Fading from Memory

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Sunday 29 October 2006

Starting up (a 5-month review)

By MP on Sunday 29 October 2006, 14:24

Here's an email I sent to my siblings on the last day of May this year. It was entitled 'M&D update'.

Greg, Rachel, Derek,

Yesterday the first social service was provided to mum and dad.

The background to this is that both mum and dad have had an ACAT (Aged Care Assessment Team) assessment, and are both deemed to be in need of aged care. For mum, this was the second assessment, Rachel having organised one over a year ago. Following the latest assessment, both mum and dad are now on the waiting list for Community Package (CP) which provides six hours assistance per week, in all areas (eg. shopping, cleaning, bathing, laundry, even outings). This has a nominal cost of $40, but it is subsidised in various ways, and modified in various ways, and it looks like mum and dad will pay less than this when the time comes. The waiting list is about 18 months.

In the mean time (recognising that mum should have been on the waiting list for months already, but for some reason was not) both mum and dad have been made eligible for Community Options (CO). This is a similar arrangement, except that it can be any number of hours per week, and services are provided by agents who tend to specialise. I do not know what the costs are. They seem to be just a rubbery as the CP costs.

Given that mum and dad are convinced that they don't need help, I've arranged for minimal assistance initially. As acceptance grows (as it did with meals on wheels) we can increase the degree of assistance. For now it is 90 minutes of general assistance every Tuesday. Yesterday this consisted of dusting. It was interesting that once the lady started dusting, mum joined in too.

CO seems as good as any place to start, but I get the impression CP is better in the longer run. My understanding is that one or two people do everything under CP, whereas CO is split across several agents each with their own idea of what they do and don't do. I think the fewer people mum and dad deal with, the better.

We may have had a slight communications breakdown yesterday. I had told social services that I think hygiene and nutrition are the two priorities, but the lady who turned up said she did not do domestic cleaning.  We may have a few bugs to iron out, but at least we have a foot on the first rung of the ladder.

Three pieces of advice I've received in regard to mum and dad:

1 - leave snacks around the house (fruit, nuts, sandwiches, biscuits, sweets) to encourage eating
2 - introduce Sustagen drinks into the diet to improve nutrition
3 - use a food dispenser for dried catfood to minimise the opportunity for human and cat food to be confused

I've tried 1, and it definitely works. I'll try the other two soon.

There are plenty of other things happening too. I can think of the following:

- Dad is going through tests to assess the effectiveness of an operation to fix his aortic aneurysm. The expandable stent method looks probable but the surgeon thinks dad is fit enough to undergo the 'open cut' surgery if necessary.

- Mum will be seeing a psychogeriatrician as soon as I can arrange a referral from her GP.

- An Occupational Therapist is visiting mum and dad tomorrow to assess whether any modifications to the house are required

- The local nursing home (Echelon) are going to invite mum and dad down for one of their social gatherings, and will try to make this a regular thing

- A regular Dementia Monitoring visit will start some time soon, though I do not know when, to chart the progress of Alzheimers for both mum and dad

- I have been given massive quantities of information, including a good book in Alzheimers. I shall be leaving all this in the filing cabinet at mum and dad's place when I've read it all

Cheers, Mike.

It is instructive to review the current status against this five-month old update.
  • I never managed to figure out what the differences between CP and CO are, either in costs or in services. We appear to have paid nothing anyway.
  • The 90 minutes of light help around the house didn't last more than a couple of weeks. It has been replaced by the carer staying with mum on Wednesdays when dad is not home.
  • Hygiene and nutrition are still my top priorities, and I think that I shall soon be hearing from our case manager on the former.
  • The three pieces of advice have had varied degrees of success. Food left in easily accessible places has to look like human food and not cat food, otherwise...well, you've guessed it. Sustagen drinks work nicely. Mum and dad seem to perceive them as quite a treat. As for the cat food dispenser - the jury is still out on that. On Thursday I found the two halves of it in different places in the kitchen. The dried cat food was in numerous (other) places, several of which were out of reach of the cats.
  • We are following a path of what Derek calls intelligent inaction on the aneurysm.
  • The psychogeriatrician ended up seeing both parents and prescribing Aricept for them. We think the benefits have been great for dad, good for mum. The nurses don't like dealing with mum, but may yet come around.
  • The occupational therapist visited and made recommendations for changes to the house. These have all been made.
  • The nursing home day care centre has, surprisingly, been a life-saver for dad, but a complete failure in mum's case.
  • The dementia monitoring service was withdrawn before it ever started. The rationale for this was that a care worker was visiting the house every Wednesday anyway.
  • I've read most of the literature, and now feel free to make my own judgements against its background.
I'd say overall things are not as bad as I sometimes think. We do appear to have made some headway in less than half a year.

