Monday, 27 June 2016

Mum goes into palliative care

So today brings the sad news that mum is being placed into palliative care. In the morning I spoke with my cousin who had brought my attention to mum's AHD, after mum had been moved overnight to the Cardiac Care Unit from Ward 7. Then I came back to the hospital this afternoon after Clare had returned to the road for the trip north and I spoke with mum's attending doctor. I had also earlier spoken with another doctor - who goes around to different units to help out where needed - and he had spoken to me about mum's AHD. (He was the same doctor who had spoken to me once before in the Emergency Ward about the AHD, and had advised me to think about what it contains.)

Mum's attending doctor examined her records and came to her room to have a look at her. He tried to get her attention but was not successful. We went outside the room to talk. There were two young doctors also standing there on their training rounds. The attending doctor told me that mum was getting worse. Her heart rate had gone up to around 140 bpm and she was struggling. Even when, two days earlier, she had looked well and was responsive, she was not mobile. Her likelihood of recovery was poor and even if she did beat the infections - in the right leg and in her bladder - and get out of the hospital she would likely be readmitted shortly due to the MRSA infection in her right leg.

He asked me if he could put mum into palliative care instead of putting her through more uncomfortable procedures, and I agreed. He said "Ok" and asked me if I was alright. I said I had been looking after mum for seven years and had seen the degeneration of her health over the previous months and years. I went back into mum's room and said goodbye. The doctor came in and turned off the heart monitor and a little while later a nurse came and disconnected mum from the machines. The room was suddenly less active. It was almost quiet except for occasional footfalls in the hallway outside the room where mum lay alone apart from me, sitting there in the chair in the corner. Mum lay there with her mouth open. A nurse came in to put cream on mum's lips to prevent them cracking and causing pain. I stayed for a while then I left and drove home.

Sunday, 26 June 2016

Mum is a bit delirious

When G and I arrived in the ward today we could hear mum talking out loud - obviously disturbing the other occupants of her room - and the word that was most obvious in her monologue was "rabbits". She didn't make much sense. It was clear that she was delirious and that therefore she had slipped back a bit compared to yesterday. Yesterday she was talking normally and making perfect sense. Today she was ranting deliriously.

There was no wall between what she wanted to say and what emerged from her mouth. She would react to the slightest snippet of conversation overheard from a nearby bed. She would react with disdain to the suggestion of a mouthful of food. She would yell when the doctor picked up her arm to examine the skin on it. She was just voicing all her feelings without any barrier between the inception of the feeling and the final word that emerged. It was just not the way she normally is. It was the infection talking.

We tried to get her to eat something but without much success. We had more luck with the coffee - a flat white - which I had bought at the kiosk outside the hospital's front door. They make decent coffees there so I don't blame mum for not eating the chicken breast and pumpkin and mashed potato that the kitchen had prepared (I tried some and had no trouble eating it but it wasn't exactly cordon-bleu).

After the visiting hours had ended we left and came back home, then walked up the street to have some Vietnamese food for lunch. I had a chicken pho and G had summer rolls. Tomorrow G goes back home to the Coast.

Saturday, 25 June 2016

Mum feeling better in hospital ward

G and I went up to see mum this morning in the hospital and she was awake and talking to herself when we arrived. She speaks slightly awkwardly - the jaw doesn't seem to move unimpeded at the moment - but at least she can make herself understood. She was amenable to humour and we had a bit of a laugh as the nurses came in and out, connecting a bag of antibiotics to the cannula in her hand. There was a vitamin supplement to dissolve in water and drink as well, which we accomplished during lunchtime. The cleaner came by and mopped under the bed.

So it looks as though the difficult time of mum's recent illness has finally disappeared, which is a relief. It took a bit longer than usual to go - four days - but she is now sitting in bed with open eyes listening to what is going on around her. That's a long way from where she was even yesterday, let alone on Wednesday when she finally was admitted to the hospital. At that time her health was very touch-and-go. Now she just looks like she's just waiting for the nod from the doctor to let her leave to go back to the nursing home.

About the future, I spoke last night with mum's GP. He called while we were in the restaurant having dinner. He told me that the periods between illnesses was getting too short - ten days in hospital giving you two weeks of free time in the nursing home - and that he would prepare a letter for the nursing home staff for next time mum gets sick. Which will be soon enough, there's no doubt. When it happens the GP will be recommending nothing more than palliative care in the nursing home. This means - sadly - that mum's days are numbered.

She has done well however. Back in November 2014 when she first got the diagnosis for the myelodysplastic syndrome the haematologist gave her a prognosis of only six months. She did a lot better than that, it's clear, and has kept herself together for a bit over 18 months now. She has had a good trot overall but it's going to be time soon to put aside the tubes and the drips and let nature take its course. I'm only glad it's not my decision in that case.

Thursday, 23 June 2016

Mum is in hospital ward again

Yesterday I picked up mum's old housekeeper G from the airport. We went up to the hospital in the late afternoon - a bad time for the traffic - and saw mum but she wasn't really talking much. She was mumbling sort of incoherently and could barely answer you when you spoke to her. Today she was a bit more compos mentis and even opened her eyes at one point.

She has a bad infection and the doctors in the ward are still uncertain how she will go. It's a bit touch and go at the moment, frankly. G and I spent an hour with her this morning. We gave her half a bottle of water to drink - in a cup through a straw - and offered her some cake which we found in a packet on the tray near her bed. But she refused the cake. She looks very frail still although she is talking more than she did yesterday. We will go up again to see her tomorrow.

If anyone wants to visit mum in Ryde Hospital she is in Ward 7 out the back of the main entrance and up the ramp. She can respond to words quite well although her replies might be a bit confused. She has been very sick indeed, so you have to be a bit patient with her. Cake might not be eaten, not sure.

Tuesday, 21 June 2016

Just a quick trip up to see mum

I quickly dropped in to see mum at the nursing home today because the nurses there told me that she wasn't taking the antibiotics the hospital had given them to give to her. The antibiotics are oral type, and when I saw her with her head on her pillow, breathing deeply through her mouth, I understood the situation immediately. She is almost completely incommunicado. I talked with the RN, who told me they had been trying to get onto the GP but that since he had moved his practice, they had difficulty contacting him.

I only stayed for a little while. Mum was washed while I was there and during this procedure she uttered incomprehensible sounds that gave you the impression of displeasure. She didn't like being towel-washed. The nurses are doing for her as much as they can but it is difficult for them. They also told me they would be getting in touch with an after-hours doctor at 4pm. I called the nursing home a little while ago but they just put me on hold. They were obviously busy on the first floor with dinner. Then I called later and confirmed they would be installing a spray to keep mum's mouth moist while she is in her current state.

