Saturday – visiting Mum

We discussed having the personal call button. Jamie was there. Mum does not feel she needs it, she says that if she is feeling unwell it is due to the ‘cold’, which she has been talking about for a couple of months now. Still, I enjoyed the visit. We went to Maundering to get some salads and bread. Mum cooked some chops for lunch, which we had with salad and fresh bread. There are enough chops over to last her until I see her Tuesday evening.

On the way home I went to Carousel to look for a device which shows the day and date. I found a little weather station at the Australian Geographic shop which should do it.

Stephen and I had leftovers with salad for tea, then watched the Agatha Raisin pilot episode on ABC iView. Robyne contacted me to say that Mum has rung her again and asked her to go up to see her tomorrow. Of course, Marnie is already going and Jamie and Tracy will probably also visit as Tracy will do the housekeeping. Robyne confirmed today that all four of them were there!

It’s hard to tell what is going on with Mum. Last week when I saw her on Saturday the same thing happened, that after I went home she phoned Robyne and asked her to visit the next day. She phoned her Sunday night as well. Yet, Mum had just seen me and Jamie had called in for a while in the morning as well.

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Brandys NL in the late afternoon

Friday – retiring R2D2

The big news of today is that we had a phone call at about 10.00 a.m. to say that the part for our air conditioner had arrived and they had a technician free, would we like him to come out – so we said ‘yes’ very enthusiastically. Today was predicted to be 36 degrees, although the morning was quite bearable with a coolish easterly breeze. R2D2, my nickname for our little evaporative cooler, was retired to the patio at about 11.15 a.m.

R2D2 evaporative cooler retired.jpg
R2D2 evaporative cooler (Rtd)

A consequence of Stephen’s condition was that I had to take the car and drop it off for a service this morning. I tried Bentley Plaza for a device that tells the date and day as well as the time, but couldn’t find anything there. We plan to go to pick up the car together together (fortunately the RAC service centre is on Albany Highway so we have lots of possibilities of buses to get there and back as needed). Stephen will come with me to pick up the car and help with shopping. I was about to go out, then realised that we have entered the hottest part of the day. We hadn’t quite realised as we spent the afternoon in glorious cool air-conditioning. It seems essential in our climate, just as having heating in winter seems essential in Europe. But, not everyone has it, of course.




Thursday 28th – Cottesloe

We met up with Eversley and David Woodroffe at Beaches Cafe for brunch/coffee. Stephen and I were rather taken with their choice of breakfast, advocado salad with poached eggs. I did my best to recreate it for our evening meal, thus:

Imitation Beaches breakfast for dinner.jpg
There’s a poached egg underneath on top of a slice of sourdough bread

We really enjoyed catching up with them both and rejoicing in our beautiful surroundings at Cottesloe Beach. I went out later to do the shopping, including buying a couple of advocados for the evening meal.

The family appeared to have lost touch with Marnie, so I had sent her a text, sort of bringing her up to speed. She rang back and we talked for awhile. She had rung Mum and felt she was sort of ‘brushed off’, so did not try to contact her again. After our phone call she rang Mum and arranged to visit her this Sunday. Mum rang Robyne and said that she would tell Marnie she has a cold, as a way of accounting for any vagueness. So sad, she really is aware to some extent of what is happening and wants to cover it up if she can.


Tuesday 26th and Wednesday 27th, 2016

Australia Day

Australia Day or Invasion Day, depending on your perspective. Caitie’s birthday if you are her Auntie, and like the idea of all the fireworks to celebrate.

We went to see ‘The Revenant’ – pretty gruelling to watch, but very beautiful with some excellent music. It was poetic rather than realistic. On a warmish day it left us feeling pretty cold, especially as the air conditioning was cranked up. We were glad to get out in the fresh air.

After tea we walked to King George St, Vic Park, which gives a view to the city. Other people had thought of this as well and we joined a small, but enthusiastic crowd of people. We brought our small chairs and there were other people sitting down as well. We did indeed have quite a good view.

I took some photos of the usual poor quality that I take at fireworks.


Today I went up to see Mum. We went to the library to take back some books. She didn’t want to borrow any as Jamie has given her a couple of good books to read. We then went to the bakery and bought sausage rolls for lunch. I paid for my own, plus bought some apple crumble and a loaf of bread to taken home. After we ate our sausage rolls we didn’t have room for the apple crumble right away, so had it for afternoon tea.

I showed Mum some of the photos from our travel, which highlighted that I need to sort through and choose about 30 that show the highlights and not show people all the repetition. Mum said I went through them a bit quickly, but I wanted to have time to talk with Jamie afterwards.

