jmgoyder

wings and things

Nightmares

I had a dream last night that someone I knew (it wasn’t clear in the dream who exactly he was), took me to a holiday house somewhere near the sea. It was a really shabby old house and I felt a bit reluctant to go in but I did anyway because I didn’t want to hurt his feelings. Then, once I was inside, the door shut with a clang, and I knew immediately that I was doomed because a hanging rope was already in place for me and the someone-I-knew became a cackling stranger who was going to hurt me before killing me. The terror I felt within that dream woke me up, and I entered the day in a daze of perspiring relief that it was just a nightmare.

Have I read too many books, seen too many movies, thought too many thoughts, felt too many emotions? Yes, probably, but this was the most frightening nightmare I have ever had. Of course this nightmare is not hard to interpret at all I guess – a bunch of mixed emotions following trauma; ongoing anxiety for all those affected by trauma; shame, guilt and embarrassment over the stupid things I’ve said and done since the trauma; and a momentary wish that I would die.

The nightmare has made me see much better what it must be like for Anthony when he experiences the night terrors and and hallucinations of his PDD. If I can experience such a vivid nightmare whilst being physically healthy, and wake up with my face covered in the sweat of terror, then what is he going through?

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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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Parkinson’s disease dementia and night terrors

I have just gotten off the phone with Anthony for the third time in the last half hour. He is terrified and this is happening more and more often at around the same time of night. Tonight he thinks several people are trying to tie him up, that his house is being rummaged and wrecked, and that I am part of a conspiracy to hurt him. Ming and I have both talked to him and I have also rung the nurse in charge to tell her how distressed he is and that he is confused. She said they had tried to put him to bed (sometimes it takes two or three people) but he fought them all off. I told her he didn’t know what was going on and that we were seeing the doctor tomorrow to get emergency medication for this kind of hallucinatory agitation.

Our farm is a half hour drive away and I feel like I should sell up and buy a unit near the nursing lodge so I can be closer for these night terrors because for him to be this frightened is unbearable for all of us. I know/hope that in the short time it has taken to write this post, he will most probably be in bed and nearly asleep because in the end Ming and I managed to calm him down a bit – very hard to do over the phone.

The prolonged emotional agony of this disease, for all three of us, is like treading water in a strange and unfamiliarly large pool of murky water, and can change within the space of an hour. Earlier, when I rang Ants, he was fine and lucid and gorgeous. His words don’t come out very well any more so I was shocked by tonight’s frantic eloquence and his absolute terror. My feelings of helplessness are like jagged jigsaw pieces accidentally placed in the wrong box – futilely useless.

I love him so much.

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Peacock poop

Peacock poop is a bit unsightly when it is found on the top of your newly washed car, your outside veranda, or underneath your innocent shoe(s), but, once it dries, it is easy to sweep away with the leaves. Gutsy9 can ruin the immaculate neatness of this farm and house (ha!) by coming into the kitchen, flying up onto the table and eating whatever is on the table while I hang up the washing outside. Yesterday, she came into the veranda and purred (yes purred!) to Anthony until he stroked her little head. And then she pooped.

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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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