Tomorrow G - mum's old housekeeper - is coming to Sydney to visit. I had asked her to come down earlier. Originally she was to come down from the Coast on Friday. When I pick her up from the domestic terminal we'll go up to the nursing home on the motorway.

Monday, 20 June 2016

Another hospital visit for mum

When I got up to the nursing home to visit mum today she was like she looks in this photo: quite incommunicado. Not hearing, not responding to words. We called the ambulance. I popped downstairs to have a word with the deputy director of the nursing home. She heard me out as usual. I got from her the message that mum is getting close to the end. I went back upstairs to wait for the paramedics to arrive, and when they did I talked to them to answer their questions, then went outside with them and drove to the hospital.

I sat in the emergency area waiting room for about 45 minutes then snuck outside to the kiosk and bought a sandwich and a drink for lunch. I was hungry and the simple food they serve there was exactly what I craved. I went back in the emergency waiting room and went to the desk to ask if it was ok to go inside, and if the doctors inside had asked to talk with me.

They let me in. The nurse at the desk told me to put on a plastic apron before going into mum's enclosed room. (She is quite toxic because of the MRSA in her leg.) I sat there with the white apron over my outdoors jacket feeling a bit odd, like a cook without a stove, and talked to mum gently while she lay there. Occasionally she would say something like "My legs are cold" and I would get a new blanket for her. Mainly though she just lay there breathing with the heart machine beeping away happily.

I spoke to the young female doctor. She brought me a copy of the AHD which the nursing home had included with mum's things to go with her in the ambulance. We talked about it. Especially the part where it says that in the case of a terminal illness she is not to be given antibiotics. I told the doctor that my inclination was to give her vancomycin but that if the hospital said otherwise I wouldn't complain. Then when the doctor had left to get back to her work I called the nursing home and asked to speak to the deputy director.

The nurse I was speaking to talked to me gently and told me that I could choose for mum, but that she understood it was a terrible responsibility. She said it was an awful thing to have to decide; whether someone lived or died. But she said she understood if I wanted to end things because the vancomycin - although it is a strong antibiotic - was only a "band aid" (the exact word she used). If we gave it to mum today then in two weeks' time she could be again on her way to the hospital in an ambulance.

Then she said I had done everything possible for my mother. I had been a good son. And this made me weep. The idea that I could have got this right - this caring for mum in these awkward days I had not prepared for - made me break down and shed hot tears. I tore off the apron and headed outside to the emergency nurse's desk, and said I had to go home. The nurse however followed me out into the hallway and asked if I was ok. I told him that I thought that it was pointless to keep treating mum because she was just going to get sick again, and that we should respect the words in the AHD that mum had herself signed off on two years earlier. I told him through the tears that I had been looking after mum for seven years now. And that now I was tired of the constant worry and anxiety the sickness instilled in everyone around her.

I went out to the car and stopped off at the servo on the way home to refuel and buy a sandwich. When I got home I opened a bottle of wine and poured myself a glass. Never had wine tasted so good. I was so exhausted by the neverending worry about mum and her leg. Later, after I had eaten some dinner, the nursing home called me to tell me that mum had returned, but that she wasn't able to take the oral antibiotics the hospital had sent along with her. I called the hospital to confirm what to do and they called the nursing home. The nursing home called me back a while later and we had another conversation, the nurse and I. But I feel as though my mother is already calling from beyond the grave.

Thursday, 16 June 2016

Walk to the park with mum

In this photo taken on our way to the park mum looks happy enough but it was hard going for her, especially once we hit the grass on the way to the second bench. Mum might be grinning in the photo but she was soon muttering under her breath and groaning with the exertion required. We took about 15 minutes to get to the second bench, and then we sat there for about 25 minutes. We left not because mum was getting cold but because of the lunch to be served, and because of the time it would take to get back inside the nursing home.

On the way back to the nursing home, as we were going down the footpath alongside it, mum ran out of puff completely and I sat her down on the walker. I guided her down the footpath to the gate, then opened it and pushed the loaded walker inside. Then I went up to the entrance and found a wheelchair in a cupboard on the ground floor. I brought it outside and put mum in it, then took her inside and upstairs to the lunch area. I sat her down at a table and went to put away her outside clothes - jacket, scarf, cap and sunglasses - then put away the wheelchair downstairs and went outside to get mum's walker, which I had left near the side gate.

Mum is very frail. Actually, this will probably turn out to be her last unaided walk outside to the park. In future I will be taking her out - but from now on in the wheelchair. Getting to the bench and getting back inside is just a bit too much effort - for her, now - and so it is going to have to be me pushing mum around in a wheelchair from now on. It's just too risky for her. A fall outside at this point would be awful. I can't contemplate how unpromising it would be for her to fall when we are in the park.

But regardless, she is still going. Her right leg - the one that has given her so many problems in the past two months or so - has stayed inert. It is not inflamed and sore. So for the moment things are under control and we can hope that she will keep going indefinitely. Nevertheless it is only realistic to anticipate that the infection will return at some point in the future. The question is when. How long will there be between hospitalisations - when she will receive treatment using vancomycin (pretty much the last antibiotic that works on her)? How long will she have in the nursing home in the interim?

A couple of days ago I spoke with the nursing home's deputy director about these issues. Things that I had already spoken with mum's GP about. We agreed that we would treat mum again next time she needed hospitalisation, and then take it from there. It is the frequency of admission to hospital that is key. How much time does she get that has real quality of life in it, between stints in the hospital? We'll be looking at this as we go down the track.

Tuesday, 14 June 2016

Negative gearing is good policy

I completed a voting intentions survey from the SMH yesterday which showed that my place on the political spectrum was closest to the Greens. I thought this was a bit funny since I'm planning to vote LNP on 2 July, and I said so in the Facebook post. But a person I know asked how it could be possible for me to vote conservative, and so I explained. He wasn't very impressed to put it mildly.

But as George Megalogenis, the journalist, has written in his recent book, immigration is the underpinning of Australia's economic strength. We've been taking in a couple of hundred thousand immigrants annually since the 1950s, which is why Australia is one of the strongest economies in the world. These people all need somewhere to live, and rental accommodation will be the solution for the great majority, at least in the beginning of their residence here. Cheap rents are important therefore, otherwise we fail all these people. So we need negative gearing to help maintain the supply of new properties. The "oversupply" of new constructions of late is for example just the result of three years of strong home price growth, and if you take away the incentive to build the supply will dry up and rents will rise commensurately.

