This post was prompted by someone mentioning online that her husband is only able to blow his nose intermittently which is, of course, very frustrating. But it seems to me that this is the way that abilities mostly disappear - gradually. S hasn't been able to blow her nose for ages and prior to losing the ability it was very much hit or miss as it was also with, for example, spitting out teeth cleaning water or successfully negotiating stairs. I suppose at least when it starts to happen you can look at ways to compensate for the loss (if they exist!). So when the stairs are increasingly difficult it's time to look at stairlifts or moving downstairs. When an ability disappears suddenly it can be devastating. Following S's first fit she effectively lost her mobility in 48 hours and it has taken me months to accept this.
However abilities disappear, it's always a sad reminder of what else is to come. So I think it's all the more important to celebrate things that can still be done. For ten days or so, S has been more vocal than she has for many months. She's not making any sense but it's still somehow good to hear. Her first sounds this morning were "I know!" followed by made up words and unintelligible sounds. I haven't heard her say very much that makes sense apart from 'yes' 'no' or 'thank you' for a long time so it was quite a good way to start the day
Showing posts with label Language. Show all posts
Showing posts with label Language. Show all posts
Tuesday, 1 March 2016
Sunday, 7 April 2013
Generalisations about people with dementia
You find them all over the internet. Even when people pay lip service to the idea that 'everyone is different', they frequently state, suggest or imply that 'they' do this, can't do that, feel this, must be treated like this, cannot understand that....
The absurd thing is that those who make these statements will themselves often only have experience of two or three people with dementia. Either they are thoughtlessly extrapolating from this miniscule sample or, more likely, they're just repeating what they have read or been told by other equally misguided people.
I've mentioned before a couple of totally false assertions:
http://adventureswithdementia.blogspot.co.uk/2012/08/are-people-with-dementia-capable-of-new.html
http://adventureswithdementia.blogspot.co.uk/2012/05/if-i-hear-anyone-else-talking-about.html
Statements like this also ignore that the fact that people are often diagnosed at very different stages of whatever type of dementia they have (and some people claim that there are over 200). Many people in the early stages of the diseases will be able to do nearly all the things that people without dementia can do. Indeed, they may be able to do some of them better than most people without dementia. The writer Terry Pratchett is a well-known example. Several years after diagnosis, he is still writing books. Likewise, the singer Glen Campbell was able to produce a very polished album post-diagnosis.
For every celebrity, there will be thousands of other people who are still functioning 'normally' in some or many respects. People are still working, driving, and living independently.
I would advise people who want to try to understand the world of dementia to ignore any statement that lumps people together in the way that I've illustrated.
I'm not of course, denying that many people with dementia can have some things in common, just like people without dementia can. It's the absence of qualifiers - some, many, most - that gives the game away.
It's just sloppy thinking - on a par with talk of 'the poor' or 'the unemployed' - and often from people who should know better.
The absurd thing is that those who make these statements will themselves often only have experience of two or three people with dementia. Either they are thoughtlessly extrapolating from this miniscule sample or, more likely, they're just repeating what they have read or been told by other equally misguided people.
I've mentioned before a couple of totally false assertions:
http://adventureswithdementia.blogspot.co.uk/2012/08/are-people-with-dementia-capable-of-new.html
http://adventureswithdementia.blogspot.co.uk/2012/05/if-i-hear-anyone-else-talking-about.html
Statements like this also ignore that the fact that people are often diagnosed at very different stages of whatever type of dementia they have (and some people claim that there are over 200). Many people in the early stages of the diseases will be able to do nearly all the things that people without dementia can do. Indeed, they may be able to do some of them better than most people without dementia. The writer Terry Pratchett is a well-known example. Several years after diagnosis, he is still writing books. Likewise, the singer Glen Campbell was able to produce a very polished album post-diagnosis.
For every celebrity, there will be thousands of other people who are still functioning 'normally' in some or many respects. People are still working, driving, and living independently.
I would advise people who want to try to understand the world of dementia to ignore any statement that lumps people together in the way that I've illustrated.
I'm not of course, denying that many people with dementia can have some things in common, just like people without dementia can. It's the absence of qualifiers - some, many, most - that gives the game away.
It's just sloppy thinking - on a par with talk of 'the poor' or 'the unemployed' - and often from people who should know better.
Monday, 17 December 2012
Another conversation oddity
I've mentioned before that S's 'conversations' with imaginary 'friends' often make some kind of sense though they also contain a high proportion of nonsense words.
Then, every so often, from a stream of nonsense or half-sense pops a fluent and pretty complex sentence:
'Sorry love, it's not your fault but I would have liked to have done it.' (NB the use of the conditional perfect and present perfect tenses - I think!)
Extraordinary in its way. And this kind of thing is not uncommon.
Then, every so often, from a stream of nonsense or half-sense pops a fluent and pretty complex sentence:
'Sorry love, it's not your fault but I would have liked to have done it.' (NB the use of the conditional perfect and present perfect tenses - I think!)
Extraordinary in its way. And this kind of thing is not uncommon.
Tuesday, 21 August 2012
S's conversations - an update
In a much earlier post, I mentioned the nature of S's 'conversations' with her 'friends'. There have been some changes since then.
