31 July 2012

Reality bites

The fifth annual Reality Bites festival of nonfiction literature was held last weekend here at our beautiful Cooroy Library on the Sunshine Coast. In past years I was a member of the Sunshine Hinterland Writers Centre committee that organises the festival each year, and an enthusiastic volunteer helping out at festival events. This year, however, the progression of Allen's condition made it too difficult for me to attend committee meetings, usually held in the evenings. And then when Allen was hospitalised with pneumonia in January, I had to give up any involvement in festival preparations. But as festival time rolled around, one of the women who has been a key organiser of each year's festival and who knew I'd have liked to remain involved asked if I might be able to do some of the catering for events on three successive days of the weekend festival.

And so I found myself baking three dozen scones for a Classic Afternoon Tea that featured a discussion about the books participants love the most, and why we value then so highly (led by Jane Gleeson-White – read her excellent summary of her participation in Reality Bites on her website, bookish girl). Then I prepared several cooked dishes for the lunch-time buffets that are spread out in the Authors' Green Room on Saturday and Sunday, so that guest authors and festival coordinators don't have to race off between sessions in search of food. Cooking and food preparation kept me too busy to attend the Friday night festival opening or the morning sessions on Saturday and Sunday. But after delivering the food each day, Allen and I stayed around for a few of the afternoon sessions on Saturday and Sunday, at least until the hard seats and intense concentration became too tiring for him. And we participated in the afternoon tea session on Friday, too.

I say 'we enjoyed' and 'we participated', but the truth is I don't think Allen was able to absorb much detail at any of the sessions we attended. He seems still to enjoy the social aspects of intellectually challenging events such as talks and panel discussion – as he does the fortnightly Film Festival showings that we also attend. But this morning, for example, when he came into this room where I was checking email to ask (I think) how many oranges he should squeeze for breakfast, I tried in four different ways to suggest that he just pour out juice from the bottle of orange juice that is in the fridge. He looked confused by that response, but went off to the kitchen. A short time later, he was back to ask what I had said, and I again tried to say, as simply and slowly as possible: pour orange juice from the bottle on the fridge door. But still, he couldn't understand. Eventually I had to go and show him what I meant.

How is it, I wonder, that Allen does seem able to take in some relatively complex messages – some plot lines in dramatic TV programs, for example, or foreign films (both of which are always subtitled in our house, as we use that feature for all of the programs we watch on our TV). And he was able, I'm pretty sure, to at least 'get the gist' of some of the weekend festival's sessions we attended. And yet often he cannot understand even the simplest of sentences directed to him by anyone in everyday conversation.

Partly, I suspect, this is a matter of stress levels in any particular communication event, and the effect that stress has on his ability to process the language he's hearing. When he's just a relaxed audience member whose understanding of any messages is not being tested in any way, he seems better able to absorb at least enough of the language he's hearing to make some sense of it. With films of course, there are also plenty of visual cues to assist. I even think Allen's extensive store of intellectual data, processed over many decades of reading, writing and talking about all kinds of ideas, is still helping him to make sense of spoken language that he can now take in only in a piecemeal fashion.

But when a question, instruction or comment is directed at him in particular, and he's expected to respond in some way – either by talking or acting in a particular way – then his stress level seems to increase and that further hinders his ability to process whatever language he's hearing. So he is almost speechless when trying to talk on the phone, for example. And even the anxious tone of my voice contributes to his stess at times, I'm sure. More and more often now, even I cannot fathom what Allen may be trying to say, or what subject he's wanting to say something about. As he desperately gropes for words, I ask myself: is this a continuation of the last thing we were talking about? Or is he starting a different topic altogether? He used to be able to respond to a query such as 'What is the subject here? What are we talking about?' with at least a word or expression that helped set the scene. But often now, he can't even do that.

So I end up feeling like a beached fish, floundering about madly, gasping for some idea of what it is he's trying to say. Not surprisingly, as I get more desperate to help him, he gets more and more stressed. And he will sometimes end up shaking his arms in frustration, or boxing the air, very occasionally letting out a swear word (something he very rarely ever did in earlier years). I'm very grateful that Allen's never been a violent person. But I can well understand how anyone with a streak of aggression in their make-up might end up becoming quite violent in the frustration of not being able to make himself understood. And Allen's inability to make himself understood is stress-inducing for both of us, and so the problem gets aggravated.