We also need to support the tens of thousands of honest mums and dads who buy investment properties to ensure a secure future for themselves in their retirement. Not only do we help the government minimise the cost of the aged pension on the Commonwealth purse, we also make it easier for individuals to have a better quality of life, and more cash to spend in their twilight years.

It always bothers me when young people who want to live in tony suburbs like Stanmore and Newtown complain about the cost of housing. I want to tell them to look further afield, where there is plenty of housing for reasonable prices. But they will have their lifestyle no matter the cost to the public more generally. The debate on negative gearing has been going on for some time so this is not my first blogpost on the subject, but I hope that it will be the last. I predict a win to Mal with a margin of 5% in July, so the debate will hopefully finally be put to bed at that time.

Sunday, 12 June 2016

Mum's bruised hands

This is how mum's hands looked after her recent hospitalisation. In fact, they've improved in this photo since she was first released from the ward. But they were so badly bruised because of the cannulas they put into her hands to accept the IV antibiotics and direct the flow into her body. A cannula is a small plastic pipe with a tube at one end and a clip at the other. The clip end faces out and the IV feed from the bag of antibiotics is fastened to it.

Because mum's skin is delicate and because she has the bad habit of taking the cannulas out of her hands when they're not connected to the IV feed, her hands become bruised like this because new sites for the cannulas have to always be found. It'll be the same story if she's readmitted to the hospital again at some point in the future. But when she got out of the hospital she forgot that she had been in hospital, and so she had to invent a reason why her hands were so badly bruised. This is how she works it out:
I don't know what's wrong with my hands. Something to do with an unrestrained horse in the back of a car with no bridle. I don't know how I got into that situation but I was in a sedan with a horse in it.
I tried to talk her around it:
It's not true you know.
You were never in a car with a horse in it.
Oh [well], it was a good story.
Finally she accepted my version but you can be sure that if I bring up the subject again tomorrow when I visit her in the nursing home she will revert to the story of the horse in the car. That's just the way dementia works. It seems strange to us, almost willfully blind, but to her it's the only realistic solution to an intractable problem: how did her hands get so banged up?

Saturday, 11 June 2016

Decisions to be made about mum's future health care

Mum and I went out to the park again today with the wheelchair. The children were playing soccer on the field and I put mum next to the second bench, and I sat on it, and we watched the kids kick the ball around the place. Some of them were quite good. After about 15 minutes we went back inside due to the cold.

I had managed to get onto my brother in Houston on the iPad this time, and I told him about mum's frail condition, and how she was prey to infections, and could be back in hospital at any time. When we had finished talking I went down the hallway to the nurse's station to ask if they could dress mum's leg as I wanted to take her outside in the wheelchair. The nurse told me that they had seen that we were talking on the iPad and so had not disturbed us when they had called earlier to dress the leg in mum's room.

While the nurse was doing the dressing another nurse came by to talk about various things that had been my preoccupation for some weeks, namely the likelihood that the nursing home would one day soon call me again to ask if mum should be readmitted to the hospital. I had also been pressingly engaged with the request that I knew would come from hospital staff - because of the advance health directive (AHD) we have in place - as to whether mum should be treated with antibiotics to cure the infection when it came. This had happened last time. It would again be my decision to make.

The nurse told me that it might be possible to put in place an alternative AHD. She also suggested having a meeting with the deputy director of the nursing home and also the GP so that we are all on the same page regarding mum's health care, when it comes to making decisions in future about it. She said she could organise this meeting for next week and asked what day I would be available. I checked my calendar and said I was pretty much free the whole week.

The reason I think it is important to have this kind of meeting is to make sure that mum's wishes - as expressed in the AHD - and common sense are adequately allowed for. Take the way the hospital has been handling mum's case since her last admission. Not only did they call me to ask if antibiotics should be used - because the AHD says not to use them for terminal illness - but to ensure that there is a degree of common sense around her treatment. In this case I like to keep in mind that the hospital kept mum in the ward for a second round of IV antibiotics because she obviously needed them, but also because the only way they could be administered when she is in the nursing home is through a pick line: a tube inserted in the arm and into the body for the fluids to enter the body through. A pick line was clearly thought to be too invasive, and so they chose the less invasive option.

Even in the best cases there are invasive treatments involved in hospital admission, including for example the catheter that is inserted in the urethra when the patient is still unconscious in the emergency ward. Then there are the cannulas - which mum is always wont to take out of her hands because she forgets what they are for when they are not plugged into a bag of antibiotics. Cannulas are like small plastic devices that accept the IV feed and direct it into the vein, but they can easily be taken out of the vein by busy fingers. The number of cannulas mum needed this time is attested to in her case by the extent of the bruising on her hands and arms. (The poor woman has devised a fantasy - she was in the back of a car with horses - to explain how the bruises came about. "The horses smelled," she said. "You couldn't make that up," she told me, looking in my eyes, as though seeking agreement.)

Poor mum. She was sitting there while I was having these detailed discussions with the nursing staff about her life. On occasion she said, "I'll just go," as though this might make the decision any easier in future. I felt terribly touched when she said "I'll just go" because I know she is saying it to avoid burdening me with any more responsibility. Not that she really wants to die. (Not that she really wants all that terribly much to live either: we talked briefly about voluntary euthanasia and how it is dealt with by the state in Australia today.) But it is a terribly hard conversation to have - the conversation we had today - because when it comes down to it you are dealing with an infection that can only be treated by antibiotics available in IV form, and that only hospitals can dispense. In mum's case therefore you come down to admitting her again and again and again to hospital, and getting her out for a week or two at a time in between. What kind of a life can that be?

Friday, 10 June 2016

Took mum to the park in a wheelchair

Up at the nursing home today I first saw mum in her room watching TV. The first thing she said to me was, "I've been in the wars," showing me her bandaged finger and the bandages on her right leg. The finger bandage is for a haematoma that has formed on the last segment of her index finger. The leg bandages are for the always-to-be-feared cellulitis, the chronic infection that keeps landing mum in hospital. I agreed that it all looked very dramatic. In my heart I was thinking furiously, assessing the likelihood of another hospital admission, wondering when the next call from nursing home staff in the early morning would come.

In the end because it was a nice enough day today, with plenty of sun, I decided that the best thing would be to get mum outside. I asked her if she wanted to go to the park. "Not really," she answered. "Is it your leg?" I asked. "I don't know, I suppose so." "Maybe we can take a wheelchair instead of walking," I suggested.

