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Thursday, 28 April 2016

Book review: Before I Forget, Christine Bryden (2015)

Prior to her diagnosis of early-onset dementia in 1995 at age 46 Christine Bryden lived with an abusive husband for almost 20 years. The dementia advocate has written two other books, which have been published. In this one she tells the story of her life from her childhood until recent times, although the part here that is most coherent is the part up to when she was first diagnosed.

The part of this book that is most compelling is the part that deals with her bad first marriage. You read the book chapter by chapter hoping that the person whose life is being chronicled will stand up to the bully she lives with, say "enough", and get out. And you have this feeling many times as the story proceeds, while the relationship continues its inexorable and brutal course. It is terrible to behold. I don't think I have read another account of an abusive relationship like this anywhere else. Finally, the character called Christine gets the help she needs to get out, but it seems to take forever for this to happen.

Bryden is unusual as a person living with dementia because she has had the diagnosis for so long. In fact, early-onset dementia generally - I am assured by my psychiatrist - is more severe than the more normal type of dementia that comes with old age. Having had the diagnosis for over 20 years, she has to some degree bucked the trend. Continuing to interact meaningfully in society as an active participant sets her apart; most people with dementia end up in nursing homes as they cannot perform the normal tasks required to live in the broader community. Of course Bryden is fortunate in having a husband - Paul, who she meets after leaving her first husband - who helps her in many ways to navigate the world's obstacles. But looking at the subject from a broad perspective you'd have to say that Bryden is not typical in her class.

Regardless, she has a lot of interesting things to teach us. Because my mother has dementia, I bought this book - having heard about it on the radio (I listen to the radio in the car when I drive up to visit mum in the nursing home) - hoping it would give me insights into the disease. As my mother's carer, I have a duty of care to be informed. I also bought the book for mum but it's impossible to know if she has read any of it because of course she forgets what she has done.

Reading the book has been useful because it allows me to understand some of the feelings a person living with dementia feels in their lives. So I can better understand my mother and hopefully care for her with more aplomb. The fact that Bryden does not fit the mold is in the end irrelevant. The universe had to create someone like her in order that a person living with dementia could express themselves in the way she has done, with passion and accuracy. I regard her insights as informative and relevant.

Sunday, 24 April 2016

Can't we fast-forward to the election?

I don't know about you, but election night is one of the best nights of the year for TV. It's got all the right ingredients: characters you know; a suspenseful, unknown ending; and plenty of action. And numbers. (Lots of numbers.) At the end you get a victory speech that will be sampled and replayed on the news for days and days. The whole country is watching. It's well and truly on.

Then there are the democracy sangas, the sausage sizzles. Right there where you are bound by law to be on this day of all days in the year, the folks behind the barbies are doling out yummy hot sausages wrapped in fresh, white bread. With tomato sauce on top for spice.

What's not to like? Well, there's the campaign season, for a start. In fact, they haven't even declared that there will be an election, let alone whether it will take place on 2 July. Here we are, red-hot raring to go and ready to mosey on down to get our democracy sausages and to do our democratic duty and the politicians are still faffing about with the grizzly details. It's so annoying. Why can't they take into account the needs of the entertainment-hungry populace for once?

The next just-on-two months are going to be crushingly slow for many people in the community, people who have already made up their minds - like probably the majority of people in the electorate - about who they will vote for. In the interim they have to listen to the politicians banging on, making promises that turn out to be disappointments about dental health, tax reform, education funding, disability funding and the rest. The long hello, they should call it. This endless wait for a day we can already sense in our nervous system like a bottle of top-order chardonnay sitting on the shelf in the cupboard. A day full of promises of high-calorie foods and hours of top-rating TV. A day to remember.

Friday, 22 April 2016

Book review: The Road to Ruin, Niki Savva (2016)

It takes some suspension of disbelief, for a political progressive like me, to read a highly detailed account of a conservative leader's downfall, but I did it. Savva talked at great length, and no doubt on multiple occasions, to a large number of people in the process of writing this book. It has authority and gravitas. Never mind the fact that a lot of the people interviewed for the book are lying jackasses in real life, people I wouldn't give the time of day to. I think in the end that the problem for me was the gaping void between the assumed point of departure of the writer and the point of view of the reader consuming the book.

