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Over the past few months and again this week, I am reminded of the Members of Rotary Melbourne who are finding ways to manage the most painful of realities.  The slow demise of their loved one, with illness and/or dementia.

As one Member told me, when I suggested he was experiencing what we call in grief work, a disenfranchised grief, he replied:  "It is the long farewell!" 

How often when we hear someone has dementia, Alzheimer's, memory loss, "is not cognitive", do we feel sadness, convey our sadness initially, then 'label' the person with the name of the illness, and move on with life.

Months later, when we meet the carer, do we just accept that they are now "caring" for their partner and this happens everyday to many older people?  Is it in fact something that makes us uncomfortable?  Is it a "taboo" subject that we may even avoid?

Disenfranchised grief or ambiguous loss is one that lacks clarity and can lead to sharply different assessments of exactly who or what has been lost. There may even be some question as to whether or not a loss has occurred, or if this is a loss that should generate deep emotional response.

With uncertainty about how to respond, members of the social network often do nothing. We may even avoid the carer and the partner, because we (the network members) are uncomfortable with the uncertainty, or put off by intense emotions resulting from what we may measure, an "insignificant" loss.

Alzheimer's or dementia are significant losses for both the carer and the loved one. They create the normal states of shock, disbelief, helplessness, hopelessness, depression, acceptance that accompanies loss, for both the carer and the loved one.  The pain doesn't go away, the pain is there every minute, every hour, every day.  It gets masked, covered over, lays raw, gets adjusted and hovers in different intensities and is experienced differently by each person. 

We must not judge the depth of loss for both the carer and the loved one, or the reality and pain for them as they "lose" their loved one, their private relationship, their loss of expectations for their future, their loss of friends who disappear et al.  Instead, they are left to accept the changes in a form of aloneness in living, loving and happiness.

Back to our Members.  I personally know five of our Members who are quietly caring for a loved one.  Their sadness is palpable.  While we return to face to face Rotary meetings and travels and our hopeful plans for future, let us all give some extra support and care for those who are experiencing a real grief and real loss that is anticipatory, ambiguous and a "long farewell" to their loved one.

Dorothy Gilmour


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