My friend is a great fan of Duke Ellington. Naturally, he is an amateur expert on Jazz, and all things Ellington. He first introduced me to the Sacred Concerts
Visiting him now, this good old friend, over the last few years, has increasingly been affected by alzheimer's disease. Pastoral care and visiting are now important occasions of kenosis, of self-forgetful love. The fragility and uncertainty of communication, not knowing whether we are recognised at any level registering within the heart and mind of my friend; then, our friend's overwhelming tiredness of body and mind, and the consequent and apparent vacancy of a face well lined with the wrinkles and muscle movement of tens of thousands of past smiles.
There is conversation all around the day room; some of it is the banter of carer and cared for; some is the talk of those still able to build the scaffolding of meaning, to keep the conduits of communication alive with words and memories and shared experience.
And then, some is the one way conversation of a lover with the beloved, a child with the parent, a friend with a lifelong friend, a husband or wife with the one who has shared decades of a life that had become symbiotic, a two way traffic journey of love, companionship and conscious commitment to see life together. It is this dynamic but complex relationship between human love and dementia that raise deep and searching questions about who we are in relation to those we love, and who they are in relation to us.
Because now for the lover who comes to visit the beloved one, to care and to be with this so long loved person, all this shared life story seems to have become the responsibility of the one; and a life once shared is now constricted after all these years, to singleness of intent, when only one is left to sustain the two way covenant and having to do so alone. Shared imagination and hopefulness are now the responsibility of the one in whom those precious human gifts are still at the service of this uniquely crafted human relationship.
And then there is the remembering of the one and the not remembering of the other. Memory is fading, memory, that precious essential component of personality and character. Memory is failing or failed, and previously vivid pictures are now gray, ambiguous, perhaps even blank for all we know. Memory, where resides the plot and purpose and repository of the unique story of all that has been for these two people, slips into confusion and eventual emptiness. Remembering too becomes the willingly borne burden of the one, in whose memory the other lives, and in whom their identity retains definite and cherished existence. These are burdens hard to bear, and requiring pastoral care that combines the delicacy of a neurosurgeon touching raw nerves, and the faithfulness and courage to be there in the anger, anguish and bereavement of a lover forgotten by the beloved.
Visiting a unit which specialises in the care of people with dementia, therefore, requires a deep kenosis of the spirit. Our competence as communicators, and our training in saying the right thing, are stripped of much of their effectiveness, Our dependence on the usual ways of relating through touch, eye contact, sound of voice and particularly the currency of words, concepts, and ideas, has to be abandoned, because with this person, at this time and in this place, much more is required of us.
Oh yes, words still matter; the speaking voice remains an essential reaching out to the other; and eye contact, touch and gesture retain their value as gifts of the self to the other. But without the comfort of knowing that the beloved other understands, will respond, will reward us with recognition, acknowledgement, and those exchanges that enrich, enhance and confirm our relationship. This is loving with no thought of reward; this is casting the bread of our caring upon the waters with no promise whatsoever that they will return to us.
The great prayer of Ignatius Loyola, wih minimal adjustments, can be a useful prayer which we say before going to visit in a unit dedicated to caring for people with dementia.
Teach us, good Lord, to serve these your children, as they deserve;
To give, and not to count the cost,
to speak and not to heed the empty silences,
to toil at being present, and not to seek for rest,
to labour with tireless heart, and not to ask for any reward,
save that of knowing that to these your children,
we are conduits of your love, and bringers of your Presence.