The patience of Job

I trained to Wauchope last Sunday afternoon, and returned to Sydney last Tuesday night. My younger brother, Ross, and his wife, Robyn, drove there from Newcastle this afternoon and return tomorrow afternoon. I go up there again this coming Thursday and Friday. Each trip costs me about$150. I want to continue to go up there each fortnight for a while longer yet.

When we were shown the results of the CT Scan on Baz in at Port Macquarie Base Hospital, the geriatrician said that many/most people who have a stroke of this severity will usually have another stroke within three months, unless the underlying problem can be treated. Barry's underlying problem is that he has an atrial flutter which is flinging clots around his body. This needs to be treated with Warfarin or, at the very least, aspirin. However, there are complications. Not only did Baz have a subacute infarct in his left temporal and occipital lobe, and a smaller subacute infarct in the cortex of his posterior right occiptal lobe, but he also had an acute haemorrhage in the inferior posterior left temporal lobe. The infact measures 11cm from back to front, and the haemorrhage is 5x4x3 cms. There has now been a followup scan, and the haemorrhage has receded minutely. Unless this haemorrhage goes, there can be no treatment with warfarin. Therefore, he is likely to have another stroke.

I have not told Barry this. However, he complained to me that the back of his head hurt and his brow. There was a sizeable indentation in his head - above the haemorrhage. And across his brow appeared to have 'bubbled'. I asked the attending physician at WDH who said this was all the swelling due to the haemorrhage and it was something Barry simply had to cope with. It is when the pain becomes suddenly sharp that they know Barry is in real strife. This cannot be masked.

Barry cannot read, and he cannot do Sodoku. He cannot watch television. However, he was playing Bingo when Ross arrived this afternoon. He calls Ross 'his brother' and he calls me 'his sister'. He can tell the time because he was anxious when I arrived on Tuesday at 10:03am. The rehab unit said that some of these smaller skills may flow in and out. I tried to browbeat him into getting into his pyjamas to go to bed each evening, and to put on casual clothing for the daylight hours. I will ask the nursing staff how this is going. I am sure they have to remind him. He is now going to the toilet approrpriately, rather than using drawers or waste paper bins.


I am very pleased with the nursing home up there. Bundaleer. It appears to be very well staffed, with an adequate number of RNs to aides and cleaners. They were very kind to me, like family in many respects. I need to check just who the visiting GP is - Dr G or Dr K. I have also spoken with the private speech pathologist who will include Baz in her weekly rounds. Now to get on with the application ot the Guardianship Tribunal for the powers to oversee the financial and medical decisions that I am making. I asked Barry for permission to do this. Not sure whether I got it or not. But at least I tried to tell him, which is my legal obligation.

Ross and Robyn are doing massive amounts of work on Barry's stock of leather belts which were all around his house. Probably with a market value of close to $10,000. They have three markets lined up to try to sell them all in the lead-up to Christmas.

I have paid a young lad, who also lives on the cooperative farm, to slash the jungle around Barry's house, and to bash down the bamboo. However, with all the rain this week, the paddocks are sodden and the creeks are flooded. I need to get out there to see the condition of the house and immediate paddock. With noone living there, the situation will deteriorate rapidly. I hope his dog, Free, has stayed with his 'new owner' and not done a homing-pigeon. I have not mentioned the farm, or the dog, or the truck to Barry. And, tellingly, he has not asked. It was only this afternoon that he asked Ross where he was and how long he was going to be there.

What to do for the best

Last Wednesday, at their weekly assessment meeting, the rehab team at Wauchope District Hospital, deemed Barry not to be making sufficient progress to warrant staying in rehab. He had been there three weeks, and the improvement was minimal. So the Aged-Care-Assessment-Team (ACAT) was called in. Today, the ACAT team 'interviewed' Baz, having interviewed me yesterday over the phone.

The ACAT team wants to assess Barry as requiring Low-Care or Hostel Care. They are going to discuss with the Aged-Care facility of our choice, Bundaleer, whether they have space for him, whether they will take him, and whether they can support the specific care-plan that he requires. Bundaleer is the only aged-care facility in Wauchope. It has a 55+ area, a 100-bed Hostel, and a 40-bed Nursing home. I had discussed availabiltiy of a Nursing HOme place for Barry and one was being held for him. However, I had not organised a Hostel place for him.

However, later this afternoon, I received a phone call from the Rehab Unit. They are convinced that Barry should go into High Care, not Low Care. So, we have a bit of a stand-off. However, the professionals are going to sort it out. The Rehab Unit has been with Barry for three weeks, the ACAT team for less than an hour. Rehab is concerned that at night, a Hostel only has two staff rostered on. Barry wanders at night and gets lost and confused and can wander into wrong rooms. This is when he becomes incontinent. During the day, he cannot be left alone for longer than an hour. Issues arise otherwise, and he becomes anxious. Today, he was anxious because a toaster was hot. It had been used to make a sandwich. Cleaned and turned off. But Barry was anxious because it was still hot. He did go and get someone though.

One of the issues, is that Barry has no physical impairment. He is not paralysed down either side, nor anywhere on his face. He knows that something is wrong with his head, but not what. He tries to respond but cannot find what he needs for the grey that envelopes his mind. He is sympathetic to the others in rehab because they are 'worse' than he is. The very injury that he has suffers, stops him from understanding the injury he has suffered.

What I understood from the initial CT-scan is different from what Ross understood from it. Ross maintains that Dr Crighton did not say that the LHS of the brain was destroyed. We were shown a scan with abou 7 slices through the brain. Each slice was nearly totally grey with just a thin line of non-grey around the extremity of the hemisphere (immediately below the skull). A bit like a cowlick in the hair, and about at the apex of a hair-part there was a large blotch of white which we were told was the haemhorrage. This was not the same size in all seven slices, this blotch. Ross thinks that synapses and pathways will be repaired with time. With the second scan last Thursday, we were told that the haemhorrage had shrunk a little, but was still there and still as dense. The stroke was Thursday 27th October, which was 34 days ago. Ross is much more hopeful than I.

There are flashes of interesting insights, though. Today, being shown on a card 7 + 4, Barry wrote down 11. He could not say 'seven plus four equals eleven', but he could compute it in his brain. I told the rehab nurse that Barry is a sudoku fanatic, and they are going to try him on those tomorrow. If all goes to plan or whatever, I will get him a build-yer-own morse code set. He was a radio-technician by trade, in the pre-computer days.

So whilst I would like to see him in a Hostel, I do not really think that is appropriate for him just yet. He would get lost among 100 people, and the care would not be as targetted as may be necessary. The rehab nurse said that his incontinence is improving, now just to control the wandering, and to work out what he CAN do with his brain. Maybe, he will be able to move into a Hostel somewhere down the track.

What I am convinced of, though, is that I can not take him on. I had a long talk with Rehab about this today. They think there is a good chance that he will always have to be monitored by the hour. He is not a physical chore, as long as the incontinence improves. However, he is a mental and emotional chore. And my younger brother and I have both agreed that our families come before Barry. Our families and our own health. That is tough to write, but I acknowledge that it is true.

Top photo taken in Mark Foys Liverpool Street store at Christmas in 1952, making Barry 7, Julie 4 and Ross 2. The bottom photo was taken in the yard of our Hornsby home in 1950, making Barry 5 and Julie 2.