Deja vu ...

These images were taken over my last three visits, but that is not where the deja vu comes in. Rather that comes due to the similarities developing between Barry's aged-care life, and the aged-care life of our father. Dad went into care in November 2007 at the age of 86; whereas Barry went into care in December 2011, at the age of 67. But, I guess, dementia is dementia. At one stage I had hopes of getting more information about the exact nature of Barry's medical condition. This proved to be illusory. After he jumped the shark the last time, he was sectioned into the Mater in Newcastle, and was short-listed for a psycho-geriatric assessment by their roving team. I eventually read he report, which was based upon an interview conducted in the courtyard at Catalina. I could have written the report myself: sit on the fence, don't say anything that can be disputed; don't say anything definite. A bit like the school reports children seem to receive nowadays! They did not see him psychotic, therefore it was not mentioned in the assessment. And I thought it might include objective medical imaging like an MRI of his brain, but no such luck. So there will be no information forthcoming about the mix of dementia, psychotrophic drugs, and stroke that go to make up his 'condition'. However, his is on a daily dose of Risperdol to reduce the likelihood of more 'sharks' upon the horizon.

So what are the behaviours that lead me to mutter 'deja vu ... bloody bin here before'? Yesterday, when I arrived I could not find him anywhere, until Pauline (an OT) bellowed from the activity room, 'He's taken himself back to bed, Julie'. In I barge into a darkened room at 10am where a fully clothed shape has the covers clutched around his neck. As soon as I heard his intake of air, I knew the scenario about to unfold before me. 'Oh, dear, it is so good to see you. I thought you had died and I was all by myself from here on out.' 'Well, not quite. But if there WERE to happen, then Ross would visit and tell you'. 'Ross. Ross! But he's been long gone ... '. It's hard not to smirk. Dad was the same way. He believed the voices in his head, too. Amd time seems to pass differently for them, than for me. Sometimes it must speed up, whereas other times it must just plod along at a snail's pace. But, I took him outside, and we gardened.

The other similarity with our father, is that it is becoming increasingly hard to cajole Barry into doing anything. He never suggests anything. He finds reasons why such-and-such should not happen today. Gardening should not occur as it is too hot, or there is already too much in the garden bed. Painting/drawing should not occur because his head hurts or he cannot think of anything to paint. And then he will tell me how bored he is. And that the Awaba Men's Shed has finished, which is just as well as he was the only one who ever went there. How does one explain that it has shut down over the summer break, and that he was just the only one from the aged-care home! The garden is my saviour. I understand it is there more for my sanity than for his. I suspect he does nothing in it except for Fridays. He is happy to do the simple tasks that I suggest to him. However, it is easier to get him to spray with the hose than to pick up all the debris fallen from trees, where he cannot see what I can see. But the zucchini is coming on a treat, and there are some snap peas potted ready for a trellis to climb up - that is next week's task. A note on the photographs I left the first image in colour rather than convert to B&W, so you can see how ruddy he is now appearing. I know he takes his BP medication, but it is becoming increasingly raised. I will ask next week if his medication should be upped. Margaret proposed to Baz yesterday, and he said he had to think about it. I would think that Margaret's current husband might have to think about it, too. There are times when she is very good, but yesterday she said her name was her maiden name, and that her mother was definitely still alive. But, all in all, they are lucky to have each other.

His memory is sketchy ...

Another visit up with my brother, Barry, today. He is always so pleased to see me, and has no idea that he sees me each week. To start with today, we spent an hour and a half, rearranging and hanging all the photos and art-works in his room. However, I still forgot to take a photograph to show you. I was too busy, I guess. Then we set to with his computer, which I am convinced he only uses when I am there. Once again, we did a 'paint by numbers' exercise, with a bit more of the negotiating around the program. And another hand of Solitaire, which he is being able to do more by himself now.

Then, a bit after 10 o'clock, we set out on our excursion, having declined to go on the facility-wide excursion in their bus. Barry and I armed ourselves with drawing paper, a range of HB pencils, a sharpener, and something to lean on, and headed off down to the lake. Although he said he could not remember, when we were kids, the three of us (Ross included) used to take similar equipment out into the paddock to sketch - fence posts and the like. However, today, I knew what I wanted to lock into Barry's brain; and that was the scene of the small row-boats pulled up to the edge of the lake. The sun was glorious, and we happily sprawled on the grass for just over 30 minutes, each absorbed in our own project. I will see if I can find two camping stools (with x members, and canvas sling) to make our posture a bit more comfortable. The ground is a very long way down for yours truly! Upon our return, we went to Barry's garden which is coming along a treat. He reckons he doesn't want to hog the garden incase another resident was disinclined to be involved. However, when I suggested that the succulents could perhaps survive out in the sunshine, he quickly returned them to where HE wanted them. The nurse and I had to smile. I tried to impress upon him, that now that he had sketched his row-boat, he could consider translating that into a painting. I showed him other paintings around the walls of the facility, many of which had boats as their subject. I really don't expect him to have started this until I stick my head in the door again next week.

