http://socialinvestigations.blogspot.co.uk/2014/03/compilation-of-parliamentary-financial.html
The number of politicians mentioned in this one blog post is staggering.
There are probably many more.
Tuesday, 11 March 2014
Wednesday, 5 March 2014
A sense of achievement
Being a carer is stressful, even when the person you care for is as amenable and calm as S. When I talk to other carers it's clear to me that some of them, like me, are helped to keep going by trying to solve the problems that the condition throws up or those that arise when you try to lead as normal a life as possible.
For example, people ask me why I continue to take S away in our camper van, especially as we have gone abroad at least once each year even since she was first referred to the memory clinic and we still do this. First, of course, I have to say that I wouldn't do it if S objected. But not only does she not object, I am sure that, like me, as well as still being able to enjoy aspects of the whole experience, she feels a real sense of achievement and often smiles and gives other signs of satisfaction when I'm talking to other people about our adventures.
Another example: I never expected to be writing about bowel habits on this blog but.....move away now if you are offended. I always describe my wife as doubly incontinent as that is how she would be described medically, and the continence specialist to whom we were referred assumed that this would now be a permanent symptom of the condition. Urinary incontinence usually strikes first and those who believe in 'the stages of dementia' put it in the later stages and remark that late stage dementia often involves double incontinence.
I've always thought it odd that for S things developed the other way round. Like so many people, S had a longstanding tendency towards constipation. So when, three years ago, she started to have soiling problems, we used any number of laxatives and other drugs which various medics swore by. They turned out to be worse than useless. They simply complicated the issue and, whatever dose of whatever drug you used, you never really knew if there was any progress. Sometimes there seemed to be, but then you were suddenly back to square one.
Fast forward three years. For weeks now, there hasn't been a problem. S has emptied her bowels around 4 times a week and is completely clean all the time, i.e. 100% goes down the pan. This hasn't been achieved suddenly of course. There have been false hopes in the past but overall things have gradually improved over time.
How has this been achieved? I expect that this is what some carers reading this will want to know. So these are my tips, mostly discovered by trial and error:
1) Regular exercise, e.g. we aim to walk at least 5 miles a week whatever the weather and we usually exceed this target.
2) Vegetables are very important. We tend to eat a lot (we don't eat meat). Some vegetables are extremely effective - carrots, sweet potatoes, squash, onions all work well for S so I concentrate on these every second and, if necessary, third day.
3) Insoluble fibre, particularly wheat bran and anything that contains it, has to be treated with caution as it can have exactly the same unwanted effect as the drugs.
4) Soluble fibre, in particular oat bran, is great and much of the improvement can be traced back to when we started to have porridge for breakfast - real porridge not instant refined muck.
5) We discovered that immediately after the evening meal was the optimum time for a successful visit to the loo. If there is no result at first, I have found that a fruit dessert, e.g. apple crumble, nearly always does the trick.
6) Before every meal I give S fruit finger foods - mango, melon, apple, pears. I've always understood the importance of fruit but this fairly recently introduced tactic means that S eats more fruit than she did before.
7) Obviously, it's also important to keep hydrated and this is sometimes difficult - S has to be watched to avoid spills and she sometimes drinks very slowly.
I'm sure none of the above is particularly novel. And what has worked for S may not work for others but I hope that they may be of some use to someone.
Now I'm turning my attention to the urinary incontinence though I reckon this will be an even harder nut to crack, especially as S has used pads for so long
For example, people ask me why I continue to take S away in our camper van, especially as we have gone abroad at least once each year even since she was first referred to the memory clinic and we still do this. First, of course, I have to say that I wouldn't do it if S objected. But not only does she not object, I am sure that, like me, as well as still being able to enjoy aspects of the whole experience, she feels a real sense of achievement and often smiles and gives other signs of satisfaction when I'm talking to other people about our adventures.
Another example: I never expected to be writing about bowel habits on this blog but.....move away now if you are offended. I always describe my wife as doubly incontinent as that is how she would be described medically, and the continence specialist to whom we were referred assumed that this would now be a permanent symptom of the condition. Urinary incontinence usually strikes first and those who believe in 'the stages of dementia' put it in the later stages and remark that late stage dementia often involves double incontinence.
I've always thought it odd that for S things developed the other way round. Like so many people, S had a longstanding tendency towards constipation. So when, three years ago, she started to have soiling problems, we used any number of laxatives and other drugs which various medics swore by. They turned out to be worse than useless. They simply complicated the issue and, whatever dose of whatever drug you used, you never really knew if there was any progress. Sometimes there seemed to be, but then you were suddenly back to square one.
