jmgoyder

wings and things

Parkinson’s disease and unpredictability

One of the worst things about Parkinson’s disease, especially in its final stages, is that no matter how diligent you, and other carers, and the sufferer, are with the timing of the medications (which is vital), what works well one day might not work the next day, or hour, or minute.

When I arranged for Anthony to be taxied to and from a restaurant the other day, in a wheelchair taxi, it was a great success except about an hour too long. He became exhausted.

Today I arranged for Anthony to be taxied to and from the farm but made sure it was less hours than the previous time. So he arrived at 11.30am and he and Ming sat out the front in the sunshine and it was great hearing them chat. Then I served a lunch of scrambled eggs (Anthony’s favourite except for fish mornay!) Then he got too hot in the sun so I got him back into the wheelchair and pushed it into the shade.

By this time (about an hour into the visit) Anthony had become very slumped and silent and our conversation was limited to my chatter with little response; he just wasn’t ‘with it’ and looked awful, you know, really sick. So, I rang the taxi people and asked for the wheelchair taxi to come earlier, then I rang the nursing lodge to tell them and that was fine.

Well, as soon as I had done that, he came good (‘come good’ is an Australianism for rallying I think). He got off the wheelchair and used his walking stick to shuffle around the garden a bit, went to the loo without needing much help and walked outside the front again, sat down and was suddenly in the mood for conversation. By this time it was around 2pm and I was wishing I hadn’t asked the taxi to come early because Ants would have lasted until the original time of 3pm

So when the taxi arrived, Anthony said, “Not already?” and looked so crestfallen that I could hardly bear it and kept saying to him, as I was wheelchairing him to the taxi, “I’m sorry – I’m sorry, you were all slumped – how was I supposed to know you would suddenly come good?”

After Ming I and I waved him off, I cried for my bad timing and Ming said, “When will you learn, Mum? It’s not your fault.”

By now, Ants will be back at the nursing lodge. And, until I get the taxi vouchers next Monday, this ‘genius’ taxi idea has so far cost over $200 and what for? The sadness far exceeded the joy today. Arghh!

Oh yeah, and the stupid geese didn’t do any frolicking while Anthony was here, and I didn’t get the roses pruned and I just tried to ring Ants and his phone is off again. On the other hand, weather-wise, it has been an extraordinarily beautiful sunny day, the phone hasn’t rung (I am not phoney), and Ming just went off to milk the cows happily.

But my main point is that the unpredictability of Parkinson’s disease can do your head in – whether you are the sufferer or the carer – and it is, therefore extremely difficult to ‘go with the flow’. I know I’ve posted the photo below before; this is Anthony nearly two years ago. He doesn’t look like this any more.

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Faux pas (how do you say that in the plural?)

Sometimes I say things and the words come out in a way I hadn’t intented:

  • Like the time a very sophisticated woman came to visit and when she called out “You hoo” from the back door I was on the loo and I yelled out “Just a minute – I was just having a sit” meaning that I was reading a magazine. Unfortunately, she misheard “sit”.
  • Like the time I rang for an appointment with my chiropractor brother and said to the new receptionist, “I’m his brother” (I am a female).
  • Like the numerous times I have called Anthony “Mother” and my mother “Ants” (and I do the same thing with Ming and Anthony all the time!)
  • Like the time I recorded a telephone message on my work phone that ended with me saying “Seeya!” and was reprimanded for sounding unprofessional (I used to get that a lot).

Anyway sometimes the same thing happens with blogging. For example when I first started this blog and I was pressing this button and that button and any button, trying to figure it all out, I accidentally reblogged someone and, when I realized, I immediately trashed it. I have no idea who this was, but now that I am a more seasoned blogger I realize how hurtful and mysterious it would be to be reblogged and trashed in the space of a few minutes!

