call from the nurse-in-charge at the nursing home who wanted me to calm Anthony down because he had, once again, become aggressive and was very confused. Ming and I tried, on the phone, to talk him into going to bed but he just kept ranting and mumbling incoherently and Ming gave up. I then tried, over and over, to convince him that nobody was trying to hurt him and that the staff just wanted to put him to bed, but it became impossible, so I hung up and rang the nurse back and she said she’d never seen him like this (she is his favourite nurse).

I asked if I should come in but she said no and not to stress and they would sit him down in the foyer (where he was apparently standing and yelling) and wait for him to become too tired to resist going to bed. When I apologized to her, she was so reassuring that it would all be okay that I nearly burst into tears, and, when I said “I can’t bear it for him that he is becoming so distressed so often”, she said something comforting about how she and the staff knew him, and knew that this was different behaviour, and that they were sad too.

Once I’d hung up the phone, I marvelled that I had taken Anthony to a special friend’s 80th birthday party today and he/we had had a great time, despite him being in a wheelchair and not quite ‘with it’. In her speech, the birthday girl even thanked Ants for coming to the party and that really touched me (she and my ma have been friends forever).

It has been suggested to me that taking Anthony out might not be a good idea because, when I take him back to the nursing home, he seems more confused and exhausted than before, and he is, quite obviously, becoming a difficult patient/resident. But, what the hell – I WILL continue to take him out, and bring him home, because I love him and miss him and I want to hold his hand. (I have always found couples that constantly hold hands slightly nauseating – ha – but now I don’t!)

PS. If anyone calls me wonderful or amazing I will bop them! This is just how it is – how it is.

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This photo is of Ants three years ago, on his 75th birthday. He turns 78 in a few weeks – quite a survivor!

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Ming’s 20th birthday party

With around 70 guests (mostly 19-20 year-olds), a handful of parents, and a few of Ming’s older cousins, it was a resounding success. We did the lawns and madly tidied up beforehand:

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We set up Anthony’s ancient stereo system, which Ming has now figured out how to operate. It has the most amazing sound which some would call LOUD:

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We began to fill a cattle trough with ice and drinks as soon as it got a bit cooler (it was an extremely hot day):

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The first guests began to arrive and Ming was given some suitable adornments:

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More guests arrived:

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The pizzas arrived:

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I remained calm:

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Ming made a short speech dedicated to his favourite topic – himself:

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There was a bit of cigar debauchery but nothing else untoward happened …

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… Except for an unexpected pole dancer (my gorgeous, incorrigible niece):

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Here she is again, slightly more subdued, with her brother and husband.

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Thanks, Ash, for rocking the party up a few notches, for taking most of these photos, and for making Ming’s party the best ever!

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Like father like son!

Today was very interesting – and hot! Ming and I had to go into town to do last-minute jobs in preparation for his birthday party. We had to collect hire chairs, pay in advance for delivery of pizzas, buy a new cord for Anthony’s old stereo, and numerous other jobs.

I was the driver and we were using the old ute (truck), but I was also the lifter of anything heavy (like 24-packs of bottled water, coke, beer etc.) It must have seemed a bit odd that the young, robust-looking boy-man chatted happily with various store owners while the disheveled, perspiring mother did all the lifting and driving. Occasionally I would say, “He’s just had a back operation. I’m not usually his slave.”

Once we had done all of these jobs and were on our way to see Anthony, I told Ming how much he reminded me of Anthony when he was younger. Well the conversation didn’t start all that pleasantly:

Me: Why the hell did it take you 45 minutes to pay for the pizzas? Do you know how hot it is sitting out here in this crappy old ute in the full sun, waiting?

Ming: Oh! Sorry, Mum, I was just having a chat. It’s a family-owned business and they were great people. Both their kids work for them. I’m so glad we’re getting the pizzas from here and they gave me a fantastic discount and free delivery!

Me: Okay.

Ming: What’s wrong?

Me: Oh I cannot believe how much you are like Ants! Everywhere we ever went way back when he was young and fit, he would leave me in the car, go into a shop to buy something simple like a screwdriver and not come out for ages and ages. I would become absolutely furious with having to wait so long and would eventually stomp into the shop to find him talking up a storm with the proprietor, other staff, random customers, with everyone laughing and joking, with Anthony the loudest of all. He’d spot my scowling face and yell out, “Jules! Come and meet ….” and I would smooth my face back into a smile and join the ‘party’.

Ming: Do I do that?

Me: Well, yes. I mean you haven’t yet transformed a screwdriver purchase into a party but you certainly do know how to turn the mundane errands into social occasions. You also have a very loud presence.

Ming: So I’m like Dad was before I was born?

Me: Yes.

Ming: That’s great!

