jmgoyder

wings and things

Anthony’s 78th birthday yesterday

The photos are courtesy of my ma, Meg, and nieces, Jane and Ashtyn. It was all fairly low key because of Anthony’s inability to cope in a crowd (with Parkinson’s disease, it is very difficult to focus on more than one thing).

Ants, Ming and I spoiled each other with birthday gifts yesterday; mine was a ridiculous amount of cheese; Ming’s was a Scottish kilt; and Anthony’s was a shirt that he was not enthralled with. And the sprinkling of friends and relatives was perfect. Jane, as usual, gave us all presents, Ashtyn took a million photos and my ma did the tea and coffee stuff. Geoff, a wonderful guy who used to work here, brought a cake which was great because Julie (not me, my sil) was complaining about the lack of one haha!

11585_10151791710357242_1094897652_n
15107_10151791710362242_1673166612_n
1555284_10151791710127242_1633168571_n
1604467_10151791710607242_2104078878_n
1604944_10151791711602242_104236478_n
1779090_10151791711152242_1550791875_n
1655886_10151791710652242_1696008847_n
1779772_10151791711017242_661467738_n
1901172_10151791711477242_1031335535_n

Ming took Ants back to the nursing home at around 4.30pm because he was exhausted. I would have invited more people but it would have been too hard. I did invite a few more but they couldn’t come which was actually a relief because I couldn’t remember who I had invited! Plus Ming and I wanted to take Ants over the road to have a drink with his brother but, by 4pmish, we could see this would be impossible. It took three of us to even get Ants into the car to go back to the nursing home, but I didn’t cry for a change.

Small parties are the best! Happy birthday, Ants.

PS. Would anyone like some cheese?

25 Comments »

Surreal

I saw Anthony this afternoon at the nursing home, and I showed him my blistered, peeling, bleeding hands and feet and told him that I had seen a doctor who had prescribed cortisone cream.

The doctor was more fascinated than concerned, when I told him I thought I had ‘pompholyx’. So, while I scratched away at my itchy hands and feet, he looked it up and confirmed my self-diagnosis. I just wish he hadn’t insisted on looking at my always-dirty-from-the-chook-yard feet – oh well.

Anyway, as I was telling Anthony all of this in my usual dramatic way, he pointed to his own hands and said he had the same thing. Well of course he didn’t have the same thing – it was just skin cancers on his old hands but I appreciated his empathy.

But then he whispered to me that it might be Parkinson’s disease and this is how our conversation unfolded:

Anthony: There is a doctor here who knows about it.
Me: About what?
Anthony: Your hands, this – he has black hair, young guy.
Me: Is he the doctor replacing the one on holidays?
Anthony: I don’t know, but don’t trust him, Jules.
Me: Why?
Anthony: He wants all of the Parkinson’s people in an experiment.
Me: Oh Ants it’s probably just a student doing a survey – is he asking you questions?
Anthony: Yes, personal. Don’t tell him anything, Jules.
Me: Ants, do you think you might be imagining or hallucinating some of this?
Anthony: I don’t know, maybe – oh and the family came this morning to take this place over.
Me: The Goyders?
Anthony: Yes – there’s a lot of money – be careful.
Me: I’ll check it out if you check out that whole doctor thing.
Anthony: One of them has red hair.
Me: That’s the priest isn’t it?
Anthony: No, the doctor – another one….
Me: I have to go now, Ants but I’ll be back tomorrow.
Anthony: Why do you have to go?
Me: It’s getting late, I have to get groceries, go to the chemist and look after Mingy.
Anthony: But where do you live now?
Me: I live at Bythorne, silly, on the farm!
Anthony: Do I still have a corner room there?
Me: Yes, but I can’t look after you overnight now because you are too heavy.
Anthony: But it’s still my farm.
Me: Your beautiful, beautiful farm, Ants, and Ming and I are taking care of it.

After this conversation, we hugged and kissed and I came home to Anthony’s resounding absence.

44 Comments »

Sundown

Ever since the peachicks entered our lives, over a week ago, everybird has become very attentive at sundown, including this young couple (the peahen is the second one to finally return although without chicks).
IMG_3081
Prince is also quite interested in how Queenie gets the chicks to bed (notice how he has lost all of his long tail feathers – all the peacocks have now).
IMG_3082
Gutsy9 is a bit jealous and is always right next to me. If I crouch down, she offers her neck to be stroked.
IMG_3084
While Queenie is stirring the chicks up, preparing them for their bedtime transition to the avocado tree, I put the geese, duck and turkey into their yard for the night. I have been trying to flood their pen in order to create a kind of pond for them and it is working.
IMG_3087
Queenie and the peachicks take ages to get ready for bed.
IMG_3107
So I take a photo of the fig tree while I wait.
IMG_3117
The younger peahen flies into the yard to encourage Queenie.
IMG_3119
King (undoubtedly the father) also flies into the yard and takes a protective stance.
IMG_3126
And then the magic begins. The bigger chick actually leads the way!
IMG_3127
Queenie has to help the smaller chick.
IMG_3128
But it comes back down again to say goodnight to me.
IMG_3129

This is around the same time (7.30-8pm) that Anthony often suffers ‘Sundowner syndrome’ so, once I leave the birds and go into the house, I always ring the nursing home to say goodnight to him. As he almost never answers the phone himself I usually have to get the nurse-in-charge to enable a conversation. Lately Ants has been okay, delusional but not upset. He often thinks he is either at boarding school, a hospital, a party, or a pub.