Then yesterday, when I reblogged a post and then wrote another post to explain why I felt BB’s post and the children’s cause were important, I said a few things about reblogging which may have been misinterpreted because I didn’t express them very well, so I will just add here that (a) I love being reblogged – don’t mind it a bit and find it flattering; (b) I don’t mind reading reblogs at all but often don’t have time; (c) I don’t particularly like to reblog others’ words because I like to write my own.

So I do hope I haven’t made a blogging faux pas as bad as the reblogging+trashing incident. And if you happen to be the person I unwittingly did this to, I apologize and promise to be your brother for life!

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A hesitant activist

Earlier today I reblogged a post written by Lady Barefoot Baroness who many may be familiar with. She and her friend have combined their talents, and a shared passion for child safety, to create a new blog, the details of which will be announced soon.  Here is the link to more information:

http://cobbies69.wordpress.com/2012/07/25/will-you-join-us/

Now, as I’ve said to Baroness, I don’t like reblogging because I often don’t read reblogs due to time constraints and I don’t think I am alone here. For newcomers to blogging, reblogging is when you read a post on someone else’s blog and you want to share it on your own blog, so you click ‘reblog’ which is what I did today. It is worth keeping in mind, however, that some bloggers do not want to be reblogged so it is important to ask their permission first. (I hope that is clearer than mud!)

My own passion for this cause is difficult for me to describe because the thought of any child being hurt appals and disturbs me, and I have a longstanding aversion to news items about child abductions and disappearances because, as I am a parent, I cannot imagine a worse horror.

Reblogging and linking my own readers into this cause has scared the hell out of me because I am a bit of a wimp in this way and certainly am no activist. However, if my reblog of Baroness’ most recent post and the link above can possible help find a lost child then it’s worthwhile – absolutely.

I will not reblog in the future; instead I will figure out how to put the message out there on my own blog. Please go to both of the aforementioned blogs to get more information and many thanks!

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Flower power

Anthony was/is crazy about flowers and we have dozens of rose trees and camellia trees and all sorts of other flowering things in the garden. The trouble is (a) he isn’t home anymore and he’s the one who tended to all of these gardening shenanigans; and (b) I loathe gardening.

Don’t get me wrong – I love gardens and flowers and trees and all of that, but I just wish they didn’t need so much help. The camellias are my favourites because they just thrive anyway, but the roses – oh the roses!

My beautiful friend, CB, has come over several times in order to teach me/help me to prune the roses and we have made a bit of headway but only because she does most of the work while I drink my coffee or struggle to find the stupid secater/scissor things (see, I can’t even spell the secatooooor word!) Nevertheless, she is very patient with my procrastinating ways.

Since I now really want to grow sunflowers, I realize that I must first prove to CB that I can prune those bloody roses and prove to her that I am a newly-fledged gardener. So tomorrow, or maybe the day after tomorrow, I am going to do it – yes! I have to do this before she comes over and sees that I haven’t done it.

I plan to invite her over on Friday afternoon to see the pruned roses and to get sunflower advice because she knows all about this gardening thing. That is one of the many reasons I adore her.

Here are a few pictures of the camellias that do not need anything except the occasional glance of appreciation!