Finally, after all the jobs were done, and the ute was loaded up with chairs, drinks and other odds and ends, we went to the nursing home. I had asked Ming to help me explain to Ants that last night’s incident might be due to the paranoia which comes with Parkinson’s disease (he doesn’t know he has the dementia part). Our main task was to reassure Ants.

As we entered the nursing home there was a little flurry – the nursing manager pulled me aside and asked me about last night, a nurse going off duty told me she had tried to ring me this morning to say Ants was fine now, the nurse in charge for the afternoon and evening thought it might have been due to a new staff member last night. She even felt his antagonism might have been justified in some way and not just due to paranoia. Apparently Anthony had made the nursing home headlines in terms of drama!

All of these rushed conversations happened out of Anthony’s earshot of course and, meanwhile, Ming had already gone into Anthony’s room. Once I entered, Ming said, “Okay, Mum close the door so we can have a family conference.” Then we all sat close to each other and, after I kissed Anthony’s bleak-looking face and saw the anger in his eyes, Ming and I began to explain about paranoia and that if it happens again to remember that is is part of PD. I was so proud of Ming.

Ming: Dad, if you get like that again, really scared, you have to trust us on the phone because we don’t lie to you. The nurses were just trying to put you to bed and give you a pill.

Me: Ants, you were shouting at everyone, even me, that we were bitches.

Anthony: Well you are.

Me: Why me?

Anthony: You should have come in to help me.

Me: No Ants – I am not going to come all the way in here from the farm late at night just because you didn’t see me that day. How do you NOT know how much I love you? I was so worried last night and you made me cry!

Ming: Shut up, Mum, he doesn’t need to hear that. Dad, listen to me – you can’t go around calling nurses bitches okay!

Anthony: Why not? They took me to another town and then wouldn’t help me and someone is trying to get my money.

Ming: Dad, you are imagining some of this stuff because of the Parkinson’s.

Me: You know how you get those hallucinations and if I tell you it’s because of the Parkinson’s, you can cope?

Anthony: Yes.

Me: Well, I’ve been doing some research and paranoia is also part of Parkinson’s so, late at night, when the nurses are putting you to bed, you might think they aren’t nurses. Is that what happens?

Anthony: Yes.

Ming: So, Dad, you need to always remember that they are nurses and they are looking after you. If they ring us and we talk to you at night, you HAVE to trust us, okay?

Anthony: What about the bitches?

Ming: I know – they’re everywhere.

Me: He’s kidding, Ants!

The conversation was much longer and more convoluted than this, but Ming and I ended up laughing when we were able to tease a half smile into Anthony’s face. This was after he whispered to his father to swear in his head and not with his mouth.

I think next time I get a phone-call from the nursing home like last night’s I will hand it over to Ming. They are so uncannily alike!

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I think one of the best things about our three-way relationship – father, mother, son – is the soft-slicing honesty with which we have always communicated with each other. In this we are very very fortunate.

Oh yes, and the other interesting thing is that Anthony’s own father died when Ants was around Ming’s age and I remember Anthony telling me about how his dad was a lot of hard work beforehand, and that they clashed a lot. Ming clashes with Ants a lot too but today he broke the record in terms of compassion and, even if we get another alarming phone-call from the nursing home tonight, we will all be okay – all three of us.

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A peachick + a flame tree + pavlova = a great New Year’s day

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It was so funny watching the interaction between Anthony and my ever-curious little peahen, Gutsy9. But Anthony was much more interested in his glorious flame tree….

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And my mother’s pavlova!

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A tip for taking people with Parkinson’s disease out and about

As Anthony’s Parkinson’s disease (diagnosed several years ago now) has worsened, it has become increasingly difficult to take him out, or bring him home from the nursing home. For a few months last year, I relied on the wheelchair taxi because he had become so heavy to manouevre. Then, with some tweaking of his medications (by his specialists and doctors) and with a renewed sense of determination on my part, and special attention to timing, I began again to take him out by myself.

The timing of Parkinson’s disease medications is vital. If Anthony doesn’t get his 11am pill, he is paralysed by noon. The staff at the nursing home have been brilliant at getting this right. This means that if I pick him up for lunch he is able to walk (using a walker) to the car, get in with just a bit of a shove from me, get out again with a 1, 2, 3 pull up from me, walk into a cafe or whatever, eat some cake, and walk (using the walker again) back to the car.

His next scheduled pill for the day is 4pm but I really think it should be 3pm because that is the time that he always begins to falter, with his words, movements etc. so, if he is home, I give it to him early because we have had some extremely difficult situations where I just cannot get him to move his feet at all, let alone walk. I guess we are getting to the stage now where I have to bring both the walker and a wheelchair with us if we go out.

