Imagine being unaware of who your loved ones are, or not knowing what to do when someone puts a toothbrush in your hand, or not knowing the words you once used to describe a sunset. This is the reality of some people who are living with dementia. They are truly drowning in a sea of forgetfulness. It can be a daunting experience to watch one’s mother or father lose their capacity to think or reason, to move or speak, to acknowledge that you are their child.
By 2030, it is projected that the U.S population of people over age 65, will double and by the middle of the century, 16 million Americans will be impacted by Alzheimer’s (Alz.org). The implications of 1 out of 8 baby boomers having Alzheimer’s, on my generation (the Xennials) is striking. This means, that for each baby boomer that has Alzheimer’s, 1 or more of my peers will be tasked with taking care of their parent that may or may not remember they are their children. To be forgotten by old classmates, neighbors, or a beloved teacher is one thing, but to be forgotten by your parents is another. To be forgotten by the very ones that helped to shape your own sense of identity is a hard pill to swallow.
But, this sea of forgetfulness can be a double edge sword for those who will be the caretakers. On one hand, it is a burden to face the reality that some of the very memories that shaped you, that made you who you are, may be forgotten by the ones closest to you. This realization can lead to one enter into an anticipatory grieving process (long before the loved one ever dies a physical death). On the other hand, this sea of forgetfulness, requires you to enter into a new kind of relationship with your loved one. It requires you to truly enter their world, to see their world from their perspective, which sometimes shows up like disconnected puzzle pieces. And it’s not our job to put the puzzle pieces together for them, but to hold the pieces they give us, to explore these pieces as far as they will go. This sea, requires us to not be afraid to sink in and lose touch with our own reality, in order to enter theirs.
As a chaplain, providing pastoral care to people with dementia, I have found music and religious rituals seem to be “sticky memories”. There are residents I work with that may never enter into a full substantial conversation with me, they may not always remember the names of their children but if you sing a familiar song (maybe a hymn of the church, or even a song from their school days) or begin reciting the 23rd Psalm or the Lord’s prayer, they have no problem reciting it line by line. These things miraculously have not been drowned in the sea. Which makes me think even more deeply about the importance of cultivating one’s spirituality while we have the full capacity of our minds and bodies. I’m beginning to believe that maybe it is the spirit that somehow keeps one’s head above the water when the mind and even the body seems to be drowning in the sea of forgetfulness.