jmgoyder

wings and things

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 9

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

by jmgoyder

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.

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Jan 7

Prayer

by jmgoyder

I am not really sure what prayer is any more, but, whatever it is, I have rediscovered it.

Earlier today I reblogged a post written for Robyn by her friend, Resa, but like many a reblog, it didn’t get read by that many people on my own blog, so I thought I would add something here to encourage people to check it out AND to check out Robyn’s own blog at:

My Story

I have known Robyn since I began blogging and was compelled by her courage in dealing with debilitating physical pain, her talent for photography and poetry, and her immediate and generous friendship to me. But a few months ago she stopped blogging and I knew things must be badly wrong, so I sent her a couple of tentative emails, worried that I might be intruding, but she replied and told me things were not so good.

Since then, I have worried and wondered and prayed and been scared for her so, it wasn’t until Resa posted about Robyn that I knew about her impending major hip surgery this week. I cannot imagine the kind of physical pain Robyn has endured over the years, but I can imagine the hope felt by Robyn, and her family and friends, that this surgery will vastly improve her condition, and that it will take away the pain.

Many people who follow this blog already know Robyn, but if you don’t, please spare a thought and a prayer for her this week. She is one of the best people I have ever been blessed to meet.

I salute you Robyn, over and over again.

This is a prayer.

blogging Family Friendship Grief Happiness

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Jan 3

If something is beyond your control, stop trying!

by jmgoyder

We have five peahens (female version of peacocks) who have been missing for about a week. As it is mating + nesting season here in Western Australia, it is quite likely that they are either hiding together and sitting on their eggs. But it is also likely that they have all been killed by foxes, and their eggs eaten.

All of the males are still around and call out constantly (imagine a wildcat’s yowl multiplied by several hundred decibels), but the only peahens still here are the two white Princesses and Gutsy9.

I have looked in the hayshed, listened for chicky sounds in the paddocks, and driven around the block in this little country town, searching for them – all to no avail – so now I don’t have any choice other than to give up and let nature take its course. I miss seeing those five girls fly into the trees at dusk and I hope they are okay and that we will see a few chicks but I am beginning to wonder now.

This didn’t happen last year because all but the two adults (King and Queenie) were still too young to do the mating thing properly – and I am still not quite sure how G9 survived before I found her!

I hope the peahens come back but maybe they are gone. There is no point trying to control what is, what was, and, sometimes, what will be, so I have stopped trying.

What will be will be.

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Animal blogging Friendship Happiness Wings

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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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Jan 1

Spam

by jmgoyder

Spam on the internet is so common now that most of us simply delete it but, when I went to do so today, I spotted this one which made me laugh.

I conceive this internet site contains some rattling excellent information for everyone : D.

I rather like the word “rattling”!

blogging

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Dec 31

The party animal is back!

by jmgoyder

Ming has taken the good car down south, with a best friend, to a New Year’s Eve party because he only has an automatic licence and our very old ute (truck) is manual, so guess who is driving that? Yes, me, and it is so ancient that just turning the steering wheel left and right etc., on even a short drive, is equivalent to a two-hour arm workout at the gym (not that I’ve ever done that).

We finally have a date for the court case – 22nd January – but until then Ming still has his driver’s licence, so he is making the most of it. Of course, since the car accident, I am very nervous about him driving but, except for the aberration in October, he is a careful driver and is not a drinker, so I hope they both have a great, safe time, but look forward to their return tomorrow.

Ming is off all of the strong painkillers now and just needs panadol occasionally; the bandages are off and he is definitely straighter again and the pre-op. pain has gone. It was a bit of a shock to see that the new scar is almost as long as the one from his original scoliosis operation (almost the whole length of his spine) so I guess they had to rummage around a bit to replace the two broken bits of titanium – yes two! and pack crushed bone from the bone bank all around the area to ensure it all knits back together.

I have probably posted these photos before, but I like them because they show his character. Yes, we have our arguments and conflicts, and we wrestle in different ways with the anxiety about the accident, the kids, the future, but we always talk things through. It is so good to see Ming bouncing back again.

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Happy New Year, Ming, my wonderful party animal son, and may all your dreams come true!

Note: Luckily he doesn’t read my blog any more because he would probably cringe at my sentimentality here – ha!

