Living with dementia in Cleveland Heights

Leslie Brooks Wells displays some of her art. [photo: Kristin Brooks]

My mother was in the late-middle stages of dementia when COVID hit, and I needed to move her into our family home in Cleveland Heights.

A 60-year resident of the city, she had been living alone with the help of many caregivers, neighbors and friends. When her condition made her retirement from her beloved career necessary, she and her huge yellow Labrador became a fixture in their Coventry Road neighborhood.

I am sure that I have many neighbors to thank for her freedom to roam and linger without harm. I know none of this would have been possible without the help of local librarians, shopkeepers, fellow church members and, at times, even the Cleveland Heights police. I am deeply grateful she lived in this familiar, close-knit community.

Her path to becoming “deeply forgetful” has been so slow that many of those in her social circles did not see it. Some still do not.

She was diagnosed by world-class physicians, and then was essentially left without help navigating through the early stages.

We did not find help connecting us to resources or support, nor any blueprint to follow to help our family prepare. We, like millions of others living with or caring for those with cognitive impairment and other “different abilities,” made it up as we went along, and missteps were made. But that’s not the hardest part.

The hardest part of our experience has been the isolation that only grows as symptoms progress. Cognitive impairment can be a tragic self-fueling cycle, but it does not have to be this way.

Cleveland Heights has taken steps to come together to support policies needed to care for those affected by and living with dementia, including myself and my mother, and it recently was recognized as a “Dementia Friendly City.”

May 15–20, the Lee Road branch of Heights Libraries will host a Dementia Friendly Week to celebrate this milestone and provide resources and information to continue to empower the community to embrace dementia friendliness.

The moral intensity of the daily decisions caregivers like myself face was best described by Dr. Jason Karlawish, of the University of Pennsylvania’s Penn Memory Center, who said we are telling “stories about people struggling to live with a disease that early and relentlessly chips away at the very foundations of personhood: identity, privacy and ability to self-determine one’s life.”

Things will get better if we look for and listen to these stories. They may inspire our community to create additional pathways to support and provide people living with dementia that are, as Karlawish put it, “safe, social and engaged."

My mother has settled into her new neighborhood in the Heights. Her post-COVID world, like all of ours, has changed. Yet she has developed new friendships and routines. She still relies on the talents and kindnesses of neighbors to thrive here, and her days are made richer because of where we live.

I hope the Heights community’s understanding of our interdependence continues to deepen. Cleveland Heights has often been at the forefront of positive social change and this designation is a new opportunity to fuel it.

Kristin Brooks

Kristin Brooks is a care partner with her mother, Leslie Brooks Wells, who is living with dementia in Cleveland Heights.

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Volume 16, Issue 5, Posted 1:34 PM, 05.01.2023