So I went out into the hallway to the nurse's station by the elevators and asked someone there if I could borrow a wheelchair. He brought around a black one but it had no footrests, so I asked if there was one with footrests. He went away and in a few minutes emerged from the hallways with this lovely blue wheelchair, which seemed just right. It had footrests and everything.

I got mum into her jacket and gave her a hat from her drawer to put on. Then as we were going out the door mum said she wanted her sunglasses. I got them from the drawer in the chest of drawers next to her bed, and gave them to her. We went down the hallway, me pushing mum who sat there in the chair. Mum felt bulky and heavy in the wheelchair and I wondered if I would be ok with it.

When we got out the front door into the open air, mum made a sound that indicated that she was a bit cold. There would be sun in the park, I thought, so I kept going. We passed the lady at the end who always has cockatoos on her railings. Today was no different and I passed by the cockatoo at a distance of about a foot; the beast had absolutely no fear of me at all. We got to the gate and I opened it with some difficulty and then we headed up the footpath. I noticed that there were no handbreaks in the model of wheelchair I was using. At the kerb we rushed down the short slope to the gutter, then I pushed up into it and we were then in the roadway.

I took the wheelchair to the second bench and parked it on the grass next to the bench, on which I sat down. I had noticed that pushing a wheelchair on grass can be a bit of a struggle, but I decided to worry about the return journey when it had to be made. We sat there making silly smalltalk, singing silly songs we invented about the sun, and commenting on the temperature. After about ten minutes of sitting there mum said she was getting cold, so we headed back the way we had come.

Back up in mum's room she headed straight for the bed and lay down, obviously tired out by the fresh air and the exertion. I took an extra wheeled walker - a blue one; mum's is red - that was in mum's room to the front desk on the first floor, and then walked back with the staffer I met, who took away the wheelchair. I said goodbye to mum and headed home down the motorway.

Thursday, 9 June 2016

Mum is back in the nursing home again

When I went up to see mum this morning she looked happy enough but was also a bit subdued. Her hands are still covered with bruises where the hospital staff put cannulas into the veins for the IV drugs she was given. Mum tried to give me an account of how these bruises occurred, which had to do with being in the back of a car with men and horses, but I told her she had been in hospital. She hadn't remembered this piece of information of course.

She went to sleep after I had been in the nursing home room for about 20 minutes, and snoozed on and off for the rest of the time I was there. I read news stories on my iPhone and caught up on my social media feeds while she slept. We had a cup of coffee delivered during my stay. The nurse also came down to see mum and I asked her to clip mum's finger nails, which was accomplished while I was there. She then took a bandage off mum's right index finger, which had been covered where a coin-sized haematoma has developed under the skin. Because of mum's blood disease she tends to come up in bruises at the slightest provocation.

Most of the time while I was with her she just snoozed away the time in her own dreams. I sat there scrolling through social media on my iPhone while watching the time. I left her alone after about an hour and drove home, bought lunch and had a nap myself. I don't know how long mum will continue in the nursing home. She showed no inclination to go for a walk - although I didn't ask her if she wanted to - and seemed just very tired. We'll have to see how she goes in the days that follow. I am planning to go up to see her again tomorrow.

Monday, 6 June 2016

Mum getting used to the hospital ward

When I went up to see mum this morning she was a bit complainey and had just been on the loo, but got into bed straight away. She was feeling cold. I told her I had been unable to come up to see her the previous day because of the inclement weather. I explained that the emergency services had been telling people to delay inessential travel, and to stay off the roads. She didn't mind. It's just that she felt a bit unwell.

Then I reminded mum gently about her claim the last time I had seen her that she was "working for the government". "Oh really?" She asked. Yes, I said, she had said that she was working for the wife of the leader of the Opposition. "Oh yes," she said today. "I have been. Her name's Margaret." Apparently Margaret had been up to see her. They had become quite good friends. "I see," I said, laughing silently and with a smile on my face. "Are you sure you're not a bit delusional?" I asked. She looked at me in a way that made me understand that she was thinking hard.

Apart from this slight hiccup mum has been ok in the ward in the hospital. Today she refused the pineapple doughnut I brought her with her coffee (she drank all the coffee) but by the time I was leaving at the end of the morning visiting hours she was busily hoeing with her fork into her lunch, which today was ravioli with mashed potato, strained pumpkin and green beans. She at least seems to have regained her appetite.

I reminded her that she would be going to go back to the nursing home soon, and asked her if she preferred it. "Oh I don't know, it's alright here," she said vaguely. "But you have your own room there," I offered. "Oh yes, there's that," she admitted. I told her she might end up in the hospital again if the infection - which they are treating as one that is untreatable by most antibiotics - comes back. "Oh well, then I'll just cark it," she said mildly. I told her that they could probably just treat her again with antibiotics the way they were doing this time. She didn't seem particularly phased by anything that might happen to her, even a sudden end of her own existence. It was as though she has become pretty much resigned to whatever fate throws at her. Which I guess is part of her dementia. I assured her that she would most likely be fine.

Saturday, 4 June 2016

Mum still in the hospital ward

Up at Ryde Hospital this morning mum was content enough but lacked some of that upbeat spark she has when she's really feeling well. Maybe it was just a bad day for her. She has been in the hospital this time for about a week but the release date has been pushed back because the doctors wanted to make sure about the infection before that step is taken. At the moment it looks like she'll be released on Tuesday but there's no absolute guarantee of this.

She seemed a bit dull to me today. I arrived at the start of the morning visiting hours and when I got there she was on the loo. When she got out she padded back to the chair next to her bed and sat down. I gave her the doughnut I had bought her and she ate the whole thing. We didn't talk much because she was not in the mood apparently - I didn't press her - but she was a bit confused, saying some things that suggested she had been delirious. "I'm working for the government," she said. "And I'm working for the wife of the person who runs the Opposition. Whose name escapes me. I'm terrible with names, I really am."

That was all she said but it was a bit strange. The last few times this week I had seen her there was nothing like this. She went to move her bowels later in the morning and when she came out of the bathroom she sat in another chair, in the corner of the ward room. She just sat there hunched over like she does sometimes in the nursing home, when she's not feeling tip-top. She came back to her bedside though when I asked her to, because I didn't want her to make the other person in the ward uncomfortable. When lunch came she ate a bit while I was sitting there. Then I went out to get something for myself to eat. When I came back she had opened the sandwich and the container of fruit, but she refused to finish her meal or touch either of these two items again. She opened the ice-cream and ate most of it, however.

I had to leave not long after she finished with her lunch, because visiting hours in the morning only go to 1pm. Overall I thought she looked a bit subdued. Not at the top of her game. She snapped at me for suggesting she eat more of her lunch, but otherwise conversation was not very lively. 