But regardless you still get a good look at the problems that beset the Abbott government apparently from its very beginnings. One of the main ones was that all decisions seemed to emanate from a small group of select people in the leader's office, including his chief-of-staff. The type of collegial consultation that members of Parliament are apparently used to in a Westminster democracy were thrown out the door. A tiny clique was doing everything to control the message, but when the leader's popularity failed to turn around people outside that group turned on the leader and replaced him just like that.

I should be grateful that the most disgusting, abhorrent and downright putrefacent of the Liberals were those on the ideological right who stuck by Abbott through thick and thin. So Savva didn't talk to many of the really sick-making people such as Eric Abetz and Peter Dutton. For small mercies we should all be thankful. I hardly need the time before I go to bed to find itself populated by the spectres of such ghouls as these.

It's clear that Savva - who as a conservative commentator had made remarks about the Abbott government in public on numerous occasions before this book appeared - didn't like Abbott. I suppose I should like Savva. But when she says that a particular MP "shines" in their role (when I think they're just a lying turd) it's a bit hard to take the author seriously. The bigger problem, furthermore, of governments that lose office after just one term is a thing that Savva does not tackle at all. She's a conservative, after all, and can hardly be expected to use her imagination. But this phenomenon of one-term governments is something that the commentariat will have to one day really take a close, hard look at. So far noone has really made the attempt. I think it has something to do with the new public sphere in the age of social media. But a lot of people would despise me for even suggesting something like this.

Having said these things, it's quite fun to see a lying, specious, callow fellow like Abbott get his comeuppance. He fell far and he fell heavily. He regrets the move made to get rid of him. What we do find however in the book is that he had a lot of opportunities to make the changes that might have saved him and he missed all of them. He had noone to blame for his removal but himself, as Savva points out on more than one occasion.

Thursday, 21 April 2016

All alone in the deserted park today

When mum and I went up to the park outside the nursing home there was noone there. There was noone walking. There were no people with their dogs. There were no other old people out to sit in the sun. It was just mum and I, alone. I made up a song to commemorate the occasion but I promptly forgot the song when I got home, had lunch and had a nap.

But what the deserted landscape reminded me of is that mum and I are in this alone together. In the end it comes down to the two of us, even though we might on most of my visits to the nursing home get in touch with my brother in Texas on the iPad. All of the important decisions in mum's life from now until she passes from this life will be decided by the two of us. We are tied to one another with indissoluble bonds of trust. We are closer than most people will ever be with anyone else in their lives, with the exception of their spouses and their children.

I was reminded of such things again this afternoon when I was bringing mum back inside after our walk to the park. In the elevator again was the wife of the first of the incapacitated men mum had started showing affection for. He was the one mum was kissing on the head. Today his wife was wearing a red dress. I think his daughter was there to visit him as well, today. There were two cups on a table in the TV room where his wife was doing something, and one was labelled "daughter" and the other one "wife". This poor woman has no idea that mum had been kissing her husband on the head each day as she (mum) walked through the TV room on the way to lunch or to go for a walk. Poor woman! I can only be glad that she never became aware of it. Or maybe she did. It's entirely possible that the gentleman in question told her the whole story - including my involvement - on one occasion or another when mum and I were walking down the hallway. You never know.

But I will never find out because the last thing I would want to do is risk disturbing the peace of this woman, whose only fault has been to visit her husband in his nursing home.

Generally, mum is in good health these days. Her haematologist is happy with her progress. The last time we visited him he did not change her medication. So with everything stable on that front, we can be a little bit secure that things will proceed in fair balance for the immediate future. Of course winter is coming and with it infections and flus. I have put mum's name down for the annual flu shot, so we'll see how things pan out on that front.

