jmgoyder

wings and things

From heart to heart: The Dr. Says

I have made many friends in the blogosphere, one of whom is Sandra Callahan. She is wise and funny and positive and she and I share some very similar experiences. We have supported each other through many ups and downs and yesterday she made a comment on my post that compelled me to rethink yesterday’s doctor’s appointment with Anthony during which he described his dreadful terror the night before as ‘a bit of fun’. Sandra said, ‘He must have been embarrassed by his behavior. I cannot imagine how scary it must be when he doesn’t recognize people and they are trying to force him to do things he doesn’t understand.’

Sandra’s comment made me realize that Anthony’s bravado with the doctor was to cover his embarrassment and, even though I was aware of this at the time, it didn’t really hit me until I read Sandra’s wise words. Of course he was embarrassed – to be confused, to have been terrified of nurses, to have possibly made a fool of himself, and to have worried me so much. Anthony’s ‘bit of fun’ was his way of covering up his embarrassment and I understand that much better today than I did yesterday thanks to Sandra. She has once again helped to sharpen my sense of perception with her amazing empathy.

Our hearts have a lot in common except for one fundamental thing: mine is still beating loud and clear and Sandra’s is failing. She has congestive heart failure and is dying. But she is also living to the utmost, encouraging people like me and talking honestly about dying. Her book is now available and here is the link.

From my heart to your heart, Sandra.

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“I’m so much better, Jules!”

Today I picked Anthony up from the nursing lodge to take him for a doctor’s appointment to get some of his never-ending skin cancers burned off with that ice stuff. Having been a farmer all his life, out in the full sun before the days of hats and sunscreen, he develops many of these on an almost daily basis – new eruptions from old sun damage – on his arms, face and back mainly. Even though it hurts, Anthony has a strange liking for the procedure, mainly because he really likes seeing our doctor and so do I.

In the car on the way to the doctor’s office I asked him did he remember what had happened last night and he surprised me by saying yes.

Me: Well I think we should tell the doctor because this seems to be happening more often and you sounded so terrified.
Anthony: I didn’t want to be ordered around.
Me: So you fought the staff, told me I was part of a conspiracy against you, thought you were being tied up, and frightened the hell out of me.
Anthony: They deserved it.
Me: But they were just trying to put you to bed! Was anyone being nasty or pushy?
Anthony: Not really.
Me: So why did you fight them?
Anthony: Oh, just for a bit of fun.

AAARGH!

Before I go on, I should explain that this kind of conversation flows much more smoothly on the page than it does in real time. In real time, there are a lot of pauses and sometimes Anthony’s voice is so soft now that I have to say, “what?” or “say that again?” before I understand what he is saying.

Anyway, his ‘bit of fun’ comment made me laugh, until I became a bit cross.

Me: So you think it’s funny to torment the nurses and make me cry for worrying about you.
Anthony: The first thing yes but not to you. (He reaches out and pats my knee as we pull into the doctor’s parking lot)
Me: Well I’m going to ask the doctor to prescribe you with something for when this happens again.
Anthony: So you want to drug me.
Me: Nooooo! I just don’t want you to have one of these terrified episodes again with nothing to calm you down. Even I take something like that now and then!
Anthony: Yes, but you probably need it.

He has a point there!

When we went into the doctor’s office, he already had his ice-spray thingy in his hand like a weapon (a little joke he and Anthony share), but I told him that our visit was two-fold and then described last night’s incident, including Anthony as much as I could, despite his point of view being different from mine. He, too, thought it was funny when Anthony said it was all a bit of fun and Anthony’s eyes did that rare twinkly thing and he nearly smiled.

A new medication was prescribed, several skin cancers burned off and we left feeling as if we’d been on a social visit. By that time it was early afternoon, so I suggested we eat at a restaurant but Anthony wanted MacDonalds (most unusual!) So we got burgers from a drive-through, went to a park and ate them in the car (much easier than getting Ants in and out of a restaurant), then went to a bakery and bought a fancy tart which he vacuumed up, and a big chocolate cake for the nurses. By the time we got back to the nursing lodge, he was exhausted.