Sunday, 29 May 2016

No knowing now how long mum has to go

A nurse at the nursing home called me this morning to tell me that mum was not responsive and had not been able to get out of bed. They wanted to know if it was OK to call the ambulance and get mum taken to the hospital again. I said it was fine. They told me later in another call that mum would be taken to the Royal North Shore Hospital but this plan was changed, when I spoke with my cousin, who had phoned the nursing home herself for information. They were actually taking her to Ryde Hospital. This is the seventh time for mum to be admitted to Ryde Hospital since we moved her to Sydney 18 months ago.

My cousin had called the nursing home to find out more about the onset of the infection this time. Mum had been due to start taking a new type of oral antibiotic but the nurses had realised that mum was allergic to it. For this reason the only option was to get the hospital to bring their significantly greater resources to bear on the problem.

I arrived at the hospital later in the morning and after going into the Emergency Ward I spoke with a doctor, who discussed with me the implications of mum's advance health directive (AHD). I had gotten a copy of this document the day before and had scanned it and emailed it to my cousin, who works as a physiotherapist and often works in hospitals. The doctor talked with me about the options available and I told him that I had thought a lot about what to do if the drugs stopped working for mum. In effect, mum would be put in a ward and given palliative care to ensure her comfort, but more intrusive methods of maintaining consciousness would not be performed.

The doctor told me that I was holding up well in the circumstances, but it's been clear to me for a long time that this kind of process would be inevitable at some point in the not-too-distant future. The truth is that mum is burning the candle at both ends. Because of her blood disease (myelodysplastic syndrome) she takes medications that make it more likely that she will contract infections, so when it comes down to it you're trying to do two things that are basically incompatible, with the same body. And then there was the cellulitis in her right leg that was causing constant problems.

Today I stayed in the building as long as possible but it was getting late and I had to get home to do some chores and get ready for the next day. The plumber is coming in the afternoon tomorrow to try to fix the mixer tap in the shower in the second bathroom. I will try to get up to the hospital tomorrow morning to see how mum is getting along, but for the rest of today she's going to have to go it alone. In the end we're all going to be alone anyway. We face the end alone just as alone we face the many trials during our lives that really test our mettle. Sleep well, mum.

Saturday, 28 May 2016

Mum chipper despite antibiotic resistance of infection

I went up to the nursing home this morning not knowing what I would find. Yesterday the GP had called me on the phone to tell me that the most recent antibiotics mum had used would not work because the infection in her leg is resistant to them. That went for both the IV antibiotics and the oral drugs. He also said that there was one more oral antibiotic drug that might work, and he would start mum on a course of them. But the nurses realised later that mum was allergic to this drug..

Nevertheless, mum seemed to be quite well when I went into her room. While we were talking to my brother on the iPad the nurse came to change her leg dressings, and despite the fact that we were talking with my brother I waved her in so that she could start immediately. She had said that she could call back later to do it.

The right leg is the one that is badly infected and there are two adhesive bandages: one on the right side of her lower leg, and one on the top of her foot. Both bandages are covering sores and the one on the foot seemed to be weeping in part of the sore. The leg itself is not as red and hot-looking as when I had seen it during her most recent hospital admission, but it is still pretty affected by the infection. It is the one that has stopped mum walking with me to the park.

We were talking about a faerie book that had come out in the 70s, when I was a teenager, which was a kind of catalogue of dwarves and elves. I asked my brother about it and he went online to try to find it, although he couldn't. Mum said she had elves in her room. I think she said this in reply to my statement that the book was so remarkable, for me at the time, because it so scientifically classified all these imaginary creatures. Mum said she had elves among the leaves she collected from the park and brought back inside. She's the only resident to bring assorted leaves off the ground back into the nursing home, so she's a bit remarkable herself in that way.

She told my brother that she doesn't mind dying, and that she'll just slip away. I think she said "slither away" at one stage, which was funny for us because my brother keeps snakes in his house. She said that she will just slide away when her time comes. "I don't mind," she said. "I have lived long enough. How old am I?" I told her she was 86. "Yes, well 86 is quite old enough, I think," mum added. We'll have to see how these latest antibiotics work. There is another option for her if they do not work, but I think it might be a bit intrusive for her. According to her advance health directive it might be a bit too much for her to handle. I can just imagine the fuss she would make if the hospital staff started to put a line into her neck.

Friday, 27 May 2016

Sometimes a stranger is the best person to listen

I went into the GP's office this morning to get a referral for my psychiatrist, and also to get my right ear irrigated because it was clogged and my hearing was being affected on that side. While the doctor was syringing my ear to get the wax out of the canal we chatted about my mother and her situation in the nursing home. We talked about how mum has cellulitis and whether a nursing home was a poor environment for infections generally, but he said that cellulitis is brought on by physical inaction and low resistance to infection due to old age. I mentioned that I sometimes felt guilty about my mother's cellulitis because I thought that nursing homes might be bad environments for cleanliness. He said it wasn't necessarily true.

I also talked about how I had brought mum to Sydney from southeast Queensland in December 2014 following her diagnosis for dementia in March of that year. He said that looking after someone with a degenerative mental illness like Alzheimer's can be tough. "We all like to think that we will look after our parents," he said, "but sometimes it's not always possible." He sounded quite calm and neutral about it, so I had no reason to doubt him. I am sure that he talks with a lot of people about their elderly parents in the course of his daily work. So it made me feel better.

Then I told him about how, in the middle of 2012, I stopped freelancing because looking after mum was taking up too much time. I told him of one week around that time when I had to take mum to the GP every day for a week. I have always wondered if giving up journalism was a wise move, because now I feel the lack sometimes of a guiding principle in my life. I mean, I go and see mum every two or three days in the car but at other times I might sometimes feel like I am at a bit of a loose end.

It was relaxing to talk with the doctor while he was engaged in the essentially simple task of irrigating my ears. It was quite intimate and personal, and I felt as though I had his complete attention. I don't think he minded that I talked to him in this way during the procedure. He seemed quite relaxed about it. He said that it is a novelty for people to live as long as they do nowadays. Even 20 years ago people were dying ten years earlier than they do now. I had ventured that in the previous generation people were dying at age 65 or 70. So we were on the same page essentially. He also said that because humanity is quite a recent form of life, evolutionarily speaking, we have not really yet worked out how things like old age should be organised.

