Soul Keeping in Dementia

What I find intriguing is how the soul-identity of a person living with dementia is incrementally, imperceptibly transferred for safe keeping with loved ones.

Personhood is conferred less and less by actual cognitive prowess and character and more and more through social bonds. This type of transcendence is completed when we pass on and leave behind memories, habits, recipes, fishing secrets, jokes and so many other ways of being. Like the imprinted seal on a ceasefire document, meaning continues in perpetuity beyond the physicality of paper, ink and wax.

Dementia Friendly Chatter

While it is impossible to be heard by everyone in exactly the way we intend, it may be worse not to reach out for fear of being imperfect. When approaching one of us living with dementia, clumsy words are oft less harmful than avoidance and abandonment.

Likewise in conversations with those of us living with dementia, our compassion and respect will prevail over careless words. We wholeheartedly welcome any of your examples of inclusive positive language; US and WE.

“Do any of us find that telling stories helps to fill the gaps?”

“Are any of us surprised by how fun this is?”

“Or how difficult it is to keep up?”

“We are doing the best we can.”

“We may be facing barriers.”

“We may have difficulty asking for what we need.”

“We may be trying to regain some control.”

“We may be seeking help in a way that feels safe.”

“We may be trying to connect the best we can.”

People say one of the gifts of living with dementia is having a second childhood. Is that true for us? In what way? Spontaneity, joy, truthfulness, playfulness, creativity, being affectionate – perhaps. Yet unlike children, people living with dementia have a lifetime of experience from which they hold values, opinions and make wise decisions.

How the Soul Endures Dementia

“The older I get, the harder it is to clean the mirrors on the ceiling.”

These reflections come from interviews hosted at Alzheimer Cafes (AC). Indoor picnics, singalongs, visitations at round tables and educational interviews/discussions. Those are some of the ways we seek to improve quality of life for those living with dementia, their families and caregivers. Also we strive to further understand the science of dementia as we know it.

Someone smarter than me offered; “It takes a village to raise an elder”. An African King said “When you bundle sticks together they are not easily broken and this is how I want you to live; bundled together”. 

Similarly, AC’s are communities where you can find strength, companionship and support. “We’re all in the same boat” is the AC motto.

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