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.