jmgoyder

wings and things

Apr 1

Blog blessings

by jmgoyder

I began blogging in November 2011, with no clear intention other than to write something every day, which I have for the most part. The subject matter meandered from birds to Anthony’s Parkinson’s disease, to Ming’s teenage-hood and scoliosis, to our personal struggles. I dabbled in novel and romance writing, briefly promoted my book about Alzheimer’s disease, attempted some poetry, began to write about Anthony’s and my love story, posted pictures, and generally wrote a whole lot of this-and-that.

In view of the miscellaneousness of my posts, I suppose “Wings and Things” isn’t a bad sort of blog title so I’m sticking with that because it allows me to meander in the usual way. This is obviously not good for the stats as themed blogs get more ‘hits’ but, despite wanting to make more people aware dementia sufferers should be treated with more respect, I don’t care any more about the stats.

One of the things that has astounded me about my blog journey so far has been the incredible friendships wrought (with people I may never meet in person), and the mutual support system enabled via WordPress. The blogs I subscribe to are an eclectic mix of bird, photography, illness, writing, grief, dementia and philosophical blogs (to name a few) and it is often very difficult to keep up. The good thing is that most bloggers understand this difficulty and don’t mind if you don’t read their every word/post – phew!

I would never go to a support group, I already have enough friends in my non-blog life, and I am not naturally gregarious, so I am rather astounded at how much I have come to depend on the bloggers with whom I have become close – an extraordinary community made up of some of the kindest people I have ever come across. I also enjoy offering my own friendship and support to these fellow bloggers and this has become a meaningful part of my life.

This blog has also connected me better to my already-there friends and family, sometimes disconcertingly. For example, I said to my friend the other day, “Guess what happened yesterday?” and she said, “I already know, Jules – I read your blog.”

Oh!

So, in the spirit of miscellaneous gratitude, here is Diamond, our shyest goose….

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…. saying thank you with me!

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

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Mar 31

The ‘old girl’

by jmgoyder

Ming does most of the phone jobs now – mostly because he loves the phone and I hate the phone. Even before our landline became obselete, and my mobile wouldn’t work inside the house, and numerous other phone problems, I didn’t like picking up this thing and not knowing who I would be talking to. I guess you could say I have a bit of a phone phobia.

But Ming loves it and is exactly like Anthony used to be on the phone – loud, charming, ocker, matey and cheeky. I overheard Ming on his mobile today, asking the bank to alter a couple of things so we could pay bills more easily online. Then I heard him say to whoever he was talking to: “Ha, yeah well I’m just trying to sort a few things out for the old girl.”

Come to think of it, I’ve heard him describe me this way a few times now, but only on the phone for some reason. Hell, I am only 55!

Family Friendship

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Mar 28

Stress question

by jmgoyder

Why is it that some people cope better than others with stress? This has always mystified me. How?

For example: two people can experience the exact same grief, joy, shock etc. and one will take the experience in his/her stride, and the other one will be emotionally overwhelmed. The former person is the one who organizes the funeral, party, and/or contingency plan. The latter person, bathed in grief, joy, shock, may not be able to get out of bed in the morning.

Lately, I have felt a mixture of these two responses to sudden change and I have to admit that, mostly, I am the latter person. No matter how much I want pragmatism to beat the hell out of misery, it doesn’t always work and, when I took Ants for a drive today and his head bent to the left side (Parkinson’s), and he kept forgetting, then remembering again (due to my prompts haha!) that is was our 21st wedding anniversary.

Perhaps the answer to the stress question is this: Accept what is; make the most of every single hour of every single day; and get back on that bicycle!

It has been a difficult few months so thanks to all friends for encouraging comments to me and my extended family. Ming’s court case (adjourned three times now) is happening mid-April and there is a bit of hope that his dangerous driving charge might be downgraded thanks to the letters from my brothers’ families to the police.

Oh to be a duck!

IMG_3773

Animal blogging Family Friendship Grief Happiness LOVE STORY

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Mar 27

Heather

by jmgoyder

When we first moved to Bunbury, Western Australia, after five years in Canada and three years in Papua New Guinea, we were befriended by two extraordinary families. At the time, I was 15 and my brothers were a bit younger. The way in which our friendship grew with these two families is a very long story and definitely worth telling, but that is not for this post.

This post is about Heather.

Tonight I opened a silver envelope within which was a card from one of my mother’s best friends, Heather, a member of one the above families. Inside the card she had written the most beautiful message to me – a message of comfort and love and with a buoyant positivity (which she apologized for because she is rather famous for her positive attitude that she thinks people don’t always like). Well I like it very much!

Heather was my mentor when I was a teenager struggling with the culture shock of transitioning from PNG to a private school in Bunbury and she, her husband, and her children, helped me to adjust. They were all so kind.

So this is just to say, Heather, that I DO like your positivity and I have drawn such strength from your kindness to me in this card. The fact that you can be bothered to make this gesture, even though you and your family have your own challenges, joys and busyness, amazes me. I didn’t realize it until now but I have always drawn strength from your incredible ability to see the best in people and situations AND your inviolable faith.