Generally, though they are still pretty repetitive, they are not so constant and she spends longer just sitting quietly, paying some attention to whatever is on the radio or TV from time to time, apparently quite calm and happy. She does get agitated, but not nearly as often or as dramatically as she used to and often the agitation, usually accompanied by walking up and down, is a signal that she needs something, the loo or a drink, e.g.
The conversations usually seem to take place in a school setting (she was a teacher). Sometimes she is the teacher and at others one of the kids. There's an awful lot of apologising: 'Oh...I'm sorry!' though it's not always possible to tell whether it is S or the person she is talking to who is doing the apologising. 'Oh God!' is another very common exclamation though these days it doesn't sound nearly as serious as it used to.
A lot of it concerns making arrangements: 'Tomorrow. We can go for a walk or something.' Misunderstandings also figure largely: 'Oh I see...I'm sorry', 'No! I said....'.
Sometimes a perfectly formed statement jumps out: 'Yes, it is good, but it's not half as good as it could and should be.' Where did that come from? Did someone say it to her sometime? Did she say it to kids? (Doesn't sound like her from what I know of her approach.)
I still find it tedious at times. But things could be, and have been, so much worse.
Generally, though they are still pretty repetitive, they are not so constant and she spends longer just sitting quietly, paying some attention to whatever is on the radio or TV from time to time, apparently quite calm and happy. She does get agitated, but not nearly as often or as dramatically as she used to and often the agitation, usually accompanied by walking up and down, is a signal that she needs something, the loo or a drink, e.g.
The conversations usually seem to take place in a school setting (she was a teacher). Sometimes she is the teacher and at others one of the kids. There's an awful lot of apologising: 'Oh...I'm sorry!' though it's not always possible to tell whether it is S or the person she is talking to who is doing the apologising. 'Oh God!' is another very common exclamation though these days it doesn't sound nearly as serious as it used to.
A lot of it concerns making arrangements: 'Tomorrow. We can go for a walk or something.' Misunderstandings also figure largely: 'Oh I see...I'm sorry', 'No! I said....'.
Sometimes a perfectly formed statement jumps out: 'Yes, it is good, but it's not half as good as it could and should be.' Where did that come from? Did someone say it to her sometime? Did she say it to kids? (Doesn't sound like her from what I know of her approach.)
I still find it tedious at times. But things could be, and have been, so much worse.
Wednesday, 7 March 2012
They should have seen her a few months ago
No doubt many people meeting/seeing S for the first time view her as someone with severe mental health problems. I've got used to our walking being constantly accompanied by her seemingly endless stream of conversation with her 'friends', much of it loud and agitated, but I can imagine that some of the people we pass find it unsettling. They would have found her behaviour even more disturbing a while ago.
On a bus, I'm even more 'on edge' about it. But it's encouraging that I can get her to reduce the volume when I feel it's getting anti-social. During the course of two bus journeys today, when she was talking - there were significant periods of silence - it was done so quietly that I doubt whether anyone noticed anything unusual. And this was without any intervention from me. So this is another thing that has improved.
Happily, it's not just me who sees improvements - I would start to doubt myself if it was. It's becoming very noticeable how everyone, including experienced professionals, who saw S back in the late autumn when she was going through the most difficult time, express surprise bordering on amazement when they see her now. People mention her calmness, her happiness, the fact that she looks so much healthier now that she regained some of the weight she lost and the fact that she clearly follows conversations much better, even though she often has difficulty making herself understood when she tries to participate.
Of course, everyone would like to know how this has been achieved. Join the club!
Naturally, I do have some ideas about this. I've mentioned some of them here. I'll try to pull all these ideas together in one post very soon.
On a bus, I'm even more 'on edge' about it. But it's encouraging that I can get her to reduce the volume when I feel it's getting anti-social. During the course of two bus journeys today, when she was talking - there were significant periods of silence - it was done so quietly that I doubt whether anyone noticed anything unusual. And this was without any intervention from me. So this is another thing that has improved.
Happily, it's not just me who sees improvements - I would start to doubt myself if it was. It's becoming very noticeable how everyone, including experienced professionals, who saw S back in the late autumn when she was going through the most difficult time, express surprise bordering on amazement when they see her now. People mention her calmness, her happiness, the fact that she looks so much healthier now that she regained some of the weight she lost and the fact that she clearly follows conversations much better, even though she often has difficulty making herself understood when she tries to participate.
Of course, everyone would like to know how this has been achieved. Join the club!
Naturally, I do have some ideas about this. I've mentioned some of them here. I'll try to pull all these ideas together in one post very soon.
Saturday, 21 January 2012
Repetitive conversations
As is often the case, I've spent much of the day listening to S's increasingly repetitive conversations with her 'friends'. Although what she says still usually makes a kind of sense, more nonsense words are creeping in. She'll scornfully correct someone who has got the name of one of the friends wrong, has said something that sounds a bit like the friend's name, maybe starting with a different initial letter. Quite often the conversations become fairly angry but then they will, sometimes quite suddenly, become cheerful and very polite, 'Thank you, thank you very much indeed!' She's also apparently learnt how to whistle. She used to say that she never could whistle but now she often produces a long low whistle - it's part of the conversation but it's not quite clear what the purpose is.
