Shall I attach myself?

I had been looking for some metaphors or images, that captured the depth of tragedy in which one finds her/himself with a dementia. It is the dissolution of self, in a most frightening form. Ultimately, the trope that arrived to my subconscious was the recurrence of macabre images from the Patrick Swayze/Demi Moore/Whoopi Goldberg film, GHOST.

When Tony Goldwyn, as Swayze ' s adversary, has his ectoplasmic self enveloped in black writhing, - I had found my images. It is terrifying to me; losing through the onset of dementia one's connection to the bigger world, the multiple perspectives, and the powers to reflect, reminisce and to rhapsodize. If I am writing this blog and am demented, then any attempt to make this topic understandable may be churned up and pulled into a vanishing point.

The late Robin Williams was found at autopsy to have shown signs of Lewy body dementia (LBD). The constellation of symptoms includes central, core, suggestive and supportive features - some similar to, and some very different than those seen in the most well known dementia: Alzheimer's disease. http://www.lbda.org provides resources that further outline the Lewy body dementia diagnostic criteria. One 2013 paper on LBD from the Mayo Clinic, described in the epidemiological literature*, cited its incidence as roughly one-fourth that for Parkinson disease. When Williams had discerned that his mental status had changed, and what the cause might have been, I can only imagine the terror and the pain he must have felt at knowing his creativity, his zest for life and his utter humanity were being dragged into fog.

Williams has had esteemed company, descending into that flat world of dementia. Charlton Heston, Univ. of Tennessee basketball coach Pat Summitt, Glen Campbell, Norman Rockwell, Ronald Reagan and E.B. White are only a few of the famous whose creative and productive lives have been spirited away. And, like other diseases and syndromes that affect the individual's ability to communicate, think and live independently, dementia brings gloom into the lives of the friends, family, support circles and wider world around the person afflicted. Those who know and care about the person with dementia - they are left to lament that the person they know - that person is leaving, or is gone.

It may be true - true, that the person with dementia is becoming someone not recognizable to their circles of support. The vestiges of the person that is remembered, should still compel her/his loved ones to keep near, and love the one they're with. The late Oliver Sacks made a particular point in his neurological case studies, of imbuing the persons he served with dignity - and giving them relentless respect. Whomever they had become at the time, Sacks saw that these persons were not that different than us and deserved our compassion.** They also deserve our connecting with them.

"Shall I attach myself to the man who sprays wax on the grass?" - this was a statement passed on from an actual patient with dementia, who said it to a colleague in a rehab hospital, who passed it along to me. YES, you should - that would be my answer. And we should attach to you.

* Savica R. et al, "Incidence of Dementia with Lewy Bodies and Parkinson Disease Dementia", JAMA Neurology, 2013, 3579.

**  for example, read Sacks' essay "The Lost Mariner", originally found in the 2/16/1984 NEW YORK REVIEW OF BOOKS, then collected in THE MAN WHO MISTOOK HIS WIFE FOR A HAT. New York: Touchstone/Simon and Schuster, 1998, 256 pp.