Fast forward three years. For weeks now, there hasn't been a problem. S has emptied her bowels around 4 times a week and is completely clean all the time, i.e. 100% goes down the pan. This hasn't been achieved suddenly of course. There have been false hopes in the past but overall things have gradually improved over time.
How has this been achieved? I expect that this is what some carers reading this will want to know. So these are my tips, mostly discovered by trial and error:
1) Regular exercise, e.g. we aim to walk at least 5 miles a week whatever the weather and we usually exceed this target.
2) Vegetables are very important. We tend to eat a lot (we don't eat meat). Some vegetables are extremely effective - carrots, sweet potatoes, squash, onions all work well for S so I concentrate on these every second and, if necessary, third day.
3) Insoluble fibre, particularly wheat bran and anything that contains it, has to be treated with caution as it can have exactly the same unwanted effect as the drugs.
4) Soluble fibre, in particular oat bran, is great and much of the improvement can be traced back to when we started to have porridge for breakfast - real porridge not instant refined muck.
5) We discovered that immediately after the evening meal was the optimum time for a successful visit to the loo. If there is no result at first, I have found that a fruit dessert, e.g. apple crumble, nearly always does the trick.
6) Before every meal I give S fruit finger foods - mango, melon, apple, pears. I've always understood the importance of fruit but this fairly recently introduced tactic means that S eats more fruit than she did before.
7) Obviously, it's also important to keep hydrated and this is sometimes difficult - S has to be watched to avoid spills and she sometimes drinks very slowly.
I'm sure none of the above is particularly novel. And what has worked for S may not work for others but I hope that they may be of some use to someone.
Sunday, 23 February 2014
Looking Back
I was recently looking through my wife's last filofax because I needed her national insurance number. She used the filofax very successfully for a few years to help her keep organised and to remind her of things she needed/wanted to be able to remember. I didn't find the NI number there, but I did find all sorts of details that she'd jotted down over the years (we replaced the dairy pages each year in the leather case but kept all the other pages). The handwriting ranges from normal (she had lovely handwriting) to scrawls that were very hard to decipher and often contained repeated letter and syllables.
Amongst the things she wanted to remember are family birthdays then (later) family names, her daughters' favourite animals, places where she lived and worked, etc. Reading these notes, or just thinking about them, brings tears to my eyes.
Perhaps the most moving notes are references to her youthful travelling adventures. At the age of 18 she did VSO in Ethiopia and was introduced to Emperor Haile Selassie! She also drove coaches overland to the Soviet Union.
The things she was trying to remember are amongst those that make us who we are. No wonder she wanted to cling on to them.
Now, needless to say, she cannot drive, read or write, and her conversation is very limited. But, perhaps because of her personal history, she still gets some pleasure from travel, despite all the difficulties she has to overcome.
You can look back at the earlier phases. Difficult as they were to come to terms with at the time, you would give anything to be back there now.
Of course, we are both lucky. My wife is generally calm and contented. She is physically healthy. I am deeply affected by some of the stories I read online from people who are not so fortunate.
But, for all those affected, it's a horrible disease. And to see aspects of the person disappearing is perhaps the hardest thing.
Amongst the things she wanted to remember are family birthdays then (later) family names, her daughters' favourite animals, places where she lived and worked, etc. Reading these notes, or just thinking about them, brings tears to my eyes.
Perhaps the most moving notes are references to her youthful travelling adventures. At the age of 18 she did VSO in Ethiopia and was introduced to Emperor Haile Selassie! She also drove coaches overland to the Soviet Union.
The things she was trying to remember are amongst those that make us who we are. No wonder she wanted to cling on to them.
Now, needless to say, she cannot drive, read or write, and her conversation is very limited. But, perhaps because of her personal history, she still gets some pleasure from travel, despite all the difficulties she has to overcome.
You can look back at the earlier phases. Difficult as they were to come to terms with at the time, you would give anything to be back there now.
Of course, we are both lucky. My wife is generally calm and contented. She is physically healthy. I am deeply affected by some of the stories I read online from people who are not so fortunate.
But, for all those affected, it's a horrible disease. And to see aspects of the person disappearing is perhaps the hardest thing.
Sunday, 16 February 2014
Madness
I've read online about a disturbing way in which multiple drugs are sometimes prescribed for people living with dementia.