Animal blogging Family Friendship Happiness

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Dec 20

“Mummy!”

by jmgoyder

Ming was allowed to come home today, three days after his surgery which was a fantastic surprise (we were told he’d be in hospital until Christmas Eve). I’d been staying in a hotel for a couple of nights and coming and going to the hospital, but checked out yesterday, planning to visit Ming then go home to the farm to feed and water the dogs, birds and alpacas, only to be told he’d be discharged today! So I quickly rang a friend to see if she could do the animals and checked back into the hotel for another night.

Yesterday Ming was still attached to the pain+antibiotic drip, a catheter, and a blood drain thingy, oxygen, and he could hardly get out of bed and walk a few steps, but today he was free of the various tubes and fighting fit – amazing! It is 8pm here and we got home around an hour ago. Ming is in a lot of pain but has three kinds of painkillers so is now in bed.

One of the painkillers has a strange side-effect – Mummy love! It is so hilarious; on Tuesday evening when he finally came out of surgery, he kept looking at me woozily and saying, “Oh, Mummy, give me your hand, hold my hand, I want to have a cubble (cuddle), you are the best mummy in the whole wide world, oh I love you so much” etc. If I let his hand go for a moment, he would yell, “Mummy, I need your hand! Muuuuuuummmmmmmyyyyyyyyy!”

Now this would have been okay if (a) he had a private room, and (b) he had a quiet voice. But he was in a shared room with three men who were all chuckling every time Ming yelled out, “Mummy, hand – where’s your hand?” After a couple of hours of this I started to get a bit embarrassed and sick of holding his stupid hand! His nurse was laughing hysterically (but quietly) at his antics and, as Ming got sleepier, she helped me remove my hand from his so I could escape to my hotel and have a well-earned wine.

My hand is still aching from his grip – so funny!

And so absolutely wonderful!

Note: Thank you so much to my WordPress and Facebook, and other friends and family (especially my own mother) for all of your prayers, wishes and messages to us. I haven’t had time to reply properly but please know how much your comments, care and love is appreciated by Ming and Muuuuummmmmyyyyy!

Animal blogging Family Friendship Happiness

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Dec 14

I am changing my name to “Whoops”

by jmgoyder

A couple of days ago I wrote about Anthony’s 1963 stove that has recently died. My first ‘whoops’ was when I described it as being a tiny bit older than me when it is actually a tiny bit younger. I don’t feel the need to apologize to the stove since it’s dead anyway but I did want to correct that minor inaccuracy for blog posterity purposes.

My second ‘whoops’ was when one of my blog friends commented: “1963 a very good year… your stove lasted 50 years and so did our marriage.” I took this to mean that something had suddenly gone amiss with her marriage so I replied, “I’m so sorryxxx.” Then I went about my daily chores a bit sad for her.

Much later in the day, I logged on and saw that my friend had written: “What are you sorry about…… we’re still married… sorry if I confused you…” Oh, I was so relieved that her marriage was in such better shape than my stove that I laughed hysterically for a few moments, then she and I exchanged a few ‘haha’ messages.

I have done a few ‘whoopsies’ lately (I seem to have a talent for it), and some of them have gotten me into trouble, so I am beginning to realize that I need to think more carefully before I speak or write. This particular ‘whoopsie’ though was so funny that I am still laughing and laughing. I have not revealed the identity of the blogger who I ‘whoopsed’ because, well, privacy and all that, but if she is willing to comment you will all know.

I imagine she is still laughing too – argh – whoops!

blogging Family Friendship Happiness

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Dec 9

Intermission

by jmgoyder

I have learned a lot about blogging over the last couple of years since I began doing it, and I have made hundreds of mistakes like oversubscribing and then being overwhelmed by emails, unsubscribing then trying to find people again, trying to read everybody’s thoughts every day, not having time to comment, not having time to answer comments, etc!

One of the things I have discovered about the WordPress blogging world is an abundance of compassion and empathy and very real (albeit internetted) connection. I don’t even remember now what I intended with this blog with all its faux pas, and now obselete pages, and ideas and goals that went nowhere. I was surprised and delighted when people responded to my birdy posts, then extremely moved that those same people would offer such amazing support to me/us as we faced our traumas of life.

Ming’s pre-op. appointment is on Wednesday so the date for his surgery must be soon (we still don’t know). His court case is likely to coincide which is going to be tricky (we still don’t know that date either).

So this is a longwinded way of saying that I probably won’t have time to read, like or comment on the blogs I subscribe to (too many ha!) but I will still keep posting mine if that’s okay. I will try to catch up with your blogs in the new year.

Happy Christmas!

blogging Embarrassing moments Family Friendship

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