Dementia and Rituals for Leave-taking

 

                                                                           Jen Hsieh

A long-time friend and a close family member have been experiencing dementia for several years now. One has Alzheimers and both are dealing with rapidly advancing memory loss. It's just sad to watch this process, as it was for my late mother. All were or are wonderful persons with deep and sustaining Christian faith but the various forms of dementia have no boundaries of race, creed, or colour. 

We have been fortunate to this point that friend and family member still recognize us, as my mother did virtually to the end of her days. It can be a cruel blow to companions and caregivers when that is no longer the case. As a minister I saw persons who were in lengthy loving relationships turn on their partners, sometimes violently. 

A recent New York Times article had the heading

THE NEW OLD AGE --

 

                                                                                                                                                                                                 When They Don’t Recognize You Anymore

People with dementia often forget even close family members as the disease advances. “It can throw people into an existential crisis,” one expert said.

 The piece explores how devastating this particular loss can be and how we might respond:

Ms. [Alison] Lynn encourages participants in her groups to also find personal rituals to mark the loss of recognition and other reverse milestones. “Maybe they light a candle. Maybe they say a prayer,” she said. 

Someone who would sit shiva, part of the Jewish mourning ritual, might gather a small group of friends or family to reminisce and share stories, even though the loved one with dementia hasn’t died. 

“To have someone else participate can be very validating,” Ms. Lynn said. “It says, ‘I see the pain you’re going through.’”

In all my years of pastoral support and leading study groups on dementia it never occurred to me to offer friends and family these wider pools for ritual gathering. Yes, I prayed with immediate loved ones and the person living with dementia. At times we would sing or repeat the 23rd Psalm because old hymns and familiar passages often remain in memory when much else disappears. We would share in communion together as well. 

Still, it makes a lot of sense to include others before a funeral or memorial. Ya live and ya learn.