Okay it is now nearing the time I usually ring Anthony to say goodnight. The new pill won’t be available until tomorrow so we may well have a repeat of last night’s situation but this time I will be ready and I won’t let either of us be disarmed. I have to be prepared for the worsening of Anthony’s condition even though every single morning he says to me, “I’m so much better, Jules.”

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Kindness

I have just watched the 6th episode of Ricky Gervais’ Derek, and am struck mostly by the way it portrays a nursing home environment and the kindness of carers (rather idealized, nevertheless nearly real). It broke my heart to watch this because, as many of you know, my husband, Anthony, is now in a nursing home; but it also made me laugh because I can relate to many of the antics. I think this is a series that all who work in nursing homes should watch because it re-humanizes the people they are caring for. My gratitude to Wattle Hill Lodge staff for caring for my husband is something that leaps into my mind and heart every morning when I wake up without him here at home.

The kindness expressed, via gifts from friends to the children, facebook messages and blog support, to my family – my mother, brothers, sister-in-laws and to all of the children injured in the car accident two weeks ago, including my niece’s best friend (the niece still in hospital) – are so appreciated.

One of my brothers and his beautiful wife are all home now with their three injured-but-recovering children. K (11-yr-old nephew with the broken femur) is excited that his best friend has broken his arm in a trampoline mishap – well, not excited but you know what I mean. M (K’s twin) took her broken fingers and toe to a disco last night, still wearing her neckbrace! And T (also still in neckbrace) continues to stand tall and to support all of us with her amazing attitude and grace.

My other brother and his beautiful wife are in a more tenuous situation as they await their daughter, S’s spinal brace to be fitted so she can get out of that hospital bed. I know/pray she will make a full recovery long-term but at the moment it’s all very emotional and anxious for all of us.

The moments of absolute fury that this happened have been alleviated by the kindness expressed to all of us. Thanks to all. And thanks, Ricky Gervais, for a different perspective on the act of kindness.

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Opalescence

To my niece still in hospital:

Your name means wisdom.

As you wait, flat on your back, for healing, for the spinal brace to be fitted, for whatever comes next,
I have stopped eating garlic because I want to breathe out to you without stinking, even though we are 200 kilometres apart.

You have my freckles but you wear them like jewels. At your age, my freckles looked more like I forgot to wash my face after mud-wrestling. They’ve faded now but I hope yours never fade.

On your 14th birthday, the other day, when that grumpy woman wheeled your bed into the party room of the hospital, and told us off for lighting candles on your doughnut cake, I wanted to punch her in the face.

You told me to stop inboxing you so I did once I realised I had sent you 27 messages. Sorry about that, but I can’t seem to stop!

A celebrity kissed you on the cheek, your mother is a rock, your father is a mountaineer and you are, like your birthstone, a pure, shining opal.

Your nickname for me is AJ because I hate being called Auntie Julie. I love you for that.

I haven’t prayed for years but now I do – praying you will be okay, praying you will get the patience you need for the next months, praying for another private giggle, praying for every single tomorrow to be better than every single today.

Keep on opalescing, keep on being strong, keep on being you. You.

AJ

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The dangers of driving on gravel

It is nearly two weeks since the night of the accident in which my son was driving with four of his cousins and one friend in the back tray of his ute/truck. My family has learned so much from this, including the extent to which we love and respect each other. Responsibility for allowing the kids to go for a little ride has been shared and discussed, hugs have been exchanged, forgiveness has been a constant source of comfort to all I hope, but self-forgiveness is not so easy – not for me.

Even though I was the only one inside the house and didn’t know that my son had taken off with the kids for a second little ride, I should have already had a rule in place that this was absolutely forbidden. After all, it is against the law to have unrestrained passengers in the back tray of a ute. If I had had this rule in place, this wouldn’t have happened. Why didn’t I have this rule? Because it never occurred to me that my son would do this; he is such a cautious driver and has the reputation of driving like a granny! When they all came back from the first little ride and I realized they had been off the farm, I said to my son, “don’t do that again will you” but I should have said, “YOU WILL NOT DO THAT AGAIN!” If I had said that, this would never had happened. We are all struggling with our own ifonlys, but these two are mine.