It's not all bad. If anything, her conversations immediately before she falls asleep are becoming more and more cheerful. She chuckles and sings, or hums. It's not a bad way to fall asleep for me, now that I've got used to it.
But I do find having to listen to the angry conversations very wearing. However, I read an exchange on an Alzheimer's Society forum where someone was complaining about the repetitive conversations and someone else responded that she used to feel the same but now that her husband cannot talk at all, she feels rather differently. I can still have some kind of conversation with S and I try hard to make the most of this.
It's not all bad. If anything, her conversations immediately before she falls asleep are becoming more and more cheerful. She chuckles and sings, or hums. It's not a bad way to fall asleep for me, now that I've got used to it.
But I do find having to listen to the angry conversations very wearing. However, I read an exchange on an Alzheimer's Society forum where someone was complaining about the repetitive conversations and someone else responded that she used to feel the same but now that her husband cannot talk at all, she feels rather differently. I can still have some kind of conversation with S and I try hard to make the most of this.
Wednesday, 11 January 2012
Patronising professionals
You could fill a blog with them. The latest one to use this particularly annoying example was a psychiatrist. 'And what tablets is she taking?' We've had it all before: 'Do the tablets suit her?', 'Is she happy with her tablets?', 'There aren't any tablets that can help that'. It's particularly inappropriate in S's case as she has the greatest difficulty in swallowing even the smallest tablets and either has to have medication in liquid form or crushed up. What's wrong with 'drugs' or 'medication'? I'm sure that this springs from an assumption that people with dementia, old people generally, and 'the masses' have to be talked down to and can only be expected to understand the simplest vocabulary. Do they use 'tablets' in discussion with fellow professionals? Of course not.
Also, there's an assumption that someone in S's position must be on a whole range of tablets. Happily, she is currently pretty stable and may almost have shaken off the worst effects of the last 'tablet' she was persuaded to take. I quite like the look of surprise, even shock, when I tell them that she's not on any medication.
Also, there's an assumption that someone in S's position must be on a whole range of tablets. Happily, she is currently pretty stable and may almost have shaken off the worst effects of the last 'tablet' she was persuaded to take. I quite like the look of surprise, even shock, when I tell them that she's not on any medication.
Tuesday, 20 December 2011
Trying to classify S's conversations
Following on from my previous post, I've tried to list all the different types of conversation:
1) With imagined people: You only hear her side of the conversation. Inbetween there is silence when she is 'listening' and then she will respond.The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.
2) With imagined people: You hear both sides of the conversation. The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.
3) With imagined people: You hear both sides of the conversation, though the other person's contribution often includes nonsense sounds or syllables, almost as if she can't be bothered to put too much effort in.
4) When following a conversation (with friends and family): she will contribute the odd word, phrase or occasionally sentence which is an entirely appropriate response.
5) When following a conversation (with friends and family): she will respond but what comes out is confused and seems to have little relationship to what is being discussed.
6) With me and her daughter, S will often have usually short but perfectly normal conversations. She rarely pauses to 'find' words and never uses the 'wrong word'.
7) Occasionally she will have longer conversations with me, again talking fairly 'normally'.
Most of the day now is spent on 1, 2, and 3 though obviously if friends and family are around a lot, there tends to be less of those conversations.
1) With imagined people: You only hear her side of the conversation. Inbetween there is silence when she is 'listening' and then she will respond.The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.
2) With imagined people: You hear both sides of the conversation. The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.
3) With imagined people: You hear both sides of the conversation, though the other person's contribution often includes nonsense sounds or syllables, almost as if she can't be bothered to put too much effort in.
4) When following a conversation (with friends and family): she will contribute the odd word, phrase or occasionally sentence which is an entirely appropriate response.
5) When following a conversation (with friends and family): she will respond but what comes out is confused and seems to have little relationship to what is being discussed.
6) With me and her daughter, S will often have usually short but perfectly normal conversations. She rarely pauses to 'find' words and never uses the 'wrong word'.
7) Occasionally she will have longer conversations with me, again talking fairly 'normally'.
Most of the day now is spent on 1, 2, and 3 though obviously if friends and family are around a lot, there tends to be less of those conversations.
Thursday, 15 December 2011
Something that calls out for research
Another puzzling thing, and one that you'd think might repay research, is the fact that when S is having her conversations with imagined people (we could call them hallucinations though I don't think she usually sees them) or just talking to herself her language is often lucid, coherent and complex. Yet when she is more 'herself' and trying to join in a conversation she often struggles to express herself and people listening usually struggle to make much sense of it.
Of course, some of it may be to do with familiarity and repetition - many of her conversations are constantly recycled - but new variations and new topics do come along and she is equally sure-footed with them. It may also be that in some way she feels more in control - she is after all she is making up both sides of the conversation. Another strange and interesting thing is that sometimes there's a silence whilst she's listening to the 'other person' but sometimes she does both sides of the conversation.
I'm wondering if it's ever occurred to people to study this strange phenomenon?
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