Mel, Jax and Alyssa were visiting when I arrived. We sat outside and talked for awhile. I said that I had tried Mum out on having an ACAT assessment, but she feels she copes physically quite well. This still appears to be true in that she is groomed, etc. and the house does not seem that untidy. However, Tracy had done the cleaning on Tuesday.

Mum did not remember that they had both come to the house yesterday, although she said that she thought that Tracy had done the cleaning. Jamie said that he calls in most days for a little while and tells her what day it is. Mum said that Jamie does her bins.

Jamie said that he and Tracy have talked about having Mum to live in the Granny flat when she can no longer cope on her own. Of course, we all feel that she is already at that stage, but do not want to worry her. I told them about our idea of staying there in our caravan, so at least there was someone there. If she comes to live with Jamie and Tracy I said that Stephen and I could be the back up team to cover when they want to go away.

Jamie said that he is pushing for Mum to have a panic button and we agreed that I will set this up. Mum does appear to be receptive to this, depending on when you ask her. She often mentions wanting to see Robyne, though worried about her ‘cold’ and Robyne catching it. However, we can’t see that Mum has a cold now.

Robyne has suggested we try to get an ACROD sticker for the car when we take her out and about as she has difficulty with walking. When we went to the bakery she did not get out of the car, after having had to walk a bit of a distance to the library from the car.

Thus, we have all had a discussion about Mum’s situation and put in our ideas. We are hoping that she doesn’t drive the car, but have not gone as far as taking away her keys.

Stephen’s Health

Yesterday Stephen and I were talking about his situation and he said that he has been feeling a lot better in the chest for about the last week and a half. This corresponds with coming home here to live. It could be that the effects of compression when he was having the seizure have finally healed. Or, it could be that being on the new medication for his heart has reduced the symptoms of angina – if that was the problem.

Our rejoicing was shortlived as today he was bending down to get dishes out of the dishwasher when he hurt himself. He said the pain is similar to the previous pain. It hurts whne he moves around. He was saying he wanted to see a doctor, but I suggested that he should take some panadol to see if it helps. He took one dose with dinner and will take another before going to bed.

I decided to read the report from the MRI again. I had the impression that Stephen had had a small bleed, a mini stroke. But the report raised another possibility of a small growth in the brain, and said of the two possibilities, this was the more likely. When I read up on it (the language was medical and I had to look it up), it said that often the first symptom is when people start to have seizures. We must leave it up to the neurologist to make a diagnosis and another MRI has been recommended as it will apparently indicate if there was a stroke.

Dunes at the Pinnicles north of Perth. Taken a few years ago.

Busy days

On Sunday morning I went to Roleystone to see Marie and Geoff. I wanted to talk with Marie about the possibility of Mum having and ACAT assessment, and she agreed. We also caught up on other things, including thinking about a trip north in our caravans. We decided on the first week in July after school term starts, which is the 18th July.

I asked if I could see their new caravan air conditioner. Their van feels quite spacious compared with ours, they have always had a more powerful car for towing and can take the extra weight. There is quite a lot of kitchen bench space and extra seating. Quite a step up from the old van they had for about 20 years. This one isn’t new, but the design of the interior is very effective.

Matt came about 4.30. I had talked with Hidde about Matt’s clothes for going to the wedding. Although he is going with Matt, no one had told him about the new clothes and Matt had worn his new clothes on an outing to a movie. Hidde said that Matt did not enjoy the movie (Star Wars) and I said that we found he doesn’t seem to like going to movies either. However, in both cases, the movie was fairly loud. Maybe he would enjoy a different type of movie.

Matt appeared to have a ‘wet’ cough, I don’t remember him having it on Thursday when I gave him a drink. His powered chair has him reclined more than is safe (with regard to eating and drinking), and I think he finds it too far back as well.

I did some more practice with driving the chair, I wanted him to have a go as well, but could’t work out how to rig it up for him.

Today I did some housework in the early morning, then we went to the Mount Hospital clinic for Stephen’s stress test. He did not find it a problem, though he said he was not inclined to push things too far. Afterwards we went down to Beaches for lunch and spent some time there enjoying the sunshine.

We had a couple of extra meals from the dinner I cooked yesterday for Matt, so we had one tonight. It has been very humid all evening, and although it isn’t very hot, it is somewhat uncomfortable. I normally shower twice a day, but had an extra one today.