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Moments of pure joy

  • When you ring the electricity people to pay the phenomenal bill and the guy says you are in credit by over $700
  • When you take one of the pillows that your blogging friend from Turkey has given you, and you put it behind your husband’s back in the nursing lodge, and he sighs with pleasure
  • When your oldest niece, who is getting married soon at a castle in Scotland, emails you asking if you would write something for the wedding because she knows you can’t come over
  • When you finish all the blasted paperworky, redtapey, billy, taxy crap
  • When your friend comes over with a fold-up massage table and says she is going to give you a massage and you say you would rather be dead, and she doesn’t mind and gives your son the massage instead
  • When the damaged wing mirror on your car that was going to cost over $1,000 is fixed in 15 minutes by your friend
  • When one of the nurses looking after your husband says she read the thank you note you wrote to the staff, and loved it
  • When someone  you haven’t seen for decades finds you on facebook
  • When you finally finish the folding but still can’t find the iron
  • When, in a cupboard, you discover the gorgeous Italian boots your husband bought you years ago in a fit of extravagance, and you put them on your feet for the first time
  • When your son is angry that you have run out of cereal again and you calmly show him the 10 packets of weetbix in the pantry
  • When you realize that you don’t ever want to find the iron anyway
  • When one of your dogs snuggles happily into your armpit
  • When your son takes over all of the outside jobs but doesn’t tell you off for being behind with the inside jobs
  • When you find a new makeup to obliterate the circles under your eyes
  • When you laugh more times than you cry
  • When you remember something beautiful
  • When you think about planting sunflowers
  • When you see comments from bloggers who you may never meet but with whom you are now connected
  • When you find the gifts you got weeks ago but forgot to give your little, newly christened nephew and niece
  • When you look at the sunset
  • When you find out that the house isn’t riddled with white ants after all
  • When you rediscover prayer in a feather – or two

And all of that joy happened in just 24 hours!

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How are you?

‘How are you?’ has become, in whatever language, an almost universal way of saying ‘hello.’

Nobody ever wants the ‘how are you?’ recipient to say anything beyond, ‘I am fine, thank you and how are you?’

Sometimes I forget about this ‘How are you? I am fine’ etiquette and I either respond to ‘how are you?’ with a novel-length tale of woe, sprinkled with some joy (or vice versa) – or, even worse, I interrogate the howareyouer by probing how they really are. Neither of these two alternatives have proved satisfactory because, inevitably, I either give or receive that thing that is sometimes labelled ‘foot in the mouth’.

‘How are you?’ has become a statement of niceness, a verbal gesture of care; it is not a question requiring an answer because it is sort of rhetorical – it is just a form of greeting and, as such, it is lovely.

Just imagine if we really, honestly answered that lovely question, ‘how are you?’ like this:

  • I’m tired and I don’t want to talk to you
  • My life sucks
  • I don’t know
  • I’m envious of your perfect life
  • I’m bloody sad
  • Anthony is deteriorating
  • I am on the brink of poverty and wondering if humans can eat grass and leaves
  • How the hell do you think I am?
  • I am hating the world today
  • I am crap

So, you see, you can’t answer the lovely question in those ways because you would seem rude, ungrateful, self-indulgent etc. and the poor howareyouer would never ask you again!

‘How are you? is a bit like ‘What are you doing today?’ because the latter is a question that expects you to be doing either something or nothing, but it mostly wants you to be doing nothing so that the asker of the question can help you do something. So you either have to say ‘I am … ‘ and try to remember your schedule for the day, or you have to be really honest and say, “I am sitting down and I plan to sit down for much of the day, so I don’t want my sitting down interrupted.”

But you can’t say that to the really busy people who care enough to ask you how you are and what you are doing so you say things like, ‘I am about to embroider the paddock with sunflowers’ or else just say you have lots of appointments (but you don’t divulge that most of your appointments are with the chair you are sitting in because you really love the chair and are a bit frightened to get off the chair today.)

How are you?

What are you doing today?

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I am a genius!

Today’s plan was to meet a bunch of great friends at a brewery up the road. Amazingly, I actually organized it, sort of – like a girls’s get-together thing. I wanted to prove to these beautiful friends that I am, indeed, capable of getting out of the house AND that I adore them.

There were a few glitches to the plan including the fact that after yesterday’s guilt episode I had promised Anthony to pick him up and bring him along. Long story short, I realized I couldn’t meet my friends and pick up Ants at the same time (it’s around a 25km trip to nursing home and back), so I did some detective work. First,  I rang the taxi service and asked if they had a wheelchair taxi; second, I rang the nursing lodge and asked if this would be okay; and third, I rang Ants (who answered the phone!) to say he was getting taxied.

When the wheelchair taxi came to pick Ants up from the brewery, the driver told me how to get really cheap taxi vouchers, and, since I’d already been told this by someone else this morning, I wanted to whoop with the joy of how much easier this kind of arrangement will be for me – not back-breaking etc. – I am elated!

