jmgoyder

wings and things

Jan 27

Our marriage

by jmgoyder

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!

Family Grief Happiness LOVE STORY Parkinson's disease

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Jan 19

Another little blog break

by jmgoyder

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.

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blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Jan 19

Itchy hands

by jmgoyder

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):

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Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Jan 16

Having fun!

by jmgoyder

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!

Family Friendship Happiness LOVE STORY Parkinson's disease

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Jan 14

Another bride!

by jmgoyder

Today is my mother’s 58th wedding anniversary. I don’t always remember but I did today. Since my dad died 36 years ago it is not a day that we celebrate, but my mother has beautiful memories.

I love this picture of her on their wedding day:

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Family Friendship Happiness LOVE STORY

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Jan 13

Here comes the bride!

by jmgoyder

This afternoon my sister-in-law (married to my youngest brother) and their three younger children came to stay overnight at my mother’s house because they have hospital checkups up in Perth tomorrow and the next day.

Neither my family or theirs was able to attend my eldest niece’s wedding in Scotland a few months ago to her Scottish beau. So, as a special treat for all of us, Ashtyn came over in her wedding dress! Later tonight they will watch the wedding video which Ming and I have already seen. In fact, we were the first to see it – quite an honour as we got to watch it with the happy couple, and, even though I am not usually a wedding crier, I did shed a few happy tears.

It was so beautiful to see my sister-in-law, and my nieces and nephew (all of whom have nearly fully recovered from injuries sustained in the accident), and then, when Ashtyn arrived in her dress, it was such a buzz for all of us!

My other brother’s daughter (Ashtyn’s younger sister) will hopefully get her spinal brace off in a couple of days. As you can imagine, we are all in a state of perpetual hope that this will happen.

As a whole, our family is beginning to breathe a bit easier now. Well, Ashtyn had to take the wedding dress off and change before she could breathe at all, but that’s beside the point!

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Oh and my mother prepared an incredible meal for everyone of leftover pizzas from Ming’s party. Perfect!

Family Friendship Happiness

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Jan 12

Another psychotic episode?

by jmgoyder

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.

Anthony listening to speech

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

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Jan 9

One hour

by jmgoyder

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.

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Jan 2

Powerful!

by jmgoyder

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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Animal blogging Family Friendship Grief Happiness Parkinson's disease Wings

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Dec 25

Christmas day with my husband, son and mother.

by jmgoyder

Ants, Ming, Meg and me.

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Thanks, Ma, for providing the turkey and the massive pavlova, and enabling us all to have a very cruisy day. Thanks, weather, for not being too hot. Thanks, God, for making today’s church service interesting and down-to-earth. Thanks, Anthony, for squeezing my hand on our way back to the nursing home and wiping my unexpected tears. Thanks, Ming, for being almost okay post-op. and for your humour. Thanks, extended family, for our wonderful night at Meg’s at Christmas Eve, my niece and husband’s homecoming, my brother’s homecoming (just last night!) Oh the list is getting too long so … to be continued ha!

Family Friendship Happiness LOVE STORY Parkinson's disease

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