Saturday, 16 April 2016

Mum expressing intimacy with a male resident again

On previous occasions I've written about mum's awkward interactions with one of the other residents of the nursing home, but it seems she hasn't learned. When I suggested we go for a walk outside today she came after me down the passage. As I was waiting in the passage I realised she must've stopped to interact with one of the other residents, because she was taking so much time. So I went back down the passage to the TV room and there she was holding hands with an elderly man in a reclining chair.

I have seen this man on many occasions and he does elicit a measure of pity in the viewer. He is completely incapacitated in the region of his legs and spends all of his time during the day in his chair, often watching TV but equally as often located in the corner of the dining room, where his wife comes to look after him at mealtimes. "Come on, mum," I said and beckoned with my hand. Mum extricated her hands from the man's - he was bringing them to his mouth to kiss them - and started walking down through the TV room again. I got her to the elevator but once outside where we were alone I remonstrated with her, reminding her of what had happened before when she had started kissing the other resident on the head, the previous time. Mum looked at me with a look of shock on her face, as if to say, "You've got it all wrong." "But mum," I said to her, "people get confused when you display affection to them in the way you do. They think you mean something else. They can't distinguish your meaning from the other common meaning." "Alright," mum said when I had finished talking.

We went down to the park and I turned around once more as we were proceeding to remind her of what I was saying; she does take things in if they are presented with enough force, as the other resident's petticoats comment had been, when I had relayed it to her in February. Again this time, she had that blank, shocked look on her face, as if she were hearing bad news.

Then when we were coming back into the nursing home a strange thing happened. From outside I could see the elderly woman approaching the nursing home from the taxi she had got out of. She came up the path, walking with some difficulty, and entered the nursing home precincts through the same gate we had taken. She came through the front doors immediately after us and preceded us to the elevator. While she was waiting for the lift to come, mum and I arrived and waited also. Upstairs, I signed mum back in into the excursion book and turned to take mum back down to her room. In the TV room I saw the woman who had preceded us into the lift fussing around the man who had made the petticoats comment, all those months ago. It was his wife. No wonder he didn't want mum kissing him on the head any more!

Tuesday, 12 April 2016

Clive Palmer looking like used goods

Last night's 4 Corners program on the ABC on Clive Palmer was pretty exhaustive and seemed to fill in some of the colour we all need from our own watching of the news in the public sphere. We don't always get such a comprehensive view of any given subject in such a small space, as we do in an hour-long current affairs program on the public broadcaster. What it meant for Palmer himself it's hard to know. I haven't heard anything today from his direction giving any indication of his feelings about it.

What the general media consumer might have taken away from the program is a feeling that Palmer has very quickly - since the 2013 election - exhausted a lot of political capital. He has made enemies with pretty much everyone he's had to deal with, from his Chinese business partners to the MPs he accompanied into Parliament in 2013, from his Queensland Nickel employees to the Queensland Liberal National Party. Everyone who has had extensive dealings with Clive Palmer seems to have a bad opinion about him.

You can see where all this is going. If he runs for Fairfax - his Queensland federal seat, which he won in 2013 with the slimest of margins - he'll likely lose. Yep, he's annoyed his constituents just like he's annoyed everyone else he's had dealings with. He might be able to field another cohort of MPs to run in the Senate and in individual seats around the country - as he so successfully did in 2013 - but you find it hard to believe that he could run the same game twice, having lost so signally the first time; most of his senators jumped ship and have sat as independents since doing so.

And then you have the ABC with its meddling journalists asking difficult questions. Hard to see how Palmer can recover intact from this type of shellacking. I predict he'll lose Fairfax if he stands again, and he'll only get one or two MPs into Parliament this year when the election comes around, which should be within the next three months.

Monday, 11 April 2016

The government is looking vulnerable all of a sudden

It's been about a week since things started looking very shaky for the government. In my eyes it started last Monday night when Q and A host Tony Jones interrupted the program to announce that the ALP had overtaken the Coalition in a Newspoll opnion poll by a 2PP margin of 51 to 49. There was a brief silence in the Adelaide auditorium as the numbers sank in with the audience.

