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':

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


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.

Sunday, 12 January 2014

Well worth reading

Here's a link to an article by Sally Magnusson about her mum's dementia:

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.

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.