I tell him about the birds, and say goodnight, with a sense of tentative peace, which is probably how Queenie feels at the top of that avocado tree (can you spot her?)
IMG_3138

22 Comments »

Our marriage

For better or worse ….

When Anthony and I were married, we agreed to the usual vows including ‘for better or worse’. At the time, I was unconcerned that he was 23 years older. He, on the other hand, was very concerned, and worried that I might end up looking after an old man. At the time, we both laughed this off because we didn’t anticipate illness.

It seems unfair that my beautiful Anthony was inflicted with kidney cancer, diabetes, liver disease, prostate cancer, then (by far the worst), Parkinson’s disease – all within the first ten years of our marriage. For Ming to never have known this gorgeous, energetic, life-of-the-party person I fell in love with is a bit heartbreaking for me. I can only show Ming photos of when Anthony cuddled him, lifted him over fences to feed calves, taught him how to wash the car, strollered him into the dairy, slept with him crooked inside his shoulder space, toilet-trained him in about two hours when I was away at a conference, loved him with the energy of a new father, rejoiced in every single breath, sound, word, movement that Ming made.

Now, with the encroaching dementia that comes with advanced Parkinson’s disease, and Anthony’s deterioration in mobility, his wild hallucinations that he has been kidnapped, his outings with me fraught with bizarre stories of what I know couldn’t possibly have happened (eg. removal of a foetus from Ants), I sometimes cry.

Tonight, the nurse enabled a phone-call to Ants and, as soon as I heard his voice (usually it is soft now, but tonight it was loud and confident), my pent up tears broke.

Anthony: Jules -please don’t cry!

Me: It’s all just so hard, Ants – sorry.

Anthony: Jules, it is going to be okay.

In sickness and in health ….

The term ‘marriage’ implies commitment, loyalty, empathy, forgiveness, flexibility, and the ability to carry on, no matter what. In this sense, I am actually ‘married’ to a lot of people and this makes me feel on top of the world!

61 Comments »

Another little blog break

One of the unexpected bonuses of blogging for me has been the very real friendships formed, the mutual support, the shared humour, the shared grief. The lessons of life that I have learned through other people’s stories, and interactions, have taught me how to better do empathy and sympathy, and forced me to feel the difference.

Thanks so much for those of you who have commented, ‘liked’, and given me your friendships. For those of you who are bloggers, I am struggling at the moment to keep up with your writings, so please forgive me for that. For Facebook friends, same thing really!

Ming goes to court in three days. Apparently he and I simply appear, his charges will be read out, and the case will be adjourned by our lawyer until the end of February. So I really need to concentrate on all of this at least until the beginning of February, and blogging will go on the back burner for the time being.

Hard to believe now that when I began blogging it was all about the birds.

IMG_0362

75 Comments »

Itchy hands

For a couple of days now my hands have been painfully itchy (apparently there is a myth that this means I am coming into some unexpected money – ha!)

I noticed that on the sides of each of my fingers there are several miniature blisters so I thought I’d google the condition and here is what I found:

http://www.pompholyx.co.uk/your_experiences.html

Yes, it would seem that I have pompholyx which of course I have never heard of before. It’s a form of eczema apparently, and the causes include everything from humidity to stress (both of which fit my situation). I’m a little alarmed to find that it may get worse but I’m also relieved that it may simply go away of its own accord. As diseases go, it certainly isn’t serious, but the itchiness is driving me slightly crazy because I want to scratch my hands to bits.

Changing the subject: I wrote a post about Ming yesterday but I trashed it soon after because it seemed a bit disloyal to a son who is, after all, only 10% evil haha! But I realize it will already have been seen by some so, just to reassure you, he and I are once again on the same page, and my new nickname for him is “90%”.

Another update: even though I briefly sighted a couple of the peahens the other day, I haven’t seen them again and five are still missing. Nesting season is well and truly over so I think I will have to assume that they have either flown away (to get away from the peacocks’ attention), or have been killed by foxes. I am hoping it’s the former but I will never know. My peacock-knowledgeable friend, Mike, came over to see us yesterday because Anthony was home for the day and I asked him if the males would be okay without their ‘wives’ and he reassured me that they would, but it is still sad to have lost the girls. I guess, you never know, they might come back. That’s the risk with free-range but I never wanted to pen them in.

I’m off soon to go into the nursing home for the afternoon. It is only one street away from the beach so much cooler than here on the farm. Pompholyx is not contagious so that’s okay; I just hope he doesn’t notice that I have taken my wedding and engagement rings off because there were a couple of blisters underneath them. My ring finger feels really naked as, except to clean the rings, I have never taken them off.