The person who most inspired me to take Anthony out more is Terry at http://terry1954.wordpress.com/

Terry has been looking after her brother, Al for years and Al doesn’t just have PD, he also has MSA (see Terry’s blog for what this is like). Al is now bedridden and on the brink of death with Terry constantly by his side. She has always inspired me in the way she copes with pragmatism and prayer in equal amounts.

But, before Al reached this stage, Terry used to to take him out and about, to his favourite shops and restaurants. I read about these escapades with mixture of delight and admiration, but what really struck me was how much joy this gave Terry herself. She is the person who gave me the impetus to take Anthony out and about more.

And, if I get the timing right, Ants and I can still have a rollicking time (well sort of!) However, here is where Terry and I are different; she took Al to places Al liked to go to (she is unselfish), whereas I now take Anthony to places I like to go (I am selfish).

However, that is my tip: instead of seeing it as a chore to take someone with PD or any other disease out of the nursing home for a bit of a break, think of where YOU would like to go. That way, the outing is transformed from a job into a joy.

Just don’t go to the beach (wheelchairs don’t do well on sand!)

This post is dedicated to Terry and Al.

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Out to lunch!

Today is the fifth day I have been out to lunch with various family and friends AND had visitors in the evening. I feel thoroughly resocialized!

Yesterday was lunch at the local tavern with Ming’s best mates’ families. The day before was lunch at a restaurant with Ming, Meg and Anthony, where Anthony proved that his appetite is still quite healthy by vacuuming up two dozen oysters naturale AND a chocolate dessert (even though he had already had his usual roast dinner at the nursing home!)

And then there was lunch with with an old friend whose husband is in hospital, lunch with Tony (which I already blogged about), lunch today with Anthony’s niece who is also my niece but she is older than I am but looks younger (grrr!), then drinks here with another old friend, her husband and gorgeous daughter, then last night a rollicking time with my first niece, Ash, and her Scottish husband, who have both moved back to Australia.

Happiness can be a bit exhausting. Oh yes, and the peahens are gradually returning!

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Twenty years ago….

Twenty years, nine hours and forty seven minutes ago I gave birth to a funny, round-headed, thin-limbed creature called Ming. Happy birthday, beautiful boy-man! Anthony and I love you very much.

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My uninhibited son!

Two and a half weeks ago, on the day of Ming’s second scoliosis operation, my oldest friend, Tony, came to visit us in the hospital. Ming was in one of those gowns they put you in before surgery and he was waiting in a very small room with several other gowned people. He had been told to remove his underwear but, as the gowns are so see-through, he hadn’t done so yet and his bright orange jocks were quite visible.

Well, just before Tony arrived, Ming, thinking he might be called at any moment, went to the bathroom and removed the jocks and handed them to me all scrunched up to put in my handbag. “It feels really weird, Mum!” he said to me/to the whole room (even when he speaks quietly his voice booms!) He had been given a premed. of some sort which had disinhibited his already uninhibited personality.

A few minutes later, Tony texted me to say he was in the hospital cafe so I went downstairs and brought him back to the little waiting room to see Ming. As soon as he saw Tony, he stood up and shook hands, then said, “My genitalia are exposed.”

Tony’s jaw dropped slightly but he is used to Ming’s idiosyncratic statements so he just said something like, “Thank you for that information,” and I cracked up laughing when I saw the other people in the room smiling at this odd exchange.

Yesterday, Ming and I had lunch with Tony in the town where we always meet, halfway between where we live and Perth, where Tony lives. It was wonderful – Tony can make me laugh like nobody else, and I love watching the way he and Ming banter. It actually struck me, at one point, that Tony is like a second father to Ming, especially when Ming jokingly said “Thanks, Dad” when Tony paid for our lunch!

Thanks, Tony – your friendship is a gift.

This is us yesterday.

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Powerful!

I follow the blog of a wonderful woman, Nicole Cody, who writes with such positive, energetic wisdom that sometimes it takes my breath away. In her post today, she invites us to choose a “Power Word” for 2014 – see http://cauldronsandcupcakes.com/

Lots of possible words came to mind: gratitude, laughter, healing, energy, harmony … but then I suddenly realized that I wanted my own power word to be the word, power itself. Or, to be more exact, the word, powerful!

POWERFUL – yes, I like it!

For me, this word doesn’t mean that I want to stomp, Godzilla-like, on anybody or anything; instead, it signifies a transition from the flailing, exhausted, try-too-hard strength I already have to a more spiritual, muscle-bound ability to contend with all 2014’s challenges, and embrace all of 2014’s joys with the kind of gratitude that is loud and fierce and inviolable.

The weird thing is that as soon as I chose my power word, my limp became a leap, and my wrinkled heart grinned itself into a balloon.

Thank you, Nicole! This photo of Prince is for you.

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