A Man with Lewy Body Dementia Chooses to Live with  Courage, Dignity, and Kindness

My husband and I recently attended an all-day dementia conference presented by Teepa Snow. Teepa is a fantastic presenter and educator,and I always come away from her trainings with new ideas and information.

This time, I was inspired by Barney, a man Teepa invited to join her on the stage. About a year ago, Barney got frustrated because he couldn’t find the “Text” key on his computer. He searched and searched and couldn’t find it.

He decided something was wrong with his computer, so he went to his wife’s laptop thinking he might find the “Text” key there. I’m not sure how he discovered or remembered that you can only send texts from cell phones, but once he did remember, he knew for sure that something was wrong with his brain.

He made an appointment with a neurologist right away. When he was told he had Lewy Body Dementia, his wife suggested making up a bucket list. He said, “Maybe we could go to Paris.”

She booked the trip that afternoon. When they returned home, Barney realized he didn’t want to spend the rest of his life just entertaining himself. Instead, he wanted to focus on his relationships and his quality of life.
He said, “I am most sad about the impact this disease is going to have on my family, so I’m going to put all of my energy toward living with three priorities: Courage, Dignity, and Kindness.”

He even had a ball cap embroidered with the three letters, “C––D––K,” to help him remember how he wanted to live and treat others.

My heart aches for Barney, his wife, their children, and all of the people who care about him. Barney is a handsome, intelligent, successful man in his mid-fifties, and his brain is dying. There is nothing anyone can do to change that.

But perhaps the rest of us could try to follow his example. Whether you are a caregiver or a care receiver, it’s important to remember that you will not always be as kind, helpful, and patient as you would like to be. But if each one of us could make a decision to start our day with a commitment to living with courage, dignity, and kindness, we might be able to make the burden of living with and caring for people with cognitive disorders just a little bit lighter.