One thing I no longer think it's correct to say, however, as is often said about people with aphasia, is that Allen always knows what he wants to say but just can't get it out. Sure, he starts off knowing what he wants to say in general, or what it is he wants to talk or ask a question about. But now in the process of trying to vocalise I believe he often also becomes mentally confused about what it was he wanted to say in the first place. After a while he seems to 'lose the thread' of his thoughts now, as well as being unable to express them. It's hard to know this for sure, because sometimes he just gives up in exasperation. And even if he doesn't give up, it's beyond his ability now to explain what is happening in his head, or how aware he is of what's happening. But at times, I'm quite sure he becomes confused as well as frustrated.

This is not something that's easy to measure, but 33 years of living with someone really does equip you to grasp some things intuitively about your partner and his mental state, even when it's not possible to ask questions or get answers that make sense. Fronto-temporal dementia is the likeliest development in later stages of primary progressive aphasia. So I guess I'm always on the look-out for behaviours that suggest this may be happening to Allen. But generally, Allen remains mentally pretty stable when he's relaxed, in good health and among people whom he trusts and who show genuine care and concern for his well-being. For the moment, we can only hope this continues to be the case.

I started out talking about a literary festival, though. And my intention (hijacked, as so often is the case, by the demands of my caregiving role! – and here I had to laugh as, right on cue, Allen came shuffling in to show me the three sentences he has managed to write in his spidery scrawl, the beginning of a letter to his niece that he is asking me to help him finish; he's been working at his desk for several hours now, and these few lines are the result) .... as I was saying, my intention in this post was to say how good it felt to be sitting, however briefly, in a place where ideas, not sickness and symptoms, were being discussed by people with active, alert minds.

So much of my life is now spent in silence – and though it's usually a comfortable silence with a loving, generous partner with whom I've had decades of discussion about so many different topics and ideas, even so, it's still silence. And this weekend's few hours of intellectual challenge and beautifully expressed ideas made me determined to get down to the Brisbane Writers Festival in September, for at least one whole day of intellectual brain-food. So I'm about to contact the children to see how I can make that happen – who will take Allen for one long Saturday at least in the first week of September? Or come up and stay with him for the weekend?


Red said...

Very perceptive observations about Allen's condition. I can learn from your observations as many people around us have similar conditions.

Chartreuse said...

Appreciate your comments, Red. Yes, I've certainly learned a lot about dealing with people who aren't 100% functional. Mainly what's needed is patience - something I never had a lot of. But in recent years I've just had to slow right down. And it's done me a world of good.

Anonymous said...

Sounds very stressful for all concerned but great that you got to the festival (and you are planning to go to the BWF). I spend a lot of time not talking to people - except my daughter - my husband can go days without talking much and my son is hard to have a real conversation with (one sided is an understatement) - so I know what that is like - one of the reasons I am so chatting online I suppose.

Anonymous said...

You have put this so well. I have a blog I sent to another page but I have not heard from them about putting it up and I think it is going on my page...you hit the nail on the head with this one...the dropped thread. The poem is by Emily Dickinson, and I so long have felt it connected to my head, but for Bill and Allen I live with it daily. A hard to write but very informative and in a way reassuring blog. At least we are not alone!
There is one sentence I cannot bare to hear anymore from Bill: I don't understand what you are saying. And it has currently switched to I don't know to everything said. But last night I sent him across the grocery store for bananas while I was at pharmacy and he found them PERFECT! and brought them back. I was both surprised and pleased. HUG
I will look for that poem now and email it. I may have already used it but I don't think so.

Anonymous said...

Here it is:
I felt a Cleaving in my Mind
by Emily Dickinson

I felt a Cleaving in my Mind—
As if my Brain had split—
I tried to match it—Seam by Seam—
But could not make it fit.

The thought behind, I strove to join
Unto the thought before—
But Sequence ravelled out of Sound
Like Balls—upon a Floor.

Chartreuse said...

Gin, that is such a perfect poem for anyone with brain dysfunction. She describes in just a few words the awfulness of losing control of one's thoughts, I think. Of course, the poem may be about other things as well, but it speaks volumes to me about Allen's state of mind too. Thanks for sharing.

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.