Stasis

This week Barry neither lowered himself out a tight window, nor bounded over a six foot fence. Indeed, all was quiet. One of the sobering moments of living with someone who has dementia, is the realisation that you are actually waiting for it to get worse. The hardest time is when they have moments of organised, reflective thought when they remember their previous life and the detritus they no longer have around them. It is only for a brief, shining moment ... and then the slide back into the greystorm resumes. Today Baz was quite good. Or perhaps it was that I had more patience. No no. I think it was that he was more settled. He has been in his own, single room for 8 days now. He can close the door. He has HIS things on the wall. He has his own television. He has his won computer. Today I showed him how to turn the television on and off, and where to sit to maximise the quality of the picture. He indicated he could not hear it very well, yet did not want the volume up because it might disturb others. Iasked if he would like a set of head-phones and that was a positive. I will find a way of hanging them up on the wall to keep them away from 'sticky-fingers'. The taxi-driver, Reg, now picks me up from Fassifern Station when the train gets in at 8:34am and I am out at Catalina a bit before 9am. Reg arrives at 12:30pm for the return journey to Fassifern to meet the 12:56pm inter-city train to Central. This gives me time to unwide, as the time in the home requires a lot of self-control, hail-fellow-well-met, and, surprisingly, acting.

Today, Barry and I mooched around in his room till just on 11am, so well-nigh two hours. I checked on how he was feeling about his lodgings. He said he guessed this was his home now, but wondered (fleetingly) what had happened to all the stuff he used to have. This is where the self-control came in. He had the blanket I gave him last week folded double on his bed, and was in raptures, even though the entire facility is air-conditioned to buggery! It turns out, that it was not warmth that he was lacking but WEIGHT! I think, with the private room, and the extra weight, he is sleeping longer, and hence the early morning heebie-jeebie are not as fearsome.

I put up more family photos for him, and have an idea of more for next week. I shall try to take photos of his room to let you all see. I also put up some posters of Monet and Picasso. It was while I was doing this, that he started to talk about his painting. He wondered where his gear was that he used to have. Hey prsto! In his cupboard. I brought it all out, and we set up an artists 'table' for use from his comfortable chair. Robyn got him a small easel. He worries constantly about other residents coming in and helping themselves to things. So we put the painting table behind the door. They do come in, and swear blind this is their room. They do take things. They do deposit things. They are demented. This is what people with dementia do. It is not stealing. However, Barry is convinced all the others are only demented when it suits their purposes. This is where both self-contol AND acting come in.

I tried to talk him into starting another canvas on the spot. But he insisted that he needs to work it out in pencil first ... and he did not want to do that today because his sister was visiting. Talk about being hoist on petards. So, I got him to turn on the computer. No matter what I do with the password, he cannot remember it, or remember where he put it. But he cannot read anyway, so shall ask my nephew if it is possible to remove the Windows password requirement. I got him onto a paint-by-numbers programme. It was a bit fiddlely this particular one, but shall try another next week. He got the hang of it and did not appear bored. Then we moved onto the card game, Solitaire. I am not sure he could do this without someone assisting over his shoulder. But shall do it again next week. Will try to remember to take him a Daily Telegraph next week. Has a good sized font, low comprehension age, and lots of photographs and drawings.

He kept on explaining to me how the nurses could attach connected 'bolts' to the door, so that the demented people could not work out how to enter his room. His room is at the end of the 'ambling' corridor so there is often a traffic jam outside.

Baz keeps on repeating 'Anyway, it's good to see you again, Sis'. When this becomes his main line of converstation, I know it is time to take him for a walk. So he got his cap - his large sunhat has gone missing again - and we ambled out into the sunshine. We actually did not go far this time, but mainly talked. He responded, in a fashion to many of my prompts. I find it fascinating that someone with a brain injury, which is akin in its effects to vascular dementia, has the ability to embroider a story so well. There are some stories he tells, where I do no have recall of the facts as I was not involved. However, he was telling me about his time in the RAAF, his posting to Woomera, and the process of his leaving the airforce. His story bears little or no resemblance to the facts as I experienced them. Nothing about going AWOL, living incognito, below the bread-line in Tasmania for most of 1966. Nothing about being picked up by the Military Police and being incarcerated in Holdsworthy until released by the Minister of Defence, Fairhall, after a special plead by the Archbishop of Newcastle, Housden. We sat on a bench, with the lake before us, and a walking path snaking past. Three kookaburras scavannged for worms from overhanging branches of the dying gum-trees. He talked and I listened. At midday, we moseyed on back, and went to check out his pea seedlings. And there has been progress with the garden. He now has a range of pansies, and geraniums and primulas planted (hence the dirty fingernails). He is putting the peas haphazardly in between, but what the heck.

So, it is progress of a sort. I must endeavour to keep my goals within the realms of possibility. If he is not jumping fences, then I guess my goals are achieved.