This is how it goes, based on an actual example. The first drug is prescribed to deal with dementia symptoms. The person then becomes violent. A drug to reduce the violence is prescribed in addition. The person now starts having frightening hallucinations. A third drug is added, an anti-psychotic which causes the person to become zombie-like.
Now, if the first drug has clearly not worked in the way it should have done - which is often the case - surely the obvious, sensible, logical thing to do is to stop it.
Instead, the situation is complicated and compounded by the addition of another drug which also worsens the situation. And then another drug is added. Which worsens the situation further.
I wonder what the record is for the number of drugs prescribed in this kind of sequence?
Monday, 27 January 2014
Suffering from dementia?
As you will have gathered from my previous post, I don't believe my wife is suffering now. Of course, if her pre-dementia self could see her now and realise all that has been lost, it would be very distressing - to her pre-dementia self (as it is for me if I think about it). But as she is now, she isn't aware of what she has lost so isn't distressed about that.
This article by a person living with dementia questions the common usage 'suffering from dementia':
http://www.thanksforthememory.org.uk/announcements/living-with-alzheimer-s-not-suffering-with-it
I think such articles serve a very useful purpose in reminding us that not all people living with dementia suffer.
However, it is clear that many do. And certainly there have been points during my wife's journey when she has suffered, as my earliest posts demonstrate.
This article by a person living with dementia questions the common usage 'suffering from dementia':
http://www.thanksforthememory.org.uk/announcements/living-with-alzheimer-s-not-suffering-with-it
I think such articles serve a very useful purpose in reminding us that not all people living with dementia suffer.
However, it is clear that many do. And certainly there have been points during my wife's journey when she has suffered, as my earliest posts demonstrate.
Thursday, 23 January 2014
Contentment
This is a word that several people, professionals and others, who know or have observed my wife have used in relation to her general mood. I have to agree that is usually sums her up. And I'm very grateful for it and pleased for her.
But of course such a state has come at a price. When she was tormented and frustrated by hallucinations and by her inability to cope with some of the basic tasks of everyday living, there were still many times when she was able to articulate what she was feeling - whether bad or good - and relate meaningfully to other people, including me. It's not that these abilities have disappeared entirely - it's still possible to understand what she is feeling from her body language, behaviour, the occasional few words and even by getting the gist of her mixed up 'conversations' where made up words now predominate though there are sometimes perfectly sensible phrases and even sentences (even if you ignore the words, the patterns of the conversations, the intonation and the emphases, can also be revealing).
She has a new granddaughter about a month old. I think she understands this, and she smiles a lot when we are talking about the baby and when she is holding her. But then she smiles a lot anyway.
It saddens me enormously that her grandchildren will never really know the person who raised their mothers, and whom I fell in love with.
But of course such a state has come at a price. When she was tormented and frustrated by hallucinations and by her inability to cope with some of the basic tasks of everyday living, there were still many times when she was able to articulate what she was feeling - whether bad or good - and relate meaningfully to other people, including me. It's not that these abilities have disappeared entirely - it's still possible to understand what she is feeling from her body language, behaviour, the occasional few words and even by getting the gist of her mixed up 'conversations' where made up words now predominate though there are sometimes perfectly sensible phrases and even sentences (even if you ignore the words, the patterns of the conversations, the intonation and the emphases, can also be revealing).
She has a new granddaughter about a month old. I think she understands this, and she smiles a lot when we are talking about the baby and when she is holding her. But then she smiles a lot anyway.
It saddens me enormously that her grandchildren will never really know the person who raised their mothers, and whom I fell in love with.
Sunday, 12 January 2014
Well worth reading
Here's a link to an article by Sally Magnusson about her mum's dementia:
http://www.theguardian.com/society/2014/jan/11/losing-mother-dementia-sally-magnusson
It's beautifully written and very moving.
http://www.theguardian.com/society/2014/jan/11/losing-mother-dementia-sally-magnusson
It's beautifully written and very moving.
Friday, 10 January 2014
Couldn't help smiling
S's 'conversations' now contain many more made up words and sounds than they used to. But you still hear 'proper' word, phrases and sentences mixed in with the made up stuff and, if you ignore the words/sounds (which is difficult) the ebb and flow of 'proper conversation' are very evident.
The other day I 'tuned in' at a point when S had stopped for a bit and was 'listening' to the other person in the conversation. Then I heard a chuckle and 'I knew you were going to say that!'
I'm sure that, before dementia struck, S would also have found this amusing.
