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At the heart of the film Still Alice is Julianne Moore’s portrayal of early onset Alzheimer’s Disease. Told from the Linguistics Professor’s point of view, we see the world shrink and distort for her, as if she has boarded a tiny boat and is suddenly in the middle of the Atlantic. It is a terrifying story and an important one, not only because it explores the ravages of personhood that is Alzheimer’s, but also because it allows us to imagine the tremendous loss family members and friends bear in watching this wasting disease erode the loving, competent, insightful, and forgiving person they once knew. One thing I take issue with is the fictional story’s overworked irony of a linguistics professor losing her words; the true story of such a condition may be found in the film Iris, a biographical film acted with ravaging truth by Judi Dench, Kate Winslet, and Jim Broadbent about the life and intellectual disintegration of Iris Murdoch, celebrated Irish philosophical novelist. This disease is horrifying because it robs its sufferers of the competence developed over a lifetime – whether one stays home with children, rises up the corporate ladder, makes one’s mark as an academic, or sells cars. Alzheimer’s robs its sufferers of meaning: how to use toothpaste . . . how to follow directions . . . how to find the way home from a familiar location and, eventually, . . . how to find the very meaning of home.
My husband and I touched hands frequently as we watched this film together. We both wept for the imaginary Alice and for the fraying of family life the disease causes. At the end, we remained seated, our fingers touching, our eyes moist. It is a mature person’s film and a young person’s film; it has a heart and a soul that is deep and tender because it expands our understanding of what it is to care for someone who is losing the self to this condition we call Alzheimer’s as well as our understanding of the person who is losing the self.
Tapping is a force for good in the world and perhaps never more so than when it is used to support our participation in the daily round of difficult, heart wrenching struggle. When used on bathroom breaks, before sleep, and upon waking, it can give family members of Alzheimer’s sufferers brief respite from their own tremendous grief as well as the grief of loss they are witnessing in the life of their beloved. Tapping helps us to live in the present and to be present to what is. Tapping helps us to hang on to perspective even when something as daunting as Alzheimer’s is ravaging someone we know and love.
As I think of the biographical Iris and the fictional Still Alice, the film Alive Inside comes to mind (see my October 26, 2014 blog post). In that documentary, we see music lift Alzheimer and Dementia sufferers out of their isolation and into the memories made while listening to the music of their lives. It is a wonderfully optimistic film that prompts me to hope, somewhat naively, that the Iris Murdochs of the world will find their way into care-taking situations in which they will have music programs that bring them back from the abyss that is forgetting. I call myself naive because I know how understaffed most nursing home facilities are; I know too that because we lock people away from sight, it is easy for us to forget the isolating suffering so many experience.
Our lives need meaning and our long-term-care facilities need activists, agents of positive change, advocates. Adopting a person in a nearby nursing home sounds like a radical idea, and I suppose it is. But how else are we to discover what Alzheimer’s is and is not? Spending time with someone who is drifting on the great grey Atlantic that is the emptying mind is a soul stretching experience that will bring knowledge and love and perhaps even better care to someone who is utterly alone. If the thought terrifies, so much the better: the best advice when faced with a choice to increase our own and another’s humanity is always to feel the fear as we move forward. This, after all, is what courage is.
The ageism in our culture suggests that growing old, growing feeble, growing incompetent is somehow a shameful thing that should be locked away – out of sight and out of mind. But our culture is toxic for people of every age and it is up to us to change it. One place to begin is by confronting the fear that prevents us from getting involved with those who are deemed “lost” to Alzheimer’s and Dementia. And when we are in the thick of the suffering that inevitably comes when we extend our humanity, well, we have this wonderful tool that helps us to tame our grief, to restore our perspective, to gladden our and others’ hearts.
Until next week
Jane Buchan, MA, AAMET Advanced Practitioner, firstname.lastname@example.org, 802-533-9277