Tuesday, 24 May 2016

Book Chat, Episode 4

Books talked about in this episode of Book Chat:
  • Death by Water, Kenzaburo Oe (2015)
  • To Hell and Back, Ian Kershaw (2015)
  • Flight Behaviour, Barbara Kingsolver (2012)

Monday, 23 May 2016

Book review: Everywhere I Look, Helen Garner (2016)

I seem to remember this book being talked about on TV by Leigh Sales as a book replete with positive stories but I have to admit that, for me, this strange little miscellany resembled nothing more than a collection of bric-a-brac. All very entertaining, I'm quite sure, but it's not something that has a solid core that you can easily address in a critical appraisal like the one you are currently reading.

To be quite honest the pieces that appealed most to me were of an autobiographical nature. I've not seem diary entries being used in this way by a reputable non-fiction author before, so it was something that strikes me as being out-of-the-ordinary. But I loved reading about Garner's children and beloved grandchildren. She is, of course, the age of anyone's nanna, and is well qualified to be telling people what she thinks of little Tom or whomever she is charged with keeping an eye on at any one time. There is a deep humanity at work in these whisper-slight vignettes, small slivers of time and action that capture something of lived experience in a fresh and engaging way.

Elsewhere in the book we find some of the reportage for which Garner is probably now most famous. She has spent many, many hours seated in courtrooms taking notes and observing the proceedings in camera. Here you will find some new pieces - though short ones - to add to her well-known catalogue of writing on crime and the darker parts of the human soul.

I was sometimes terribly moved while reading this book. Often I would skip quickly, with a sigh, from the end of one piece to the beginning of the next, eager to discover what new gem Garner had chosen to display for my entertainment and instruction. The difficulties of other people's dogs, the problems with being of a certain age and female, or the wonder of small boys who say outrageous things without even meaning to. Life is a puzzle. But you'd have to say that despite the irregular construction of the whole the parts are very much worth the reading. And finishing up with a tour-de-force on the non-linguistic medium of ballet serves to highlight most forcibly the rare quality of Garner's art. 

Friday, 20 May 2016

Mum is back in the nursing home

Mum looks happy in this photo I took today at the nursing home but she told me almost as soon as I walked in the door that she "didn't want to go for a walk today" because of her leg. She said that yesterday had been busy, and she had walked a lot. Which was not true, although she had been brought back from the hospital yesterday. She had evidently got things a bit confused.

When I arrived in the room this morning the acute post-acute care (APAC) nurse from the hospital was there with all her gear but she said she couldn't administer the IV antibiotics because mum had taken the cannula out of her arm. Mum remonstrated that she must have taken it out overnight, when she was asleep, but the fact is that mum usually forgets that she has to keep her cannula in, and because it annoys her she just picks it out of her vein with her fingers.

Later, the nursing home nursing staff came down to mum's room to talk with me about this, and then later still an ambulatory doctor came by the nursing home to put a new cannula in mum's arm. She was efficient and only got a little blood on the arm of the chair where mum's arm was resting. I mopped the blood up with wet tissues. I left not long after this so I didn't witness the APAC staff coming by again to administer the IV antibiotics, but I did watch one of the nursing home nursing staff put a bandage around the cannula in her arm to prevent mum from picking it out again.

Mum and I chatted however and sang silly songs so that mum laughed a bit. We did get onto my brother in Texas on the iPad but he was asleep when we called so we rang off soon enough and let him get back to his rest. In general, mum was in good spirits today, and showed again that the hospital treatment had been efficacious. Of course, the effects of the IV antibiotics will wear off in time and then who knows? Mum turns 87 in October and as things stand she looks likely to reach that milestone, but further than that it's hard to say with any certainty what will happen with her health-wise.

Wednesday, 18 May 2016

Mum feeling better in the ward

Mum was joking and laughing when I went up to the hospital to see her today. Her condition since yesterday had improved considerably, and staff told me they would probably be discharging her tomorrow. The plan was to continue the IV drip in the nursing home using APAC staff (staff who are attached to the hospital but who do their work in other locations, like private homes and nursing homes).

While I was visiting, mum's lunch arrived and I watched as she ate the whole thing: the chicken with sauce, the green beans, the mashed potato and mashed pumpkin. The exception was the chocolate pudding - a kind of mousse in a sealed container - which she kept a spoon for in case she decided to eat it later on. (She cheekily stowed the spoon away to hide it under the bedcovers, but then showed it with a smile to the orderly when he came by to collect her tray.) I ate a pie and an egg-and-lettuce sandwich from the kiosk outside. There was also coffee, which is quite decent.

But she was being quite silly while I sat there sending messages to people and reading them out to her, when people replied on my phone. The cloud had blown over, and blue skies were visible again. Who knows when she will have to be back in the hospital for treatment of an infection, however. It's impossible to say.

Tuesday, 17 May 2016

Mum back in hospital for treatment of cellulitis

The deputy manager from the nursing home rang me at about 8am this morning to tell me that mum's leg wasn't responding to oral antibiotics and that they wanted my permission to move her by ambulance to the hospital. I agreed straight away, because I knew how bad the leg had become: red and hot and uncomfortable. "Poor mum!" I thought.

About an hour later the hospital rang me to clear up some things about the advance health directive (AHD); they had pointed out that mum had specified in it that she didn't want antibiotic treatment or intravenous saline. I told them to rather go ahead with these treatments so as to cure her infection.

I had a meeting scheduled at home for later in the morning and didn't get up to Ryde Hospital until almost lunchtime. Mum was awake after I parked my car and walked to the ward the staff pointed me to. She looked at me with her big, gentle, Yoda eyes - giant orbs in a pale face - and said she was feeling ok. I went out to get a pie and a cup of coffee. I bought a coffee for mum as well, and she had some when I got back to my place beside her bed. I spoke with two young doctors about mum's situation and they said the cellulitis is treatable; the confusion with the AHD had derived from the definitions it used about mum's physical state. Rather than terminal, she was suffering a condition that could be treated. At least I confirmed that it was the 2014 AHD that I had helped mum prepare that we were all talking about.

Later, I spoke with one of the ward's nurses, an older woman than the young doctors, who had years of experience evident in her lined face and accommodating smile. I fed mum some of the lamb-and-pasta with broccoli that appeared soon after. I filled out a communication form that would help ward staff in case of mental deficit such as delirium. I offered mum sips of her cooling coffee. When the visiting hours elapsed I left the ward. It was just before they were to move her bed from its location in the transient section to a more permanent place in the ward. 