Here are some photos of the peahens (much more pleasant than a photo of my blistered hands):

Queenie
IMG_0040

42 Comments »

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.

DSCN2206 (2)
DSCN2209
DSCN2208

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.

005
006
007
019
020
041
043

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!

44 Comments »

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!

img121
img122
IMG_0759

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.

64 Comments »

Parkinson’s disease and paranoia

Well I was wrong about Anthony not remembering last night’s incident. I just spoke to him on the phone earlier this morning and he said ‘they’ are doing terrible things to him and that last night he decided to fight back. “I wanted you to come in and see they are testing me.”

I tried to explain that the staff were just trying to put him to bed, but he wouldn’t accept that and so I said Ming and I would be in this afternoon. He said okay in a tired, defeated voice.

Since then I’ve been looking at various articles about Parkinson’s disease (PD) and Parkinson’s disease dementia (PDD) that discuss paranoia and psychosis in the latter stages of the disease. The fact that Anthony remembers last night, and still maintains that he is somehow under attack, indicates that paranoia has well and truly landed on our doorstep.

In the literature about PD that I’ve read over the years, it is stated by many that symptoms like hallucinations and paranoia are not only symptoms of the disease but may also be side-effects of the medications. What a dilemma! Ants has had hallucinations for years and lately I have noticed them getting worse (not in a disturbing way – it’s usually just dogs in the room) but in terms of frequency.

The increase in hallucinations exacerbates the paranoia because if Anthony thinks a tablecloth is his dessert, or that a dog is sitting on top of his television, or that Ming is sitting in an empty chair, or that a spoon is a lizard or that the polka-dots on my shirt are flies, then it stands to reason that he might also see a nurse as a torturer. Especially if it is late in the evening and he is already tired and confused.

It probably seems harsh that I yelled at Anthony on the phone last night but I have found this to be quite effective in the past when gentle words don’t work. Cruel to be kind I guess and it kind of shocks him into a tentative acceptance of what is going on. Last night he didn’t believe me that the nurses were nurses until I yelled at him. Obviously, if I lived closer than a half hour drive I would have gone into the nursing home, and maybe I should have gone in anyway, but the nurses reassured me on the phone that Anthony had calmed down a bit, so I let them handle the situation and I hoped for the best.

In the past, it has helped Anthony a lot when I have explained the link between PD and hallucinations so this afternoon, when Ming and I see him, I am also going to tell him about how paranoia is also part of his condition. I think if he knows this it will help him cope better with the night time ritual of being put to bed by the nurses.

Time will tell.

The photo is from two years ago with ‘Doc’ (now deceased) on Anthony’s lap, and ‘Jack’ the Irish terrier we got Anthony as a surprise birthday present when he still lived here at home.

IMG_0228

38 Comments »

One hour

It is 8.30pm and I haven’t seen Anthony today because Ming and I have been so busy cleaning up and organizing things for his 20th birthday party on the weekend. With at least 70 people expected, I am, to say the least, a tad nervous, but they are all wonderful kids, and a few of the parents are coming too in order to help keep things on an even keel!

So it is one of the rare days I haven’t seen Anthony. I warned him of this yesterday and he was okay about it and I tried to ring him a few times today but then gave up. He has definitely forgotten how to answer his phone now and I am becoming as frustrated as the many friends and relatives who keep trying to ring him.

When the nurse rang me half an hour ago, I was shocked to hear Anthony yelling ‘you bitch’ over and over in the background and when the nurse got me on the phone to him, he yelled at me too. Ming tried to talk him through taking the sedative (only needed occasionally) to no avail, and the nurse said she would ring me later. In the background I could hear Anthony yelling “get away from me, you bitch” and “Jules! Help me!” and to Ming, “I’m being tied up, Ming!” and “You’re like the rest of them, Jules, you bitch” and “I don’t trust you, come and get me right now, Jules!”

And this went on and on over several phone-calls back and forth from staff to me. This kind of episode doesn’t happen often – maybe once a month – so last time I took Ants to our doctor, I asked for something to calm him and he prescribed it. Tonight I said to the nurse-in-charge who first rang me that there was an emergency drug for this but, during a later phonecall, I could hear Anthony yelling “No!” and the nurse told me he wouldn’t take it or go to bed.

Sobbing with anxiety, I ended up yelling at Ants on the phone to pull himself together, take the pill, go to bed, stop yelling at the nurses, and that I would see him first thing in the morning. When he didn’t calm down, I screamed at him over the phone: “Stop it, Anthony, stop it! This is not you – it is the stupid disease – I will see you TOMORROW!”

I think he finally accepted this and the nursing staff said he was calming down and they would only ring me back if things escalated again.

And tomorrow? He won’t even remember. So was/is this a psychotic episode? Hallucinations? If so, what triggered this – not seeing me today?

But he sounded so terrified, hence his uncharacteristically abusive language. Five phone-calls, five minutes x five, and five moments when I decided to stop crying and to start yelling at him.

Will he be asleep by now? I don’t know, but I am so tired and defeated and shocked now that I’ve decided not to care about it until tomorrow. Otherwise I will go mad.

It is 9.30pm.

55 Comments »