Alzheimer’s patients need a lot of care. So do their caregivers. Check in with them

In 2017, my father was diagnosed with Alzheimer’s, a progressive brain disease that affects memory, thinking and behavior. It took away his ability to work, one of the most important things to him other than me.

But it did not take away who he is. Since his diagnosis, I have heard people say his life is over, and the real person is gone. However, this could not be further from the truth. My father is still a human being that needs love. Even though sometimes he might not understand what’s going on, he does understand the connection. He deserves to be included in decisions and conversations, not treated like a child.

When my mother passed in 2020, I joined 800,000 Floridians in becoming a main caregiver, and again my life changed along with my father’s. I live in Delray Beach, but travel to New York, where my father lives, several times a month. In between visits, I have hired an aide who takes over. The back and forth and constant work of a caregiver has come with its own stigmas I never would have imagined.

As caregivers, we give so much of ourselves that we forget what a great job we’re doing. We put so much pressure on ourselves thinking we’re not doing enough, but in reality we do more than enough. Sometimes it doesn’t get recognized enough. People should know that it takes up a lot time — I’m not purposely avoiding events and outings.

Being a caregiver is emotionally and physically draining, and we just need time to recharge. Phone call or text a caregiver, just to check in with them. Knowing someone is thinking of them is truly wonderful.

In June, during Alzheimer’s & Brain Awareness Month, I joined the Alzheimer’s Association Southeast Florida Chapter in asking all Floridians to confront the myths and misconceptions that come with an Alzheimer’s diagnosis. Although our lives are changed forever, we are not defined by this disease.

For information on resources and how to get involved in the fight against Alzheimer’s, visit alz.org/seflorida or call the 24/7 Helpline at 1-800-272-3900.

Deniz Kilic is the current Ms. South Florida US Continental and an Alzheimer’s advocate living in Delray Beach.