It’s such a wonderful thing to be a genius!

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I sent my mother a saddish email and this is what I got in return!

For Julie. 2012.

Where to begin.

You are a symbol of all that is beautiful in my life.

I can’t remember my own infancy, but I remember yours, every detail, every freckle, every asthma attack, every giggle. I remember getting the news that I was pregnant with you, and telling absolutely everyone including the man in the ticket office when I bought a train ticket to Sydney that day.

I remember the newsagent’s surprise when I was on the way to give birth to you, and Dad stopped so I could buy a Readers Digest to read during the confinement, absolutely sure it would be a breeze. The elevator man on the way up to the labour ward commented with a smile, that he had never seen such a cheerful expectant mum. And the moment when you were placed in my arms. Unforgettable. Grandma and Grandpa were in Melbourne which nearly killed Grandma…. and me.

I remember decorating your room in Canada, for one of your birthdays. I remember the tiny little flared skirts and rope petticoats I made you when you could just toddle. I remember Percy, the wooden penguin, and your delight pushing him on the stick in front of you. I remember the excitement of driving over to Dee Why to show you off to Grandma and Grandpa so often. I remember the pushcart and you all dolled up in a knitted outfit I’d made, and getting you on to the train from Birrong, to once more show you off to the staff at MLC, who must have groaned when they saw me coming once again, to show how you’d grown, at least a week from the last visit.

I remember you with Daniel and Kalainu in PNG the baby on your hip, like a third arm. And the love shining in the eyes of those beloved New Guineans, Tulia and the rest…such love and adoration.

I remember your tears and the agony of leaving PNG in that tiny plane. You never got over that, nor did we, watching your pain.

I remember the look of love and concern when I opened my eyes to find you bending over me after my mastectomy.

I remember you playing your guitar and singing at Brin and Julie’s wedding, with your heart breaking because Anthony had let you down and didn’t come.

I remember you flying way over the rope marker for the high jump at Ukarumpa. I remember the basket ball against the PNGers on the top court at twilight….Dad and me watching.

I remember Dad, standing at the pulpit at St Matthews, with you, a tiny dot up to his knees, walking up to take his hand in front of the congregation. I remember Dad proudly saying you were a chip off the old block, after a conversation with you by phone from that awful Bible College.

I will never forget your face when you arrived in Perth airport after he died.

I remember Nanna’s face when you used to run into her house to visit. I remember you playing with all the dogs and cats we’ve owned throughout your life. I remember the tearful phone call to my school the day you found your precious pregnant cat, dead outside the house and asking could the kittens be saved, and the agony of the distance away that I was and how powerless I was to comfort you.

I remember your radiant beauty, set off by the sheen in the gorgeous blue of your outfit at your wedding. I see the look of total undying love that Anthony gave to you as he placed the ring on your finger. I remember the label still hanging off the sleeve of my wedding outfit at the church and I remember buying it in a shop, near where I was having some sort of nuclear cancer test soon after you were engaged.

I remember tiny Rohan and Jared all spruced up and full of importance on your wedding day, and your brothers so proud.

I remember the way you mothered baby Brin, and held this great fat child on your own little knees, and later even more motherly when a second little brother arrived. You never seemed to mind the attention they got.

I have a drawer full of your cards and letters telling me how much you love me. I have a drawer full of your amazing writings and a heart full of pride and wonder at your giftedness.

I remember sitting in the car with you when we pulled over to talk deeply about God, after a church meeting and how insistent you were that you understood it all.

I remember how literally you took some of the things your Sunday School teacher taught you and giving out tracts at service stations and how negative that whole part of your life was. But I remember your faith and Len and Betty Evans and the way they loved you.

I remember knocking on the door of the doctor in Ukarumpa when you were having a terrible asthma attack, and being afraid to wake him up.