Monday, 16 May 2016

Some leg dramas for mum at the park

When I got up to the nursing home this morning I could hear protesting coming from mum's room even as I was walking down the hallway. The nurses were looking after her right leg, which has bad cellulitis, and she was making loud remarks as they did so. They only stayed a little while after I arrived and then I got onto my brother in Houston using the iPad. We talked for about 20 minutes, just silly stuff about snakes and bears, before we had another visitor, our old accountant, who was there visiting another resident and had dropped by to see mum as the opportunity arose. He was in the room for only about 10 minutes before he had to leave too, then I got mum ready to go out to the park.

We made it to the park and I was heading to the second bench but when I turned around mum had already started off on the grass heading for the first bench, so I changed tack. We sat for a while but there were no dogs to watch. When it was midday, and time to leave, we got up and headed back across the grass but mum soon started to protest about her right leg. We got to the corner of the street, on the footpath, and she said her leg was very tired.

I sat her down on her walker, on the seat and, facing backwards, maneuvered the machine across the road and onto the opposite footpath. Then I turned downhill, still facing backwards, and guided the machine down toward the gate. Mum's feet were juddering along on the footpath on the heels of her shoes but she didn't seem to mind. I asked if they hurt but she said, "No." When we arrived at the gate I got the walker with mum on it inside the enclosure and put on the breaks. Then I told her to wait until I went inside and found someone with a wheelchair who could help us.

Hurrying inside, I asked the lady who was staffing the front desk if there was anyone with a wheelchair to help us, and pointed out that I had left mum outside. She went around the counter to locate a wheelchair in the cupboard but there was not one there. Then she happened on another staff member who she asked to help us; he quickly went upstairs and came back promptly with a wheelchair. I went outside to wait with mum. When the staffer arrived we got mum out of the walker and into the wheelchair, and brought her inside and up to the first floor, where they had set all the dining tables for lunch. We got mum into a spot at her normal table. I went back to take her going-out things to her room. I came back out in a few minutes and said goodbye to her.

She said to me when we were outside that she didn't mind not going out to the park. I had mentioned absent-mindedly that it might not be possible to take her out again while her leg was so sore. It would be a shame on her account if she were not able to go out any more, but it's tough if you have to go to all the trouble we went to, to get her back inside. In future, as it may be, I might have to borrow a wheelchair from the staff and take her out in it, rather than have her walk with her own walker and her sore right leg.

Sunday, 15 May 2016

Who cares if books are coming back, I have an ereader

Well here we have another learned boffin being wise in hindsight - if this article on ereaders versus printed books had been published five years ago it might have had some merit - and pronouncing on the death of the ebook. For myself, I love my ereader. I used to go to the bookstore and buy half-a-dozen books at a time, and maybe get around to reading three of them, if I was lucky. Now, with social media, I buy books that have been recommended by people I know and I read almost all of them.

The other great thing about the ereader is that I don't have to store bloody great slabs of books on shelves - which have to be bought and delivered as well - because everything fits inside the ereader itself, and that takes up no space at all.

Ereaders are also easier to read in bed; they're lighter and more handy; and they don't have to have bookmarks added because the books are marked electronically when you stop reading with a simple tap of your finger. Turning pages is a snap - you just tap on the page at its margin - and then you can put down the thing when you're done and go to sleep.

What makes me so annoyed with the kind of superior reverse shamanism embodied in the article in question is that anyone could have written it. There's no great revelation about the fate of books. There's no forecasting and deadly accuracy to make it shine. It's just a bit of fluff beaten up with a few random facts to make the author sound interesting. It's the worst kind of opinion. I call it humbug!

Saturday, 14 May 2016

Mum is doing ok

When I arrived at the nursing home this morning mum was asleep on her bed. She sounded drowsy when I woke her up as I came into the room. She complained of her right leg, which has been giving her problems due to cellulitis. This was as she was putting her feet on the floor and walking to her orange lazy chair. That's where she sits when I call my brother. I called him today and we chatted, the three of us, for about 20 minutes. It was a bit silly.

The silliness continued when I took mum outside for a walk to the park. We sat on the first bench because the second one was already occupied; schoolboys were playing soccer on the playing field in the park. I started talking in a thick French accent. I said I was a tough dockworker from Marseilles. Mum punctuated the discussion by spitting occasionally on the ground; she does this sometimes, I'm not sure why. Anyway, we sat in the park for about 25 minutes then headed back inside. They had set the tables upstairs for lunch and I left mum there to wait while I put away her going-out things: sunglasses, her hat, and her woolly jacket.

When I got back to her table she was sitting with her head placed in front of her on the table. She does this sometimes. I'm not sure why. It's the same as when she gets into the lift, which has mirrors on three sides. Each time she gets into the lift she pokes her tongue out at herself. I tell her she should respect herself, but perhaps inside the nursing home she has lost some of that self-respect. Maybe she feels worthless. I don't know. I told mum as I walked away today that I would be back in a couple of days. "A couple of days?" she asked. "Yes," I said.

Sunday, 8 May 2016

Book review: Farewell to the Father, Tim Elliott (2016)

This is a moving and powerful story of understanding and rebirth that comes in two parts. It is first of all the story of journalist Tim Elliott's father, who lived for years with depression and would probably have been diagnosed nowadays as bipolar. He was someone who in the end brings his own life to an end through an overdose of pills. This part is gruelling enough - though told with the compassion (for both the father and the young Tim, the youngest of four children) earned by living until middle age - but in the second part we must deal with the realities of Tim Elliott's own depressive episodes.

In this second phase of the book a lot of mistakes are made - often, as with the quantities of alcohol Elliott consumed, the same mistakes his father had made - but the process of growth and enlightenment brings him to a place where he is able to truly enjoy something that he has helped to build. He has three daughters and a loving wife - a woman he met when they were still at school, and who he split up with before going back and getting in touch with again in his late twenties - and a stable, supportive home life. He has a job he obviously loves doing (the journalist-turned-autobiographer seems to be something of a trope these days; I'm thinking of David Leser here, and his book, which I reviewed in 2014, To Begin to Know, which is also about the writer's father) and he obviously has attained a level of skill in writing that is uncommon and fulfilling.

(Though all-too-common in actual fact. They say that all journalists have at least one book in them. Considering the number of skilled journalists there are in the community, there must be a metric square ton of great stories just waiting to be written by these underappreciated members of our society.)

As someone, myself, who has fought to understand and come to terms with mental illness - in my case an illness that I live with personally - this second part of Elliott's book is particularly fascinating. There are many moments of great drama in it, moments that mark points of crisis, times of understanding, and periods of difficulty lived in all its turbulent colour. But there is also a lot of wisdom here in these pages as well. Elliott has tried to learn from the mistakes of his father - though as often as not they are mistakes he makes himself at one point or another - and we are also confronted with the stark fact that medical science has made gains in recent decades that can only be understood if we look back at the ways people coped with mental illness in earlier times. The drugs, for a start, are a lot better now. There is also a lot more understanding of the reality of mental illness in the community, which includes of course being able to sensibly discuss it with people so as to enable people living with it to continue to live in the broader community, and to live rewarding and productive lives.