Heather’s card was sitting beneath a mountain of bills and letters and all that stuff I loathe doing. Its envelope caught the light, so I picked it up out of the stack of old mail and opened it today. And my heart did one of those somersaulty things with gratitude to have someone like this in my life.

I can’t just thank you, Heather; I salute you. Much love
– Julie

blogging Family Friendship Grief Happiness

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Mar 26

To my sister-in-law, Pat

by jmgoyder

Dear Pat

I am finding it very difficult to believe you are gone because Anthony and I were just talking about you the other day, about your pink jacket, the fact that you made the effort to come 200 kilometers south for his 75th birthday even though you and your family had to go back to Perth that same night. You and Anthony sat next to each other all night and I was a teensy bit jealous!

Anthony and Pat2

And I remember your 90th – the joy of it, and your family, and your beautiful pink jacket, and how much you loved the photo I gave you of Anthony sitting on his motorbike with baby Ming. In amongst the food, frivolity, speeches and chitchat, you shone bright – always, always with a glint in your eyes, a mixture of wisdom and wit. And once again, you and Anthony sat next to each other.

The weekly phone-calls, before your hearing failed and Anthony had gone into the nursing home, were a highlight for us. Ming would answer the phone and yell “It’s Auntie Pat, you guys!”

I remember being a bit nervous of you when I married your little brother even though, at the time, he was 57 and you were the age he is now. It took you a little while to approve of me but, when you did, you gave me your full older-sister-approval and I learned how to answer you back!

Even though I never had a chance to tell you when you were still alive, I want you to know, Pat, that you taught me how to be assertive, how not to take nonsense, and how to love unconditionally. You also taught me the art of a brandy before salmon mornay – and the way you and John smiled at each other is an image that is imprinted on my mind forever.

I know, if I had tried to say these things to you in years gone by, you would probably have shrugged them off as sentimental because, like Anthony, you were/are pragmatic and that is one of your many legacies.

At your 90th, I was sitting next to Mary, the daughter who lived with you and she said, quietly, with her eyes full of tears, that it was a privilege to look after you. And, that day, seeing how much all of your children and grandchildren loved you, I wished for a moment that I had had more than one child.

One of the things I will miss most is those booming phone conversations you had with Ming, both of you shouting into the receiver so loudly that I could hear the whole thing. Your first question was always “How is Anthony?” and Ming and I would reassure you.

And remember that time you came to Glengarry Hospital, when Anthony was being assessed for a new medication regime? You created a bit of a scene with your “What are you doing with my brother?” The nursing staff loved you immediately!

I will miss you so much, Pat. And the first thing I am going to do, after your funeral, is to buy a pink jacket. My/our deepest sympathy to your beautiful children and grandchildren. You were – you ARE unforgettable.

Lots of love
Julie, Ants and Ming

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

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Mar 20

“I have accepted my Parkinson’s.”

by jmgoyder

Today I met one of the Anglican priests from my mother’s church (well, it’s my church too but I hardly ever go), because I had asked her to pray for me and my pompholyx and for Ants too. She is a beautiful person about my age who came out to the farm a few days after Ming’s car accident and prayed for us and for the whole family, and her name is Sarah.

We met in the parking lot of the nursing home at 1.30pm which was, coincidentally, the same time my mother was planning to meet me to visit Ants. I would have gone into the nursing home with Sarah but unfortunately, after showing her my hands, I burst into tears so had to ring my ma and say Sarah and I would do the praying thing outside and come into the nursing home presently.

So Sarah and I found a seat outside and she prayed and anointed my hands and blessed me while my nose dribbled as I stopped crying. Neither of us had a tissue so I had to wipe my nose on my shirt before we joined my ma and Ants.

They were sitting outside in a little garden area and, after the introductions and greetings, not knowing how much time Sarah had, I got straight to the point.

Me: “Ants, remember how Sister R. used to come over and anoint you with her holy oil?” (Sister R. is a Catholic nun who has been our friend for decades and, despite Anthony not being the least bit religiously inclined, he used to love this).

Ants: “Yes.”

Me: “Well Sarah can do that now.”

Sarah: “Do you want me to, Anthony?”

Anthony: “Mmmm.”

Me: “Yes.”

So Sarah prayed for Ants and anointed him and then we all sat back and had a conversation.

We talked a lot about life, the accident, our kids (Sarah has a daughter nearly the same age as Ming), my mother’s unfortunate collision with a glass door the other day, and my hands. Then Sarah asked Anthony various questions – about his childhood, his siblings, Ming and so on – that elicited answers. I admired her skill at drawing him out because his conversational skills are now very hesitant. Sarah was also very good at waiting silently for his response – fantastic!

Then, in answer to a question about something entirely different, Ants suddenly said this: “I have accepted my Parkinson’s and I still have the power to swear at people I don’t like.”

Oh how much I love this man!

Thank you, Anthony.
Thank you, Mother.
Thank you, Sarah.
Thank you, God (but only if you heal my hands and foot).

