“People must decide to be hopeful despite all, and they must make this decision again and again.”
Several months ago, our friend Mike Splaine suggested I read an article by Stephen Post, Director, Center for Medical Humanities, Compassionate Care, and Bioethics. When I saw the words “the deeply forgetful,” my eyes filled with tears. Dr. Post truly honors and understands people who are living with dementia and their care partners. I’m sharing just a portion of his beautiful story of hope, with a link at the end, so you can read the rest.
HOPE IN CARING FOR THE DEEPLY FORGETFUL: ENDURING SELFHOOD AND BEING OPEN TO SURPRISES
Stephen G. Post
In the lives of carers for the deeply forgetful, hope might be best defined as “an openness to surprises.” Dementia, in its intractable, progressive, and irreversible form, is often caused by Alzheimer’s disease (about 60 percent of cases). There is much bleakness in the insidious pealing away of memories and capacities. Where is hope? Is there any at all?
The idea of hope as “being open to surprises” emerges from twenty years of working with carers in support groups and community dialogues. Yes, there is an assault on the story of a life, but despite the losses, there are also sporadic indicators of continuing self-identity that make caring meaningful.
The term demented is so often used in a derogatory manner, and lends itself to dehumanization and despair. The deeply forgetful suggests continuity with a shared humanity, for which forgetfulness is a problem of degree, from the absent-minded professor to the shopper who has forgotten where the car is parked, from the patient who has just awakened after shock therapy to the athlete who has suffered one too many concussions, from the young child whose capacities for memory have not yet developed to the adolescent with attention deficit disorder. We all have some problems with memory, but to varying degrees at different times. I recognize that classically “dementia” implies a precipitous decline from a former mental state, and has been sharply contrasted with “normal” age-related forgetfulness. But with such middle ground as “mild cognitive impairment” and the like, there is clearly a continuum involved. It is all a matter of degree.
Stony Brook University School of Medicine, Department of Preventive Medicine, Director, Center for Medical Humanities, Compassionate Care and Bioethics
Please visit his site to complete the article and read more.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.