I remember the patience of a small girl, sitting on a rock by a lake in Canada, as you coached a tiny chipmunk onto your hand. Later, I remember your skidoo taking off at high speed, with us watching helpless with laughter from inside the cabin, as Fred Brown tried to catch you and tell you to stop squeezing the accelerator. And was it you laughing when I did the same thing with your scooter, in Boyanup?

I remember when Mark gave you that little motor scooter. I see the way Mark’s face still softens every time he asks after you.

I see the way the whole room lights up when you arrive to family dinners and last time, I relished the sounds of laughter and love coming from the dining room as I played with the younger kids in my bedroom.

I love the way you love Ashtyn.

I remember Dad and me watching the three of you skating in Toronto, and the time a man skated up behind you and scooped you up to skate a few metres with you high in the air.

I remember how freezing the walk back to the apartment was afterwards, and how you cried with the pain of your defrosting fingers.

I remember how bewildered you were when you three burst into the apartment, identical to ours, but on the sixth floor of the wrong apartment block, in Toronto.

I remember the apple pies in Boyanup and how my stove was permanently welded with the overflowing apple sauce.

I remember the 10k ride at early light, day after day, to look after Gar.

I remember the phone call from UWA saying please could you come home, and Dad saying unequivocally, “Yes.”

I remember the poem you wrote to be read at Dad’s funeral, and the pain. Oh the pain.

I remember how homesick you were when you went to stay at Melodie Brown’s. I remember the shock of the news just after we left PNG, that Ruth had been killed on that motor bike. I remember you and Dad going away for Christmas at Yapeta’s village that year and how strange it was for all of us.

I remember Yapeta never wanting to turn the shower off when Harland brought the three PNGers to stay with us in Toronto. I remember Mandalia stopping in his tracks the first time you yelled a greeting in Wiru, from the front window of our house in Ukarumpa, and how amazed the missionaries were when you spoke more fluently in Pigin, than they did after all their years and years there.

I loved every moment of your young motherhood years. The zillions of photos you took of Ming, and the full blown motherhooding that swept over you, after never touching another person’s baby in your adult life…..or since. The almost unearthly knowledge of this child who had been promised to you even before you and Anthony were married.

The way you “wifed” Anthony and changed nothing in his home or lifestyle. A person so content, who needed nothing more than to be with her man and make his life seamless in transition, except for the wild surge of joy and the total texture of the life changing love you brought to him.

I love the transformation of the farm into an exotic bird paradise.

I love the way you give Ming absolute freedom to be himself. I love the no strings way you’ve brought him up.

I love your blog. Your honesty, your willingness to let us in. And most of all your sense of humour that colours absolutely everything you do and say, and yes, the guffaw, that has become your trademark.

I remember Dr  Dan Hugo saying you were a “real” doctor, when you got you PhD and how I wanted to trumpet the news to the world, while you left plain “Julie Goyder” on your office door for years, not bothering with the Dr.I love that you are free of materialism, when I’m so opposite. You have bucketloads of empathy in its place, but that’s a huge burden for you. I love the way everyone loves you and wants to be your friend, but you’re so happy with your own company.

I love you boot fetish.

When you write the dialogue between the birds, I love the way they talk about you, the human.

You are so refreshing.

I hated the months when you would only eat apples or have a glass of water in a coffee shop.

Do you remember standing on Dad’s feet and walking with him step by step on his big shoes when you were 2?

Do you remember the ominous silence when Dad would threaten to pull the car over when the three of you wouldn’t stop fighting in the back seat on our long Canadian trips?

Do you remember yelling “Turn off the wipers, Dad”, when he always forgot?

Do you remember Grandma shrieking with delight as you all tobogganed down the ravine in Bexhill Road?

Do you remember Grandpa laughing till the tears came, recounting the smell of the skunk as it drifted over them, upstairs at Bexhill?

And Grandpa giving us the red car when they left to come back to Australia.

