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.

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?

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.

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.

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.

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.

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.

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.

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

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

Are statins being overprescribed?

I was shocked to be told by a pharmacist that there's an 'unwritten principle' that everyone over 60 should be put on statins.  I know that statins have a number of possible side-effects, including memory loss (as I've mentioned previously).

A few days after my conversation with the pharmacist, I read this article:

http://www.theguardian.com/lifeandstyle/2013/oct/22/butter-cheese-saturated-fat-heart-specialist

For those who may not have time to read the article, this extract will give you a flavour:

"In the UK eight million people take statins regularly, up from five million 10 years ago," he writes. "With 60 million statin prescriptions a year, it is difficult to demonstrate any additional effect of statins on reduced cardiovascular mortality over the effects of the decline in smoking and primary angioplasty [a technique used by doctors to widen the arteries].

In the original trials carried out by drug firms, only one in 10,000 patients given statins suffered a minor side-effect. But among 150,000 patients in a "real world" study – people who had been routinely given statins by their GP – 20% had side-effects that were so unacceptable to them that they stopped taking the pills, including muscle pains, stomach upsets, sleep and memory disturbance, and erectile dysfunction."

Naturally the medical and pharmaceutical establishment disagree, but it's possible that the tide is starting to turn in favour of a more cautious approach to the prescription of 'statins for all'.

Oct 28th:  I'm adding to this post because I have learned that the British Medical Journal has come out against 'statins for all' (in this case, all over 50).  This article seems to me to explain the debate very clearly:

http://www.bmj.com/content/347/bmj.f6412

'Robotic' but useful behaviour

My wife sometimes behaves like a robot.  And I'm glad she does.

For example, we live in a Victorian house with steep stairs and no downstairs loo. We've had an extra handrail fitted and she manages the stairs pretty well.  I always set off down the stairs and remind her to follow me down.  Every so often, I realise after a couple of steps that she isn't following.  Invariably I find that her clothing has caught on the new narrow handrail.

Now what would be even better would be if she could tell me about the problem but, failing that, this seems to be the next best thing and it reminds me so much of video you see of robots encountering obstacles.

Similarly, she sometimes sits down unexpectedly, when we are out walking.  Sometimes because she is tired or because I'm hurrying her (which is always best avoided).  But she always sits down very, very carefully and seldom comes to any harm, much as a robot might be expected to do.

I don't know whether other people with dementia do this, but I'm glad she does.