04 July 2010

Aphasia. What a shame!

A and I have had quite a long time (about four years) to come to terms with the scourge of aphasia, and how it can blight its victims' lives. To be sure, we had even greater life-threatening medical issues to deal with one year ago. But as difficult for both of us as A's three-month hospitalisation and slow recovery from open-heart surgery were, the challenges of all that never had as damaging an effect on our relationship or our quality of life as does our ongoing battle just to be able to communicate with each other.

One reason A's inability to express himself readily in speech and writing affects us to such a degree may be that for all of our adult lives we have both placed a high premium on oral and written communication. Now, however, that critical aspect of our life together is undermined daily and in more ways than can easily be explained or imagined.

Here is just one small example. Over six weeks, A is participating in a 'Falls prevention' program at a nearby rehabilitation hospital. I drop him off there on two mornings a week, and on each of those days he has four hours of intensive therapies – physiotherapy, occupational therapy, counselling, group discussion, even basic tai chi! This is the first time in more than a year that A participates in something on his own. As I wrote in an earlier post, other than time spent with a Blue Care carer, until now A has not followed any program or taken part in any activities in which I did not participate. So this is a big breakthrough for us both.

I know A is really enjoying being part of the rehab group and 'doing his own thing'. When I pick him up four hours later, he is bursting with enthusiasm about this or that part of the day's program. But it's a good thing that he comes away with a few handouts giving some idea of the content covered that day, because all his attempts to tell me about the day's activities usually end in an exasperated groan of frustration on his part. He just cannot find the words he needs for what he wants to say or describe. And I am on tenterhooks the whole time, suspended there, trying to understand what he's desperately striving to tell me. We play 20 Questions, me interrogating and guessing, him sounding out meaningless syllables that seem to him to be related to whatever word or words he's searching for.

A can usually communicate only a small amount of whatever message he is trying to convey, and almost nothing of any subtle or humorous asides that he might like to include. And unlike for stroke victims who may improve with time, our situation is never likely to get better. In fact, it is most likely to get worse.

"Yes, aphasia is a terrible affliction. But to me, there is no shame involved, only sadness."

Far from wanting to suffer all this in private, however, I often find myself wanting to scream at anyone prepared to listen. At the very least, I'd like more people to understand something about the condition and how difficult it is to live with, especially when everything else about us may seem to the casual observer to be quite normal. I'd like people to stop telling me how great A looks, and instead spend some time trying to talk to him, or at least ask me what they can do to help. I know some people prefer to remain very private in their battle with aphasia. But for myself I just cannot understand why anyone would be worried about letting their name be used publicly when it might help to bring this debilitating condition out into the open, where others may begin to understand it.

What shame could there be in being recognised in your community as people who are dealing with aphasia? Yes, aphasia is a terrible affliction. But to me, there is no shame involved. Only sadness. But who does it help if we go on trying to deal with it behind closed doors? Mightn't it be easier to bear if more people around us understood what we are dealing with and could help? Who knows if sharing our story wouldn't help someone else who is just starting down the road and searching for ways to cope.

I know that no two experiences of aphasia are exactly alike, so I guess everyone must deal with aphasia in their own way. But some kind of acceptance, some willingness to say out loud or in print, "Yes, we have this problem, and here's what you can do to help", seems to me to be a good first step to take.


Gabrielle Bryden said...

What a great pity that some people feel that way (though is it possible there is another reason they don't want there names printed?). I'm with you on letting as many people as possible know and getting information out there. Your groups sound like a good idea - I used to run an autism group in Brisbane but the numbers are less around here so don't do it here in Woodgate (the nearest group is in Bundaberg but I don't like travelling that far).

Chartreuse said...

Well I've thought a lot about it this weekend, Gabrielle. Some people for whom aphasia is the result of a stroke can reasonably expect to improve with time. Maybe they don't want to be branded with a label if they think aphasia may be a temporary condition for them.

For Allen and me, of course, aphasia is a permanent fact of life now, one we've had a few years to get used to. In fact, when we first got the diagnosis in 2006 we were actually relieved. It explained a lot of otherwise worrying symptoms that might have had a worse cause (e.g. brain tumour).

Another reason I probably react differently is cultural. I never think of myself as American any more. After all, I've been here for 40 years. But often I find I do react differently to a lot of people I know. Could it be some of that ole Yankee get-up-and-go attitude coming through? I do believe Americans (OK, I'm generalising, but there are such things as cultural or behavioural characteristics) may be a wee bit more enterprising and willing to put themselves 'out there' - not always something to admire, I agree. But this might explain why I seem to lack a certain reserve in dealing with figures of authority such as doctors and hospital staff, and why I jump in boots and all when it comes to issues that need fixing. In other words, I'm a tad pushy! Make sense?

Gabrielle Bryden said...

It could be both those things or neither. I find the best way is just to ask the people involved for their reasons. Most people are open to negotiation.

Stafford Ray said...

Yes, Chartreuse, part may be your American upbringing. I remember the fun press here had when President Reagan revealed that he was having his colon checked for polyps!
But part is 'shame', ie the remnants of the 'stiff upper lip' syndrome and 'what will the neighbours (or dare I say servants)think'.
You will just have to depend on the old 'word of mouth'.
And don't underestimate the power of your blog.

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.