Since then things have gone slightly awry. Indicative of the new purchase the ALP has with the electorate is the way their suggestion for a royal commission on banks has hung around. The idea won't die, even though Turnbull and his Liberal frontbenchers keep saying that ASIC can do the same job as a royal commission and anyway has the same powers as a royal commission. The Panama Papers story - which came out last week, again on Monday, on 4 Corners - has made such a big impression on the imaginations of voters. People just cannot seem to forget those notions of billions of dollars of taxable income being sequestered in financial havens, all the while they themselves are paying PAYG each week or each quarter as they are meant to do.

Turnbull has looked a bit shaky also on the issue of tax reform, which most recently came down to a decision by the states as to whether they would be allowed to raise part of income tax themselves. Turnbull floated the idea, it was rejected resoundingly by the states, and the idea disappeared. That was the week before last. Christopher Pyne, the industry minister, summed up the way the issue had been handled when he said from that Q and A panel - which he participated in on Monday night - that it had been a bit of a mess. Not that I personally fault Turnbull on this account. I felt it was handled in a reasonable way. But that wasn't the look for the majority of the public. For them, it looked bad.

Then we had the case of the helicopter crisis that had engulfed Abbott's government reemerging when it came out that Barnaby Joyce - the deputy leader of the Coalition - had used a helicopter for a short flight that could have been covered in a 45-minute drive.

Each of these things in themselves is hardly terminal but in aggregate they add up to a weakened government that cannot seem to get its issues through to the electorate, hence the stubborn way the ALP's royal commission idea has hung around like a bad smell. Liberal MPs must be hoping that the media will forget about Bill Shorten's idea as soon as possible. As long as the idea remains talked about, the government won't have and clear air for exposing its own ideas. And that will be very bad for them. It's less than three months until the election.

Sunday, 10 April 2016

Mum got a black eye

It was tomorrow a week ago or thereabouts that mum got a black eye. She has no recollection as to how it occurred. I had seen mum in the morning and then later in the afternoon the nursing staff at the first floor of the nursing home called me to tell me about it. It is a complete mystery, but then with mum's blood disease - a low platelet count due to myelodysplastic syndrome - it doesn't take much to cause this kind of bruising.

I had to take mum to the haematologist as it happened, on Tuesday last week, and at the time he said it was quite possible that the bruising could happen spontaneously. Other than the black eye, mum has been in good spirits these days. She is generally well-disposed toward the universe and has a positive attitude. "I don't mind living out the rest of my days here until I cark it," she will say to me with some light-heartedness. It might sound macarbre but older people tend to talk in these terms. When you get to a certain stage in your life and things start not working properly for no forseeable reason, every day can appear to be some kind of a miracle.

I haven't been writing on the blog this week mainly because of an irrational anxiety that people in the nursing home might have blamed me for causing the black eye. It makes no sense, I know, but with the disease I have I tend to get a bit paranoid about various things - and there's no accounting for it most of the time - for no apparent reason. It hasn't been a great week for me, what with the tooth extraction on the Wednesday of the week before. The tooth cavity has stopped complaining by the way, so that particular problem seems to have sorted itself out nicely. I am now able to clean my teeth almost normally. I still have to be a bit ginger about the back-left bottom quarter, but it's improving day-by-day.

Sunday, 3 April 2016

Dreaming about kite kayaks

This - if you can believe it - is a kite kayak. I had a dream last night about a kite kayak, a thing I had never heard of before looking it up online today. In the dream two of these contraptions approached where I was standing on a grassy shore. The first one was crewed by an elderly lady and the second one, which came a short distance after the first, was crewed by her daughter. The elderly lady wanted me to help her. I got her kayak to the shore and then things got a bit complex for I don't remember what happened next.

Later, I was standing on a Laser - which was the type of boat I sailed in real life for many years as a teenager - and it was propped up on a concrete foreshore. I had the idea that the craft would fare better if it was tethered to the foreshore, rather than propped up on it. I walked up the Laser's deck as it got steeper and steeper until I couldn't walk any more. Then I was standing on the foreshore looking down on the craft as it sat bobbing gently in the water. The boat was now tethered to the foreshore by a rope.