On the other hand, maybe I will have to accept my Pompholyx, just as Anthony has accepted his Parkinson’s disease.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Mar 18

Things that go bump in the night

by jmgoyder

You know the other night when Ming and I had that argument and he fled from my wrath to his shed? Well, the argument was about the fact that even though he moved into his shed months ago, he still hadn’t cleared a lot of his stuff out of his bedroom in the house. I had been extreeeeeeeemely patient about his procrastination until that night, when I snapped, the reason being that this bedroom was to become my new office so that I can get out of this little back veranda hovel that the mice like to invade (they like paper).

After Ming stomped off to his shed, muttering things like “You always make me feel so bad”, and me shouting, “Just clear your stuff out tomorrow or I will chuck it all out the front door!” he and I reconciled via texts and he promised to do the job the next day.

Well he kept his promise because at exactly midnight I was awoken by some very noisy activity in his ex-bedroom (which is adjacent to mine). I lay there grinning like a hyena listening to what I realized was Ming moving his stuff out of that room. This went on for about an hour and then all was quiet again, I tiptoed into the next room to find it totally empty! Elation! Then, on the hall table, Ming had left a long list of things he would do when the sun came up. I grinned again and went back to bed.

It wasn’t until after breakfast, that I discovered that he had simply moved all of his stuff into the living room! But it’s okay now – all of it is in his shed which now resembles the chaos of a crime scene (what happened to my neat and tidy boy?)

But my room is ready for me now and I am so excited! It is a room with lots of history because it used to be Anthony’s mother’s room, then it was the office where I wrote my PhD, then it was Ming’s childhood bedroom. We have now taken the huge musk-pink carpet mat out (over 40 years old) to reveal the beautiful jarrah floorboards, and Ming has vacuumed from corner to corner and cleaned the windows inside and out, and we have arranged for a handyman to fix the cracks and holes in the wall and ceiling. Then we will get my painter friend in to paint it crimson (just joking – white!)

It is a big, light-filled room with a view to the front paddock from the north-facing windows. That’s where I will put my desk, computer etc. tomorrow!

The interesting thing about this little adventure is that, for me, it feels like I will have my own beautiful space in this house for the first time in 20 years. It’s not that I felt deprived but, having married an older man and moved into an already established household, I have never quite felt a sense of ownership and, in terms of making any sort of mark, I have done very little in the way of interior decorating, renovating or changing anything – so much so that when Anthony’s relatives drop in they feel they have stepped back in time!

I have decided to call this old/new room my writing room. A new beginning. It will be wonderful to move out of the hovel of an office I am in now where things go bump in the night constantly, especially in the ceiling where rodents, goannas and possibly snakes have sprinting competitions.

Ah, the joy of change!

Animal blogging Family Friendship Happiness LOVE STORY Wings

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Mar 17

Taboo topic: poo!

by jmgoyder

We all do it but, after the age of around 4 or 5, it becomes a bit taboo to talk about poo. It is an intrinsic part of everyday life but is clothed in secrecy. In nursing homes and hospitals, however, the activity of the bowels is all-important: “Have you used your bowels today, Mr Smith?”

Years ago, when I worked in a hostel for multihandicapped (I don’t know if that is the politically correct term any more; suffice it to say that all of the residents were people with both intellectual and physical disabilities), we had a chart in the shared bathroom in which we had to record daily poo production in cups. Don’t get me wrong – we didn’t use cups, but we had to look at what each person produced and imagine how many cups it might equal.

As a nurse and/or care-giver, you get so used to poo that cleaning it up becomes more of a tedious than a revolting job. At least now there are plastic gloves and pull-up adult nappies which makes things a lot easier on the carer and the sufferer.

I don’t want to personalize this into an Anthony-and-Julie situation here; I just want to speak generally in a way that kind of (hopefully) demystifies this particular type of incontinence and makes it easier to cope with.

The first time it happens it is, of course, humiliating and ghastly for the poo-victim and quite frightening for the carer. Above all, do NOT make the person feel worse than they already do. The next thing you need to do is to remain extremely calm and pragmatic. Just do what you have to do as quickly as possible and try to remember your 5-year-old poo jokes. The ability to hold your breath, and the invention of room deodorizer, are good additions to the situation.

My point: being able to use your bowels means you are still a living, breathing, eating, functioning person, so pooing is a very good thing. So rejoice in the poo! Don’t be afraid of it! It is normal!

It can also be a great conversation starter: “Remember the time when you ….?” Raucous laughter may sometimes accompany these conversations, which is a hell of a lot better than misery.

Just saying…. it might be you one day.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Mar 16

Tomorrow is always waiting for you.

by jmgoyder

Today was pretty awful and was made worse by a mother/son argument that escalated into recriminations, guilt, and ‘walk away’ tactics. To some extent, this worked but Ming and I were still so miserable – he in his shed and me in the house. So we began texting each other and have now established that I am the boss and he is the slave and he has even called me ‘Commander’; this is a good move.

Oh the joy of tomorrow! Of course tomorrow brings a fair few uncertainties but it mostly brings the excitement of anticipation, adventure and something new and fresh … and a new Ming, a new me and, maybe, a new Anthony!

Tomorrow is a gift.

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

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Mar 16

Guilt

by jmgoyder

I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.

blogging Grief Happiness LOVE STORY Parkinson's disease

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