2 comments

Saturday 28 October 2006

Misnomers

By Mike on Saturday 28 October 2006, 14:24

I have come to learn that our family is not unique in its inability to get each other's names right, but for a long time I thought we were. So frequently was I called Greg, or Greg-Mike, or Derek-Greg-Mike, or even Rusty-Mike (Rusty being a ginger tom cat we had in England) that I began saying:

'I'm Gr-mike, dad.' Then, pointing at Greg, 'And he's M-greg.' It's a strange phenomenon.

I remember when Rachel brought her fiancé Daniel around for Sunday lunch. We were all sitting at the dining table, and either Greg or I was messing around with something on our plate.

'Daniel! Stop playing with your food,' shouted dad.

Daniel nearly died of a heart attack on the spot.

'Oh, sorry. I meant M-greg,' said dad in a much softer voice. By now, whichever of us had been messing around had stopped. Dad was now lost for words, and concluded weakly, 'Gr-mike, just get on and eat your lunch.'

Greg and I grinned at everyone else, and Daniel took a few deep breaths.

Having my name mixed up with those of the family pets was particularly embarrassing when I had friends in the house to hear it. I think I simply got used to this family foible and came out of it better able to handle future manglings of my name.

Mum is now sometimes, though not always, quite stumped if you ask her her name. She can remember neither part of it on her bad days. When we were looking at the brain scans on Thursday I decided to capitalise on the fact that she was preoccupied with her name, printed on each scan. I pointed to dad's name.

'See that?' I said.

'Oh, yes,' mum nodded.

'How do you explain that, mum? He and you have the same surname.'

What followed was one of the most amazing pieces of confabulation and surreal incoherence I have ever heard from mum. Even at the time I wished I'd had a tape recorder. I'll attempt to recreate it here:

'Oh well. Yes! I had a... and the um...you know, both of them. We got a thing, all together. And a, and a church. The babies, all the babies. And my dad. We did going-going, all the. He said... and I did. And that was just what we did.'

I figured out that what she was talking about was getting married, going along with the change of name, and so on. She was quite animated, moving her hands and shrugging.

'So, what you're saying is that you're married?' I offered. As clear as anything she replied:

'Oh, people have been saying that for a long time.'

I had to laugh at how serious she looked. Dad was listening intently, and I had to keep his eye through this exchange so that he didn't interrupt. This is the big issue for him, of course.

'And then you had four children together,' I said to mum.

'Did I?' she asked.

'Yes, and I'm one of them.'

Are you?' she asked delightedly.

'Yes.'

'Oh, that's lovely,' she beamed, and patted me on the arm.

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Friday 27 October 2006

Brain scans

By MP on Friday 27 October 2006, 00:25

I went over to mum and dad's and together we looked at some of the family photos - their brain scans.

Mum was the first to have her head read. She had MRI images made on 27 September 2000. The reasons for this were rapid loss of memory and episodic falls. There was not much to see: no haemorrhage, no lesions, no age-related change. The phrase that I repeated to mum this afternoon was 'No significant intercranial abnormality is seen.' However, it is obvious that despite the lack of physiological evidence, things were not all right with mum. This period coincides with those mentioned by Rachel and Derek in which mum was noticeably more vague and forgetful.

She went back for CT scans on 11 February 2004. This time it was 'No focal intercranial abnormality is seen.' The crucial distinction between 'significant' and 'focal' is lost on me. The only development was that age-related changes were now evident, and one of these was an enlargement of the ventricles. The ventricles are the four quite large fluid-filled spaces within the brain. As brains atrophy, or shrink, three visible physical changes take place: they draw away from the inside of the skull, the folds in the surface of the cortex widen, and the ventricles enlarge. Mum's brain was starting to shows signs of atrophy, but not much.