The other day I 'tuned in' at a point when S had stopped for a bit and was 'listening' to the other person in the conversation. Then I heard a chuckle and 'I knew you were going to say that!'
I'm sure that, before dementia struck, S would also have found this amusing.
Thursday, 9 January 2014
Back to normal
Regular readers will have seen that I have not posted on the blog since November. This is because, in addition to all the usual Christmas and New Year stuff, I have been rather preoccupied with a health issue of my own. It has now been resolved, I'm glad to say. But it has been hard to concentrate on my normal activities. As you may imagine, dealing with this kind of thing is that much more taxing when someone is dependent on you.
And this experience has brought home to me just how dependent on me S is. A health problem that could mean a stay in hospital is a nightmare for a carer. As there was a realistic possibility that I would need in-patient treatment, I have had to think about what arrangements would be needed in such a case and how these might affect S. Whichever way I looked at it, it was be very complicated and none of the possible scenarios would have been, it seemed to me, without risk to her present and future well-being.
I am now hoping that I can gradually build on the information I've gathered so that, if I'm in the same situation again, I will at least feel better prepared.
Anyway, normal service has now been resumed.
And this experience has brought home to me just how dependent on me S is. A health problem that could mean a stay in hospital is a nightmare for a carer. As there was a realistic possibility that I would need in-patient treatment, I have had to think about what arrangements would be needed in such a case and how these might affect S. Whichever way I looked at it, it was be very complicated and none of the possible scenarios would have been, it seemed to me, without risk to her present and future well-being.
I am now hoping that I can gradually build on the information I've gathered so that, if I'm in the same situation again, I will at least feel better prepared.
Anyway, normal service has now been resumed.
Sunday, 24 November 2013
Rehabilitation
Many people will scoff at the idea that rehabilitation of dementia patients is possible. I think we can all agree that 'restoring' a person to their pre-dementia state is currently impossible and likely to remain so for a very long time.
In any case, recent publicity suggests that, even non-dementia conditions like brain injury and stroke where people are sometimes helped to regain and, in some cases, all of the abilities they have lost, those professionals who are 'caring' for them are sometimes untrained in the techniques of rehabilitation. It seems that some people who could and should be rehabilitated are left alone, to decline further:
Secret filming highlights poor care of brain injury victims
So it's no wonder that those whose responsibility is to care for and treat people with dementia sometimes seem to do very little even to help ameliorate physical symptoms which may or may not be a direct result of the dementia. I have been reading online accounts of carers who have removed their partners from care homes and achieved surprising physical improvements which are clearly good in themselves but which may also have a knock-on effect in terms of the dementia.
One such carer is writing a book about his experience. He has 'before and after' photos which clearly show a dramatic improvements in his wife. If he is able to find a publisher, his book deserves to be a best-seller.
In any case, recent publicity suggests that, even non-dementia conditions like brain injury and stroke where people are sometimes helped to regain and, in some cases, all of the abilities they have lost, those professionals who are 'caring' for them are sometimes untrained in the techniques of rehabilitation. It seems that some people who could and should be rehabilitated are left alone, to decline further:
Secret filming highlights poor care of brain injury victims
So it's no wonder that those whose responsibility is to care for and treat people with dementia sometimes seem to do very little even to help ameliorate physical symptoms which may or may not be a direct result of the dementia. I have been reading online accounts of carers who have removed their partners from care homes and achieved surprising physical improvements which are clearly good in themselves but which may also have a knock-on effect in terms of the dementia.
One such carer is writing a book about his experience. He has 'before and after' photos which clearly show a dramatic improvements in his wife. If he is able to find a publisher, his book deserves to be a best-seller.
Saturday, 16 November 2013
The most widely read posts on Adventures with Dementia
I thought readers, particularly new ones, might find this list useful:
Cameron: 'It's a disease!'
More about HSV1 and beta amyloid
More about the possible relationship between the Herpes Virus and Altzheimer's Disease
A Herpes Vaccine may help
Now this could be a bit of a breakthrough
Cameron: 'It's a disease!'
More about HSV1 and beta amyloid
More about the possible relationship between the Herpes Virus and Altzheimer's Disease
A Herpes Vaccine may help
Now this could be a bit of a breakthrough
Tuesday, 12 November 2013
A convincing case against statins?
The link below will take you to a very interesting website. Scroll down and then download the 'fact sheet 1'. The other resources will also give you food for thought:
Statin Nation
Statin Nation
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