Baz does Pablo

Barry got started on this head a la Picasso three weeks ago, and I posted on it immediately thereafter. This is how it started, and how it is now. He is not happy with it. He tried to explain, but I am happy with it. I am happy with the output, but I am happier with the effort. He wants to make some changes to the outline. He tried to explain to me the brushes he would need. Smaller than 1 apparently. And maybe sponge rather than hair. I will have to talk with someone in an art supply shop and get the closest we can manage. I left two more canvases of this size, to see if he can move onto another project. He has one in mind. A head from his mind, not from Pablo's mind.

Have you ever seen him happier than this? I am not sure that I ever have.

Now I agree that there is a consequence of stroke where patients are unable to control their emotions and uncontrolled laughter can ensue. We have seen this a couple of times, and it is disconcerting. However, Margaret accounts for some of this joy on his face, too. I think.

I met Margaret last time. But she did not come with us last time. She did this time. Last time Barry whispered that he thought he had a girl-friend. This time they were affectionate in public. And everyone in the facility is overjoyed. Well the workers at the coalface. I guess they know how these 'romances' start and how they end, and how to salve wounded hearts.

At least we won't have to worry about his absconding. Not until they break up, at any rate ...

The long haul back at Catalina

On Monday this week, Ross, Robyn and I drove Barry from Port Macquarie Hospital down to the Catalina Aged-care Facility at Rathmines, on Lake Macquarie. He looms large in our history doesn't he, Lachlan Macquarie?

If you recall, after Barry's stroke at the end of October, he spent a week in Port Base hospital, three weeks undergoing rehab in Wauchope District Hospital, then, after minimal progress at rehab, he was admitted as a High Care resident into the Bundaleer Nursing Home in Wauchope. He absconded from there in the middle of January, and upon his return was admitted to Port Base hospital again. I agree. Old people in need of ongoing care, should not be occupying a bed in a hospital which may be needed for more emergency care.

So, the excellent social worker at Port Base, helped me find a longer term solution.


Ross and I had agreed to keeping Baz within the Wauchope area, because that was what HE wanted. He has many friends up in the area, had lived there since the late 70s, and liked the rhythm of the place.

However, he now agreed to come a bit further south, which helped us, but also there were very few places in the area that could accommodate him in a secure dementia faciltiy. Thursday last week I interviewed this facility which is on the site of the WW2 RAAF flying boat base. Hence, Catalina. It is older. It is more of a rabbit warren. It is within the City Rail zone, and although I have to train and then double bus, it is achievable from Sydney within one day. And it was available. Immediately. He does not have his own room, but is in with two other chaps. Both named Kevin. Bloody name haunts us now!

We settled him in during the early arvo last Monday, whilst he toured his new home and chatted to the Activities therapist. I promised him I would return today. Which I did. And for the first time since October, I am feeling a bit more upbeat. Not hopeul, but not depressed either.


I have spent the last three days making two 'books' for him. The first is a photograph album with examples from over the years, blown up and labelled, with his photograph on the front to attract his attention. I left it on his bedside table, and will go through it with him when I go up again next Thursday.

I am trying to chat individually with each of the Activities Therapists you see. There are two of them, and another comes on stream in a wee while. They used to be Occupational Therapists, then they were Diversionary Therapists. I no longer know. Let's call them the ATs. One is Kate and the other is ... can't remember (Nicole).

The second book I have made this week involved tearing pages out of my Picasso book. Oops ... good cause. I tore out about 20 large prints which I liked and thought Barry might also like. Big bold lines, and big bold colours. I put each on a coloured sheet of A4 paper and slipped it into its own plastic sheet in a folder. I labelled and dated each picture.

Ross and Robyn, and Jan and John (friends and neighbours from Rollands Plains) had stocked him up well with painting gear and with drawing gear. I had the task of trying to motivate him, and cajole him into drawing/painting again after all these years.

I took Kate aside and told her my plans for 'resident centred care' and she was wrapt (?sp?). I said he would need his own area with a table and a chair, and he would need to be able to store the gear for each of the activities I have dreamt up. In addition to the painting, we will have a box for leatherwork and another box for woodwork. We started off in a courtyard in the sun, but even with his big hat (thanks Jan - it works a treat and looks the part!) we had to move him under cover. Which means it can be an all-weather activity. When he moves into his leather work we might need a bench that can take a pounding. But shall cross that bridge later ...

I think today might have been a big day. When I arrived a bit after 11am, he had just finished an Anglican church service, and was sitting in a group watching a Laurel and Hardy film. We did all the painting after his lunch, so I guess that was about 1pm and I left to catch the train at about 2:45 pm. So he concentrated big-time for about an hour and a half. He did resist a bit to begin with. His head was warm on the inside. He had pain. He would think about getting back into painting. Da da da da da da ... I started to explain that his head being warm might be because I was asking him to concentrate and perhaps the blood was starting to flow back into the parts that the stroke had damaged. Or at the very least find new ways to move around his brain. And surely that could only be a good thing. I think there was an element of fear of failure in there, too.

Now comes the hard part. Keeping it going from week-to-week. And keeping it going when I am not there.

In case you were wondering, the Picasso picture is a self-portrait completed in 1972 when Pablo was 90. He died in April 1973.