The CT scans for dad were done on 29 March 2006. In the low-key language used by doctors to communicate with each other, the report said 'Age-related ventricular and sulcal prominence noted.'  This means that the ventricles and the sulci (the furrows on the brain surface) were widening. There were also signs of inadequate blood-flow (ischemia). Signs of atrophy were therefore more marked in dad than in mum.

A visual comparison shows that dad indeed has much more marked atrophy of the brain than mum does, despite his lesser mental deficits.

I got the scans out of their big envelopes and started taping them to the big window at the back of the lounge. Mum and dad gathered to look at the pictures and comment. Mum seemed to have a great time with this. She kept seeing funny faces in the images, clowns, poodles, etc. Dad looked at some of his own scans, 'I can't see a brain there,' he said, quite seriously. 'Now you have to face up to what people have been telling you all along, dad,' I said.

Putting matching slices from mum and dad together shows the difference. Dad's brain seems to be swimming in a lot of space, whereas mum's is still quite a fat-looking thing filling out the skull. I mentioned this. Mum was not sure whether I was insulting her. It probably sounded like I was calling her a fat-head.

So, back and forth along the window they shuffled. By the time they got to the end they'd forgotten what they'd seen at the beginning. Mum kept pointing to her own name, repeated on every one of her images. Dad kept marvelling at the science, technology, and imagination that produces images of things that are enclosed and unseen. I have to agree with him on this one. One of the more recent innovations is that images are also supplied on CD, with a customised viewer that allows you to do fly-throughs and rotations. I had some time to play with the viewer this afternoon, but I shall be taking it home with me for another investigation later.

It's the next best thing to having an ancestor's skull on my desk.

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Wednesday 25 October 2006

Snapshot 1996

By Mike on Wednesday 25 October 2006, 03:14

Well, more of the family are chipping in with their earliest memories of mum's dementia. Today I'm quoting from sections of an email from Rebecca, who is mum's first grandchild and also a researcher in ageing and dementia. When Rebecca speaks on the subject, we listen! This is what she has to say:

"I remember thinking that Grandma was a bit odd when Erica and I were visiting, repeating some stories and telling Erica all of her past - personal information included. Maybe she told everyone such personal things, I don't know. Maybe I'm doing what I believe clinical psychologists call 'indulging in a search for meaning' after the event - so I can't be sure."

The visit to Sydney that Rebecca is talking about, when she and Erica, a friend from university, were doing their round-the-world gap year trip, was 1996. Even though the time she is talking about was December of that year, this is a big step back from the 2000-2001 timeframe that Derek and I had been focusing on. She goes on:

"In any case, granddad phoned me before he and grandma came over to England in 2000, ostensibly to pass on information to dad about fly-screens and catches for doors, etc. that could only be bought in Australia. During this conversation he asked me what I knew about AD, what should be looked out for, etc. It seemed a bit odd at the time. When they were here there was definite confabulation and grandma's MMSE was 26, if I recall correctly. The clock drawing test was fairly poor, but note that at her age and with her level of education such an MMSE score may not necessarily be considered abnormal."

OK, well that agrees with what Derek recalls about the MMSE test, and also indicates that dad had been concerned about Alzheimer's disease before the trip to England in 2000. That suggests that Alzheimer's had been discussed amongst us here, and that it was more than just a casual discussion. It looks like dad was actively concerned. Rebecca concludes thus:

"I hope that helps. I think the range of survival is about 3-15 years after diagnosis. You are correct that the mean is quoted as 7 to 8 years, but of course diagnosis may come at different times for different people. On the effects of education: there is some evidence that it affects long term potentiation, i.e. it may help to strengthen neuronal pathways."

There is good news and bad news here. The promise of fifteen years between diagnosis and death is quite a long time, though there is no measure of quality of life either for the sufferer or their carers and, as Rebecca points out, diagnosis may come at either an early or a later stage. Education on the other hand is not something mum got a lot of; I think she had nine years in total. She is pretty high on some other risk factors too - she drank very little alcohol (a couple of glasses a day seems optimal) and she was of average fitness.

Well that is probably as far as our collective memory can stretch on this question. We shall just have to take it from here now.

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