I took an early morning walk on Sunday. Much too early for this market.
Victoria Park Hotel (1 of 1)
After Matt left on Sunday we took a short walk to enjoy the evening light.
Cottesloe Beach this afternoon.

Friday and Saturday

Yesterday Stephen went to his first opera movie since arriving home. It was at Cinema Paradiso. I wanted to get the sensors cleaned on a couple of cameras, which meant taking them to CameraElectronic in Northbridge, and was therefore able to give him a lift. I went to a cafe in the area to do some colouring and read a book on my iPad.

My Cat

They were able to do both cameras on the day and I went back to pick them up at around 4.15 p.m.

Stephen was interested in getting some discounted shirts from Jeanswest, so we went over to the shopping centre on our way home from Northbridge. He found four shirts at $21 each.

We watched the tennis, then went over to the Hawkers’ Market for tea. We looked out for other Vic Park friends, but didn’t seen anyone we knew.

I did some reading on the use of beta blockers in the treatment of heart problems, including atrial fibrillation. It seems a no-brainer that he has been prescribed this drug. Even though AF does not cause heart attacks, it may cause angina because of heart muscles not receiving enough oxygen. Although the pressure Stephen feels when walking is not in the right place for angina, it certainly fits what people often describe as an experience of pressure or something similar, rather than actual pain. Especially since it eases if he rests for awhile. It can be very uncomfortable. Stephen has had this problem for years now, and no investigation has found a reason for it. Of course, it is much worse now, but it sounds like the medication may help to ease the problem. Its main effect is to slow the heart rate, apparently this was a problem the day he went to Royal Perth emergency department.

His stress test has been bought forward to Monday due to a cancellation and his next appointment to see the cardiologist has also been brought forward. The appointment with the neurologist is still the 8th February.

Today we went to see Mum. We spent the day there, sitting outside at first as it wasn’t too hot, then spending time inside watching the tennis. We raided her well stocked freezer for food for our lunch. Mum now has two cooked chickens in her fridge, I suggested that choose one and eat that and throw the other one away as it will be too long out of the freezer to be safe to eat. I’m not sure if she will do it, so will check when I see her again on Wednesday. Fortunately she says she doesn’t feel well enough to drive and I’ve said I will take her shopping on Wednesday.

Joy, Stephen and Susan


An ordinary Thursday

This morning we did some shopping. A new toaster to replace ours which burns toast around the edges whilst leaving the rest untouched almost. Some shirts and jeans from Jeanswest for Matt to wear to his sister’s wedding. The young man serving me was wearing ‘skinny jeans’ and looked about the same size as Matt. His secret, to buy women’s jeans size 8. It seemed a better idea than boy’s size 14 in Target. So, that is what I bought for Matt.

In the afternoon I went over to Matt’s. I wanted to get some practice with his powered chair. As I arrived Matt was arriving home from a visit to the zoo with Nick. I checked with Nick, who said that he wears skinny jeans. Peace was there and she confirmed that the jeans look just the right size for Matt. Matt was taken by the lighter of the two shirts, looks like he will choose that one to wear to his sister’s wedding.

Stephen and I were invited today as well, but it may be a bit too much for us with everything else that is on at the moment. Anyway, I rather like the idea that Matt and Hidde are going together. I think Matt will have a lot of fun. I would like to see Tracey get married, to see her on her special day.

I found it a bit easier to use the powered chair in a bigger space. Just takes practice. Peace said that Matt does some practice each morning.

Jenny and Francis were there, and Matt and the others seemed to be having a good time. Matt was speaking more than he usually does, nodding and saying ‘yeah, yeah’ when asked if he wanted a coffee. I don’t know if the other things he says are as easy to understand, but it is nice to see him confident enough to talk anyway. He was relaxed and confident. We looked at the photos he had taken at the zoo and he was obviously interested in the animals and birds.

We had salmon, salad and small potatoes for tea, followed by a shared banana and some grapes. We watched Sherlock Holmes later. We don’t have our dining table in a position where we can eat tea and watch the news, something to work on.

On the way back home through Mt Lawley I noticed a Gelato stall in Walcott Street, on the corner of Beaufort, part of the Astor building. Unexpectedly cute. The photo was taken on my iPhone and processed (including cropping) in Snapseed.



Notes on our life

Yesterday Stephen saw the new cardiologist. He will have a stress echo test in a week or two, and see the cardiologist again afterwards. The cardiologist said that he doesn’t think the discomfort Stephen has is a blocked artery, considering all the walking we were able to do when we were away.

