wings and things

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.


Embarrassing moments 2

A few weeks ago I had to get help from a computer technician, a surveyor, and a telecommunications antenna installer for various jobs. All three of them had the name Chris, a name I really like, but a name that I will, from now on, always associate with confusion.

Once Antenna Chris had attached my no-longer-mobile phone to a dock to an antenna placed on our roof, I was relieved to once more have a working telephone (since the land-line had worn out, literally). So when Surveyor Chris (who I hadn’t yet met) rang me not long after Antenna Chris had gone home, I raved on about how wonderful he was and thanked him profusely until I realized I was talking into a strange silence. Thinking I had another phone problem, I said, “Chris? Are you there?” and Surveyor Chris said, rather hesitantly, “Yes, but I think you think I am someone else?”

An hour or so later the phone rang and it was Computer Chris to see if he could come over the next day to finish up. Once again, I thought it was Antenna Chris who had left the antenna cord dangling until I tested it out and he had planned to tidy this up by attaching the cord to the wall with a bit of plaster. So I said that would be great and raved on about how wonderful he was and thanked him profusely until he interrupted me by saying, “I don’t know anything about the antenna – I want to finish up work on your laptop.”

Just for the record, I do not have a crush on Antenna Chris; it’s just that I think he is every other Chris.

Surveyor Chris is yet to ring me back.


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.



What is the difference between “dementia” and “Alzheimer’s disease”?

Vic's Final Journey

The heartbreaking description of a person with Alzheimer’s disease illustrates what a precious thing we have in the gift of memory. Memory gives us a past and enables us to plan for a future. We enjoy routines in our daily cycle and retrace our steps. Without memory, all we have is the present – no more. Everybody is a stranger. Calendars don’t make sense. Even mirrors are confusing, because there is somebody else here in the room.

Ecclesiastes 12:1 suggests that we should remember our Creator when we are young, because days of trouble will come. The implication is that we will forget even our God. Declining mental abilities are well-known symptoms of increasing age. In 1906 Dr. Alois Alzheimer, a German physician, did a brain autopsy on one of his elderly patients who had died after years of severe memory problems. He was surprised to find tangled nerve cells…

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Embarrassing moments 1

When you bump into someone whose name you’ve forgotten and, in order to cover this up, you say, “How do you pronounce your name again?” and they say “Bob”, or “Sue”.



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.



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.



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.


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.


Not posting for awhile

Things have happened in the last 24 hours – a car accident, but everyone is going to be okay. I won’t be posting or reading blogs for awhile.