What about Macdonald’s every Saturday after cleaning Islington Evangel Centre. The wonderful freedom to order whatever you liked as payment for helping Dad every week.

The horror of the “air hostess” uniform you were forced to wear at the Grammar School and that awful day when you fell over a laddered your stocking and bled all over the place.

What about the shock hearing Ming’s name suddenly read out at that same school about 35 years later, when he got the Principal’s Award. Uncanny.

I loved all those Sundays at the farm when you reluctantly played table games with Ming and me, with Anthony watching benignly on. And what about the hilarity of “Black Books”, Sunday after Sunday.

Do you remember telling Auntie Myra off for her grammar, or things like throwing the clothes onto the basket…”Don’t throw them, Auntie Myra….PUT them,” and the number of times you quoted the Bible at me, as a 4 year old.

I know you thought my singing in the car all the way to and from the North Shore every day, that year you went to Abbotsleigh, was hard to take. I remember you saying frantically, “Don’t kiss. Don’t kiss!” as I leant over to open the car door when I picked you up after school when you were seven.

I don’t like remembering the way you had to drag poor, little tearful Mark to pre school in Canada, after I’d left for work each day. Or those bullies who knocked you off your bike. I hate how hard some of your childhood was.

What a reader you were. You could read C.S.Lewis when you were so very young. The world of imagination was your friend and enemy.

Do you remember going into the woods with Dad to get a Christmas tree some years?

I remember how you saved up to buy me presents when you were so young.

You wrote the most beautiful letter to “Unkool Mik”, when he lost his legs from diabetes. I have never read anything so heart wrenching.

I love it that you call Brin Yelsnirb.

And that my daughters-in-law are mad about you.

And all my grandchildren.

And their partners.

In fact all my friends.

Surely you must feel the love. M xx

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A sunshiny soul

This lovely woman, niasunset, who I only know via blogging, has sent me the most incredible gift of four cushion covers that she hand made. I admired her cushion covers when she photographed them in a previous post and asked if I could purchase a couple – one for me here at home and one for Anthony in the nursing lodge. But nia wouldn’t let me pay and wanted to make and give them to me and yesterday, when I went to our post office, there was the parcel!

It took me ages to unwrap it because it was wrapped several times over and then I opened the last layer and gasped with delight:

I am not very good at arranging things artistically but I did try with this photo. Nia is the artist as you can see if you check out http://photographyofnia.com/about/

Thank you so much, niasunset, for your niasunshine!!!

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Please don’t feel guilty

Anthony’s most frequent visitors at the nursing lodge are:

  • me
  • my mother
  • his oldest friend
  • two lovely men who used to work here
  • one of our neighbours
  • his boarding school buddy
  • a few of his nephews
  • volunteers
  • Ming

But there are many friends and family who don’t visit him. To begin with I wanted to beg people to visit him, then I realized that was an unfair request and people are busy and have their own problems and stuff.

I have also begun to realize that it is a bit scary for some to venture into a nursing home to visit someone who has changed so much, who no longer seems familiar. Another reason people don’t visit is because it is just plain boring sometimes; even for me, and this is a terrible thing to admit, visiting Anthony is often like an obligation, a job, rather than something I look forward to with joy.

I have now figured out how to get our home phone number transferred to Anthony’s room in the nursing lodge, so in a day or so he will have both the problematic mobile phone and a ‘normal’ phone. I am hoping that this will enable people to ring him more easily. The mobile, despite being one of those big ones, with big numbers, is becoming too difficult for Anthony to figure out. He doesn’t hold it to his ear properly; he doesn’t seem to be able to charge it when it’s flat; he keeps fiddling with it and sometimes accidentally locks it etc. etc. so the ‘normal’ phone will hopefully be easier.

Hopefully.

But that wasn’t the point of this post – this post is to reassure people that (a) it isn’t that scary to visit him; and (b) if you can’t cope, that is fine too, and please don’t feel guilty because Anthony would hate that.

I imagine this is a situation that many people find themselves in, in one way or another.

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