Then we waited almost all day for the air-conditioning repairers to arrive, and when they did get here after 4.00 p.m. they found a faulty part, which will take 7-10 days to arrive. And there are warm days forecast from Friday onwards. At the moment it is quite cool.

Today I had my first visit with Mum. We went to the bank and did a little shopping in Maundering. She wanted to have lunch there as she feels she is eating healthily all the time and wanted a change. We had bacon and egg toasties and coffee.

Before we went out Jamie came over. I told him about Stephen and he told me about finding gold, I won’t way where as he hopes to find more in the area he has been searching.

Mum looks well, her face is relaxed and she is letting her hair become straight. It still has some gold in it. I’m not sure how well she is eating. Of course, as the others warned me, she is having lots of short term memory problems, although her memory for the past is good. Her routines for living are helping her, I think. She knows her house and appliances well. We changed her bedsheets and put them in the wash, then the dryer. She can’t be bothered hanging them out. They were still a little damp after the dryer, but I put them on the clothes horse to finish drying and she understood this concept.

She seemed happy to see me and was mostly positive in her outlook. I guess it is early days for me to know how she is really going. Then, maybe time to get together as a family to discuss.

Tonight was lovely and cool and we went out for a walk after tea.

The Working Voices Choir from a few years ago. We start back in two weeks. I took this photo on the Nikon D800 with the Tamron 24-70 2.8 lens. Have to say that Bernard Carney set up the shoot by choosing the setting and getting us into position.

Keeping up to date

The visit from Matt went quite well. I had enough energy to make up for Stephen a bit. He is permanently in his powered chair, a challenge for us to manage, but sometimes it worked. Matt is still disconnected – I gather he will have training sessions.

He seemed a bit distressed later in the visit, and my attempts to reassure him did not really work. Stephen mentioned going to hospital emergency, I don’t know what Matt picked up, but he knows Stephen is unwell to some extent. However, he has also been a bit like this other times when we get back from a long trip, as though he has been holding on, and seeing us reminds him of ‘missing’. Whatever the reason, we can now offer regular visits and I hope he will soon feel more secure. Anyway, I enjoyed having him home very much.

This morning Stephen saw his GP regarding the results of the MRI. There appears to have been a small blockage or bleed, sounds like what they call a TIA. Not good. He got the referral to the cardiologist for tomorrow and John recommended he take the scans and report with him. The risk with AF is having a stroke – so it is related. Apparently the GP rang the radiologist who did the MRI – good follow up and makes up a bit for not taking the chest constriction, etc. perhaps seriously enough last week. He also said that the stress of the travel could have contributed to the problem.

Anyway, cardiologist tomorrow and neurologist 8th February, about 3 weeks away. Nothing more to do.

I will see Mum on Wednesday. She said that she doesn’t feel confident about driving to Mundaring, so I said I can take her shopping and drive her car so that it gets a run. We are concerned that she is forgetful, following the fall she had a few weeks ago. I feel rather torn. Jamie is visiting her more at the moment.

The photo was taken at Brighton Beach Saturday evening.

The reason why I say Stephen had a seizure on the 19th December is as follows:

He didn’t just collapse and become unconscious or semi conscious.

His whole body was jerking and writhing, his face was distorted, he was making a thrumming sound, quite loud. It went on for about 4 or 5 minutes, non-stop. It was terrible to watch. I have seen people have seizures before, and sometimes they are quite mild, the person just jerks a bit, then goes unconscious or sleeps. But this was a full what used to be called ‘grand mal’ seizure. If we had been out walking he would not only have fallen to the ground, he would have been jerking around uncontrollably and probably hurting himself even more than from the fall. It’s useless for anyone to try to hold someone in that state because you risk being injured by flying arms or legs.

After that time, he began to loll about, his muscles gradually relaxing, but still jerking strongly from time to time.

After about 20 minutes or so, he began to respond to people talking to him, but doesn’t remember any of that. It’s apparently normal to want to sleep, the body is absolutely tired out by what it has been through.

At the first hospital they tested for signs of a stroke or brain damage (testing reflexes, touching his nose, etc). This all checked out OK. By then he was conscious enough to answer some questions although he can’t remember being at that hospital at all.

At the second hospital they also tested him for signs of a stroke, again negative.

I demonstrated to the doctors what I had seen, they did not say ‘maybe it was a stroke’.

When the cardiologist saw us, he said that maybe a lack of oxygen in the brain triggered the seizure. They can be related events.

Stephen still has no signs of having had a stroke, apart from what they have found by doing an MRI. There is a recommendation to have another MRI in a little while.