It turns out I'm something of a 'course junkie'.
Recently, I've had the itch to study again and yesterday I started David Kessler's Grief Education Certification Training. (http://www.davidkesslertraining.com )
As in the past few years I've been interacting with dementia and pondering on how people living with dementia are affected, I've been struck by the number of 'practical' suggestions and the paucity of reflection or even acknowledgement of the vast grief that surrounds that condition.
Where to begin ...
As part of the first week of the program, we were introduced to a list of some of the more commonly experienced types of grief, including anticipatory grief, delayed grief, secondary grief, complicated grief, ambiguous grief, collective grief ... you get the idea.
One of the more surprising ideas - to me - was the idea of the 'practical griever'. That person apparently acknowledges the loss (perhaps a death), goes to the funeral, cames back and gets on with life as before. Really??? I'm still getting my mind around that one and wondering how these people shape up in the longer term.
But, getting back to dementia, I've been wondering if one of the reasons we hear so little about the grief of dementia is that it encompasses so many different types of grief. In fact, the whole gamut.
Some types of grief
Anticipatory grief. In my own experience, I remember quite vividly contemplating each of my children when they were born, visualising with surprise and astonishment that they would grow old and die!
At the time I interpreted this as a morbid personal fascination to be strongly discouraged: now, I realise this could be categorised as a form of anticipatory grief!
Statistics tell us that the older we get, the greater our risk of dementia from multiple causes.
At the same time, we are bombarded with advice on how to stay young and preserve our faculties.
Nowhere is there talk of the elephant in the room - the anticipated grief associated with the potential loss of youth and vitality.
For those who are carers living with dementia, the anticipatory grief can be even more real as they realise that the inevitable deterioration that accompanies the progress of the condition can be slowed but not stopped.
Collective grief. A good example of collective grief would be the outpouring of emotion that followed the death of Princess Diana. Or the more recent death of Queen Elizabeth. To a greater or lesser extent, we are all touched and affected by these events; some of us obviously much less than others. But we are certainly all aware of them and how those around us have been affected.
Similarly, we are all more or less aware of dementia in its various manifestations: Lewy Body, Alzheimers, cardiovascular ...
We may not spend time grieving the loss of life as a result of these conditions, but we are all to some extent affected. We may be part of the vast army of actively involved carers or part of that other lesser seen army of support workers who make it possible for the actively caring to perform their roles.
Whether we choose an economic lens, a social lens or some other point of view, dementia affects us all, not just those on the front line of caring.
Of course, the same applies to other 'incurable' conditions - immune conditions like lupus and motor neuron disease; to other large minorities in our midst - like the disabled.
Where to from here?
One of the goals of David Kessler's Grief Education is to support participants in integrating their own experience of grief, whether it be personal - for all of us - or professional.
Our homework for the first week, for example, which is NOT required to be handed in but only done for our own viewing, is to make a list, in chronological order, of the 10 most important losses in our lives.
Wow ...
One of the things that surprised me - and I think, judging from comments, many of the other course participants - was the sheer number of losses in their lives.
David gave us his list as an example. It was short and to the point, starting with his name and DOB, followed by ten events described in short phrases that included the date of the event, and ending with the current date.
I'd like to suggest that we dementia-marathoners apply something similar to our experience of living with dementia.
Make a list - for you eyes only - of ten major losses associated with your experience of dementia.
Till next time,
Onward and upward ...