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.

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.

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.

Going home

When my wife was at the lowest point in her decline last autumn, a professional arrived just at the point when she had fallen down and was either refusing or unable to get up.  She kept saying: 'I want to go home.'  'I assume this is where she lives?', he asked.  When I confirmed that it was, he nodded sagely.  I have since learned that this is a common feature in the progression of the disease.

People ask why.  Some conclude that, as so often in the case of older people with the disease (and as often in the case of older people generally) the person is harking back to their early years, safe and secure at home.  They may be.  But to me, it seems more general than that.

Everybody seems to have some concept of 'home' that may have similarities to the home they first knew but may not.  Even people who have had awful early experiences usually pick up the idea of what home is supposed to be.  We all talk of feeling 'at home' in comfortable places and a host will say 'make yourself at home'.  And we have sayings like: 'Home if where the heart is.'

It seems quite understandable to me that when someone's world is falling apart, they would like to 'go home'.

The most important point to me is that I can't remember the last time S said this.  It must have been a long time ago.

Another intriguing snatch of conversation

As I've mentioned previously, I fall asleep nearly every night to the sound of S talking to, and laughing with, her 'friends'. I am quite happy about this and it doesn't bother me really. Occasionally, I can't help 'tuning in' to what S is saying, even though I'm trying to get to sleep.

Last night when I was just about off, I was suddenly aware of this conversation: 'So is it good or bad?' (laughter) 'I don't know' (a gale of laughter) 'I think I'll go half and half!' (even louder laughter) and then...'Brilliant!'

I've no idea what she was talking about. But what does it matter if she's so happy?

More conversation

A couple of day ago, S announced, 'She's gone!'. I'm very familiar with this. Normally it's a good friend that's gone. S used to be inconsolable about this, insisting that the friend would not come back. It hasn't been such a problem recently, but I'm still alerted by the phrase as it has led to such agitation in the past.

However this time it went: 'She's gone! My friend....to Venice.....which is wonderful for her!' No upset, no agitation.

S loves Venice. Two years ago we went there together and we were near Venice this year though as it was in July and we knew it would be very hot and very crowded we gave it a miss.

This happens more often now. A conversation will start off sounding ominous and will develop in a way that suggests there will not be a happy ending. But then things turn around and end happily. The example here is the most concise version I've heard.

My favourite words of S's are probably: 'Exactly right!' and 'Brilliant!', both of which can conclude some saga of misunderstanding or hostility.