I found reading this book a great joy. There is a tremendous quantity of drama in it, for a start, and drama always makes for great reading. (Great storytelling thrives on drama, and all journalists are taught to find it in each story they write in order to give the reader a reason to keep on reading.) But there is a lot more besides, and so this book can profitably be read by anybody, whether they have experience with suicide and mental illness or not. 

Saturday, 7 May 2016

Smoke haze over Sydney

This is the view just now, in the mid afternoon today, but this morning you couldn't see any of the city's towers from the windows of the apartment. I got up and scented smoke in the air when I was still in the bedroom. Then I went out on the balcony off the living room and I could clearly smell the burn in the breeze. I thought this morning at first that they had had a fire in one of the foreshore parks down the street on the harbour, where they have trees and bushes, but as soon as I went online I could see from the news website that they had done hazard reduction burns the previous day in the Blue Mountains. The smoke in Sydney was the aftermath of that burning.

The view from the balcony at the moment reminds me of the Sailor Moon cartoon in the 90s, which often showed long-distance shots of city skylines, places of comfort and stability. The urban landscape in Japan as nirvana, a kind of promised land of peace and flourishing. (Which Japan is, to some extent. It still represents, to me, a magic country where strange and beautiful things can happen every day for no specific reason.) But seen in Sydney in autumn it had other connotations for residents of my suburb. At the corner, where the Terminus Hotel sits rotting peacefully, a woman was standing with her mother (I presumed; the elderly woman had a wheeled walker in front of her like my mum has when she goes out) who sat on the bench on John Street. The woman said as I walked past: "It's like a bad day in Beijing!" Her voice was loud and assured, and I wondered if she had said it for my benefit; I was on my way to the Japanese restaurant for noodles.

It has been a strange day though with the hazy air. There's even a hashtag on Twitter (#SydneySmoke) which is getting a bit of traffic. Everyone wants to join in. When the event is as widespread as this smoke haze - when it encompasses the city's entire population - you're sure to get participation. As well as giving us all something to talk about in tandem, the haze also serves to remind us that we live on a single, vulnerable planet and that environmental protection is a global responsibility. We all have a responsibility to work together for the benefit of the global community. Political boundaries mean little in the face of climate change.

Friday, 6 May 2016

Nothing much is happening ...

Normally I feel guilty if I don't post something on the blog each day but lately I seem either to be less motivated to open up about myself or else I'm just generally feeling lazy. There are these big gaps in postings here on the blog. But to be truthful nothing much is happening in my life.

Every two or three days I drive up to see mum in the nursing home. Each visit will normally include a conversation on the iPad in mum's room with my brother in Texas, a walk in the park, a period sitting on a bench watching dogs gambol in the park, and a return to the nursing home before lunch starts around 12pm. I am usually home again by about 1pm, so each visit takes me about 3 hours to complete from when I leave in the car to when I return to the apartment.

I will then see about having some lunch. Mornings when a visit to the nursing home is not on the cards I will usually just schlep about the apartment or else go to do an errand - like buying groceries, or topping up a prescription - before again thinking about lunch. Lunch will vary depending on mood. If I have something in the fridge I will make lunch at home but otherwise I will go out to eat. Then it might be ramen noodles, sushi, or a chicken-schnitzel roll and chips. It's all pretty simple fare for a simple guy.

Afternoons I will usually have a nap. Or not, if I have slept in late in the morning. Then around 3.30pm I will start to drink wine and engage on social media with the news turned on in the background. This continues until about 5.30pm at which time I will make dinner - these days I don't go out to dinner at all - and then settle in to watch TV for the evening.

Plain days. I read before going to sleep, in bed. But that's it really. There's nothing most days to justify writing a blogpost. Last night, for example, I wrote about killing a cockroach - the little beast was climbing the wall as I was reading in bed - but it didn't seem to be a weighty enough subject to justify a blogpost, so I just wrote about it on Facebook straight up, without blogging about it. I think a blogpost has to have an episodic materiality to sustain itself, although to be fair I have written some very short ones in the past. But when it comes down to it a blogpost must have a certain heft and moment in order to sustain itself. This subject I'm writing about right now, for example, is a tenuous gambit if you want to be completely frank about it. But there you go.

Monday, 2 May 2016

Saved by fresh Sunday programming

When programming on the ABC channel is less than optimal I choose to watch ABC News 24; these are the two channels I watch most of the time. On occasion, on weekday evenings and on weekends also, I might switch across to SBS to catch their news program at 6.30pm but most of the time I am a dedicated ABC user. Which is why weekends are so frustrating.

When the main programming on the ABC channel is not the kind of thing I like to watch - as it usually is on weekend evenings - I get my feed from ABC News 24. In fact, I start watching ABC News 24 from about 3.30pm when I start drinking wine. The problem with weekends is that the programming on ABC News 24 at thee times is alternately repeats of programs that have been shown at other times on the main ABC channel. This can be a bit frustrating, for obvious reasons. Nobody wants to be forced to watch something they've already thoroughly consumed. Luckily, I am on social media with the TV on in the background when a lot of these shows screen for the first time, so I am not completely familiar with them. In these situations I can watch the repeats with a fair quantity of sang froid, but it really depends. Offsiders, furthermore, is just a complete chore as I hate spectator sport.

Luckily, things get a bit better on Sunday nights because there is a bit of original programming, including Australia Wide, which comes on just after the news. Then they replay Insiders, which I normally haven't seen because in the mornings on Sunday I am busy doing something other than watching TV, or else I am on social media with the TV on just in the background.

But there is another problem with this kind of saturation exposure to ABC News 24, which is that the news segments they screen every 30 minutes are often largely identical. It gets a bit tiresome to see the same stories covered time and time again, which is why at 6.30pm I switch across to SBS. I can get a fresh perspective on the daily news, which means new stories.

I understand that ABC programmers are scheduling their best programs to air when the largest number of viewers will be in front of their TVs to receive them. This is why Monday, Tuesday, Wednesday and Thursday viewing generally contain higher quality programs. But I don't go out on Friday and Saturday nights. So I am exposed to the weakest screening times for the ABC, and I find it tiring and dull. I frankly look forward to Mondays when the programming is fresh again. Mondays are fun.

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.