What matters here is that, despite all five children sustaining serious fractures, with one still in hospital for some time, the longterm prognosis for all is full recovery, physically. Psychologically and emotionally, I think their recovery may be more complicated but as the young are so resilent, I hope and I pray that they will all unremember the terror of that night. For those in my family, who drove crazily around the outskirts of this country town, after my son’s panicked phonecall, looking for all of them, when they were only 2 kms away, the memories of our fear and horror will take longer to fade.

My son did a slow U-turn on bitumen, and was heading home again when he hit gravel and accelerated a bit, turning the steering wheel from left to right, just slightly, to give the kids a little thrill, and that is when he lost control and the ute fishtailed (I think); he tried to control it by braking, and steering it back, but nothing worked even though he was going less than 40kms.

If he had been speeding, hooning, drinking or a reckless person, this could have been worse. If he had coerced the children and snuck away for a little joyride, against our wishes, this could have been worse. The fact that everyone survived, and will recover, is the thing I tell myself each morning when I wake up to the horror of that night on constant replay.

When driving on gravel, be aware that your tyres only have half the grip they would on bitumen.
When driving on gravel, do not accelerate suddenly, even a little bit.
When driving on gravel, do not brake suddenly, even a little bit.
When driving on gravel, always go very slowly.

Nobody in this family – my beautiful family – will ever hop into the back of a ute again. Nobody in this family – my beautiful family – will drive without caution on gravel roads from now on.

My heart leaps with joy that everyone will be okay longterm, but his post is primarily to warn people of the dangers of driving on gravel, especially in a ute, and to never, ever, let your children get into the tray, no matter how much they want to, no matter how short the ride.

I am so sorry.

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Never take anyone for a ride in the back of a ute/truck – please.

If only….

Last week we were having a bit of a family reunion. My brother and two of his children had come over from Honiara to celebrate the birth of his first grandchild. My other brother, wife, and three children were going to stay with us overnight on their way to Perth the following day for their children’s basketball commitments – all three are high-level athletes. My mother was glowing with the pleasure of our family together because we all live at various geographical distances.

It was a lovely evening and we were all sitting out on the front veranda eating and drinking and enjoying being together. Ming took the kids for a little joyride on the back of his ute (truck) and all came back exhilarated and wanting more. When I realized he had taken them off the farm, I said not to do this again and all was well. I heard him being asked to go again and I heard him say no.

When I received Ming’s frantic phonecall a bit later I was confused because I thought he was in his shed at the back of our farm, entertaining his cousins and a friend. I had been inside the house doing some foody stuff when he took off again for another joyride with the kids in the back; I didn’t even know he’d gone again. He had lost control on gravel 2 kms away and smashed into a tree.

Before continuing with this difficult post, all of the children are now out of hospital except one niece who needs to be fitted with a skull to hip brace. Her best friend is out with a broken arm and my brother’s three basketballers are also out of hospital with healing fractures. All children will be okay longterm, with my niece, who has to have the brace for 3 months, most affected/injured and my heart aches for her.

But they are all alive, they are all alive, they are all alive. I am trying to counter my dread that night with this mantra that they are all alive and will recover and my futile thoughts of if only, if only, if only… and whatiftheyhadbeenkilled? are useless thoughts.

They are alive and will all recover. I think this is the most beautiful sentence I have ever written.

I have the most wonderful family with both brothers and families (even the magnificent children who were injured) sharing the responsibility of okaying Ming to take kids for that second joyride. We are all forgiving each other, and all blaming ourselves instead of each other. The next step will be to forgive ourselves. Ming has been hugged and reassured and forgiven by all family but he will be charged and go to court and he wants very much to be punished because he loves those kids so much.

A very hard lesson for all of us and a horrifying week, but we will recover in time and our closeness as a family is intact. Please, if you are a prayer, send prayers to all of the children but especially my niece still in hospital.

I won’t be posting again, or reading blogs, for some time. My main message here is in the title.

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A perfect arrangement

Ming offered to pick Anthony up on Monday and bring him home for the day, then take him back to the nursing lodge in the late afternoon. I can’t believe how much this improved the day for me! It was so wonderful not having to make the two trips, each of which takes around an hour if you count the time it takes to get Anthony in and out of the car and then back into his room at the lodge. It was also great fun for Anthony to have his big son driving him around and Ming got to spend time with Ants on his own during the trips to and fro.

