Book review: Dementia by John Swinton

The twenty-seventh book I read in 2017 was Dementia: Living in the Memories of God by John Swinton.  Swinton approaches the experience of dementia from a Christian theological point of view.  So much of our practical theology focuses on the autonomous choices of the self: what does it mean when the self forgets itself? 

Swinton's answer to the problem is explicated in the book's subtitle: even if an individual has forgotten himself, he is still remembered by God.  We don't worry about the eternal destination of a Christian who dies in his sleep or after being in a coma, both states of self-forgetfulness; most Christian tradition similarly doesn't worry about the death of an infant; yet the changes associated with dementia for some reason leave us worried about what happens when a saint seems to have "forgotten" God.  "If we are faithless, he remains faithful -- for he cannot deny himself" (2 Timothy 2:13).

Reading this book I was struck by how much our society fears dementia.  Those who are affected by it today suffer a fate not much worse than lepers did in past societies: put out of sight and out of society, denied contact with family and friends because "he wouldn't remember we were there anyway."  We celebrate cancer patients as heroes whether they fight to the end or choose "death with dignity," but Alzheimer's patients don't have any visible place in our culture. 

Even worse is the language we use to describe them, the most common of which is "empty shells."  Just imagine if we so casually referred to terminal cancer patients as "walking dead" or "disease-ridden corpses-to-be."  If nothing else, this book has challenged me to treat the mentally-disabled with greater respect.

Several years ago, I read a letter to Dear Abby from a woman who had a friend with Alzheimer's.  After her diagnosis but before her decline, she had asked her friend to promise her that she would not let anyone they knew see her "that way."  The friend gave the promise, but as the woman declined, she continued to find great joy in attending church services, particularly the music.  Her friend, despite her promise, kept taking the patient to church, as it was the only time she showed enthusiasm.  I was shocked and horrified that Dear Abby chastised the friend for breaking her promise: when her friend was "in her right mind," she had not wanted to be seen in a vulnerable state; now that she was impervious to the opinion of others, she ought to be locked away from the world in accordance with her earlier wishes.

I recall an interview with Christopher Reeve several years after the accident which left him a quadriplegic. He was asked if he had had a living will, would he have directed the doctors to "pull the plug."  He responded that, if he had been asked when he was able-bodied if he would want to live out his life as a quadriplegic, he would have insisted that he would rather be dead; during the time since his accident, however, he had discovered that he still valued his life, despite the significant difficulties and indignities he suffered on a daily basis.  What if we allowed able-bodied Christopher Reeve to make decisions on behalf of quadriplegic Christopher Reeve, over his objections?  What if we took The Who at their word ("I hope I die before I get old") and approached them with a lethal injection a decade or so ago?  Why do we privilege one season of life over another, with the idea that one of them represents "the real me" which gets to make decisions for all of them and the rest of them mere shadows?