At times like these in dreams you might wake up to the call of nature, or because your mobile phone is ringing. I didn't wake up but these dreams in my memory just seemed to fade out into ragged ends that find no easy conclusion, so that's all I'll be able to convey for the moment.

I don't know why I dreamt about kite kayaks. When I lived on the Coast I often saw kite surfers in the ocean along the long beaches they have up there. The beaches face east. The kite surfer shop was down in Cotton Tree near the fish-and-chip shop and the laundry. I would walk down to get lunch there on occasion. In fact I loved to eat their flathead; crispy, thin strips of fish deep fried in bread crumbs. Their chips were also good. A fish-and-chip lunch for me was something of a treat. On other days I would eat a prepared roll or sandwich from the deli cafe, or a tub of salad. I never saw any kite kayaks on the Coast.

When I was a teenager I found a kayak in a council-cleanup bin and brought it home. It was made of wood with canvas stretched over the frame. Initially I took the kayak out with the paddle from my father's Hobie Cat. It was a one-ended paddle. Eventually I made myself a proper kayak paddle out of wood, and varnished it. I took that kayak all around the harbour, into lonely coves and around deserted foreshores. It's a wonder I survived with the thing. I kept it standing upright when not in use propped against a pine tree in the bottom garden, which gave onto the beach.

Friday, 1 April 2016

Visiting mum the day after a tooth extraction

This is mum in the park yesterday. I was going to go up to visit her at the nursing home on Wednesday but on that day I had to go to the dentist, and they took out a tooth. It was a molar that was a wisdom tooth that had no upper partner, so it wasn't doing much and was hard to clean. The dentist had advised me on an earlier occasion that it was her opinion that the tooth should be removed. So when it became infected a few days ago I had to make an appointment.

The removal was extremely painful and the pain that arose once the anaesthetic had worn off on Wednesday afternoon and evening was tremendous. The dentist had asked me not to drink on the first day after the extraction, so I had no recourse to alcohol to dull the pain. I was so exhausted on Wednesday night that I went to bed at 7.30pm and slept fitfully through the night until I finally got out of bed on Thursday morning at 9.30am. By this time the pain had significantly subsided. I decided to go up to see mum and I put on the new leather shoes that I had bought on Tuesday.

Mum was asleep on her bed with no socks on when I arrived and I got her to put some on because I was planning to take advantage of the fine weather and take her out to the park. I went over to the table by the window and dialled up my brother but he was unable to speak for very long due to the emergence of a conflicting priority at his end. He had been called to eat dinner. Mum and I rang off just before the tea cart appeared, so we had a cup of coffee before heading out into the sunshine.

Outside we went up to the corner and crossed the street, walked past the putrefying rabbit (I don't know why the council haven't picked up this scrap of mortality yet, it has been there for weeks and weeks), and headed to the second bench. A number of other elderly people from the nursing home were out walking with two of the staff; they made their base a bit further down, toward the sports pavilion.

As we were sitting there on the bench a woman and a younger man came up with a male dog that looked like a greyhound, although it was slightly smaller. The woman said it was a greyhound-whippet cross. The woman and the man had been training the dog to obey orders until they decided to take a circuit of the park. They started talking to us as they came by where we were sitting. The woman had a parka held over her head "because of the sun", she said. We discussed nursing homes, and the woman said that her father had been in a nursing home before he had passed away. Her mother, who was some years younger than her father had been, was soon to be considering whether to go into care. I recommended she try the nursing home mum lives in, because of the excellent service they provide.

The woman left after a while and mum and I continued to sit in the sun until it became time to think about lunch. We got up from the bench and joined the others from the nursing home, who were also making their way back inside, as they walked down the footpath. Back inside, I placed mum at a table in the dining room then took her outside gear back to her room and put it away. Then I said goodbye to her and left. On the way down toward the motorway I stopped off and bought some petrol and a sandwich and drink. I ate my lunch in the car while driving.