When I take Anthony back to the nursing lodge he often gets really unhappy and sentimental, and saying goodbye for the evening is sometimes a bit tearful for both of us. But with Ming, this doesn’t happen so that is a real bonus. This arrangement was also great because, having done the two trips with Anthony, Ming didn’t feel he had to spend every minute of the day with him. This can be a bit of a strain for Ming, especially when Anthony isn’t making any sense or doesn’t speak at all.

Anthony and I spent most of the morning in the kitchen while I made chicken and vegetable soup for our lunch. Then he wandered around the farm (wonderful!) until he became too wobbly. Back in the kitchen he watched me make a blue cake while we caught an old episode of Midsomer Murders on the television. The cake wasn’t quite cooked when it came time for Ming to take Anthony back so I surprised him with it on his return. As you can see, he was nonplussed.

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Ming said he will drive Anthony back and forth whenever he can. This is a perfect arrangement.

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The way to a man’s heart?

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Ming’s Sunday breakfast: I spread half an avocado on two pieces of wholemeal toast, then cooked eight bacon rashers, two sausages, three eggs and one tomato. It took me around 10 minutes to prepare. It took Ming exactly four minutes to consume.

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I took Anthony out to the Dome this afternoon where he demolished an enormous piece of chocolate mousse cake with extra cream. I sipped my coffee and watched in amazement.

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After taking Ants back to the nursing lodge and settling him into his room, I came home to find Ming sitting in the living room hungry. I am not sure if he has forgotten where the kitchen is, or forgotten how to open the refrigerator which generally has food in it, but he appears to have some sort of mental block when it comes to feeding himself. So I gave him his requested snack of strawberries and cream with some reluctance. He ate it unreluctantly.

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The Australia puddle and other Spring things

The puddle in our driveway has held the shape of Australia for weeks and weeks and even had a Tasmania, but the latter evaporated a couple of days ago, before I remembered to take a photo. I wish I had, as it might have made me famous! I’ve decided not to get that Australia-shaped pot-hole filled with gravel now, in the hope that next Spring it will once again rain relentlessly and re-create the Australia puddle, with Tasmania, on our driveway. Then I will take lots of photos and have an exhibition and get rich. The reason I didn’t take the photos this time was because it was raining and I didn’t want to get drenched to photograph a puddle (I think that is more for the professionals.)

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A blue wren (very hard to photograph because they are so tiny and so fast!) After several attempts to get him in more natural surroundings, he landed on one of Anthony’s salvaged washing machine insides, that we use for an outside barbecue.
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A rare vision of Uluru looking calm. He is usually feisty, having to compete for the wheat with all the winged creatures.
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G9 in a tree. I have never seen him her do this before (even though I know that, at sundown, she flies up into the wattle trees for the night with all the other peafowl).
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Ming, with the dogs.
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Something wonderful happened today; I became a great-auntie for the first time. A beautiful baby was born and I mean this sincerely because, let’s face it, most babies are quite ugly for the first few days/hours – but not this one! She is exquisite! In respect of the new parents’ privacy, I will ask them before putting any photos of the kid on my blog.

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There is no such thing as wireless!

Such fun! The new modem suddenly stopped working today, and the old modem suddenly started working, except for when it needs little smokos, which is every few minutes. Hence, this a very quick post to say that my midnight visitor turned out to be a genuine neighbour’s son, looking for a genuinely lost dog but I’m still not sure why this had to be after midnight.

I received a reply from the Australian Journal of Dementia Care to say that they would be delighted for me to submit articles – yay! Coincidentally, they had featured something about my long-ago-published book about Alzheimer’s disease in their last issue – serendipity is so weird.

Anthony home all day today with sun shining. He actually chopped a bit of wood and walked around the farm without his walker, until he nearly collapsed from exhaustion. I was worried he might fall but then thought what the hell, he needs some autonomy back, so I just continued doing the washing/folding, feeding animals etc. but I found this difficult because I remember the falls before the nursing home (he doesn’t).

When it came time to take him back to the nursing lodge, there were a few mutual tears. I am feeling terribly sad writing this and internet is probably gonna die in a minute. If so, just know I’m doing my best to keep up with posts etc. but sometimes it all gets too hard.

Now I just have to go and plug in the wireless phone, new modem, Ipad etc. and all will be well – yeah right!

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