THE BLOG
09/30/2014 12:00 am ET Updated Nov 29, 2014
PRESENTED BY JOHNSON & JOHNSON

What I Learned About Love as a Caregiver to an Alzheimer's Patient

Marie Marley

For seven years, I'd help my friend Ed get dressed and eat breakfast before I went off to work. But he'd soon call, desperately needing my help for some or other perceived crisis. I'd leave my job then return later. By afternoon, he usually had some other emergency, and I'd have to go out again. I'd return to work frazzled and try to finish some project with a looming deadline. It was a miracle I didn't lose my job. I'd fall into bed at night, exhausted, only to repeat my duties the next day.

It wasn't always this way. I met Edward Theodoru, a professor of French at Northern Kentucky University, many years ago. We began a friendship that, despite some ups and downs, would deepen and last until the very end, nearly 30 years later.

For a long time, our friendship was like that of any other close friends. Ed was my rock, helping me through several difficult and painful times in my life. But, then, Ed began to show signs of Alzheimer's, which slowly and steadily increased with each passing day.

In the beginning, Ed was unusually short-tempered and lashed out at me frequently. Although he returned to his gentle self later in the disease, it was hard for me to understand how this kind man could be so difficult at times. It was only later that I truly understood it was the Alzheimer's that was affecting his mood and behavior.

I had a full time job, but Ed needed care and monitoring 24/7 -- something I simply didn't have the ability to do. To make things worse, he adamantly refused to move to a nursing home, which was exactly where he needed to be.

Eventually, he gave in and agreed to move to an assisted care facility. People there would tell me how lucky he was to have me, which was oddly upsetting. They didn't understand the give and take we had in our friendship over the years. Nor did they know everything he had done for me when I really needed it. No matter how worn out I became, I always felt that I was the one who had been lucky.

Sometimes Ed had moments of total lucidity. One day he found his clothes (often he couldn't) and dressed himself (quite nicely, in fact). Another time he called and spoke to me eloquently about how much he appreciated my help. That brief moment of clarity and the tender expression of appreciation from a man who had lost so much warmed my heart and made me truly understand why I was doing this arduous work.

Although Ed's been gone for several years now, I still miss him. In fact, I think about him every day. I remember his kindness and gratitude, and I wish he were still here -- Alzheimer's and all.

Caring for Ed was difficult, especially during those moments when he seemed to forget about our friendship. It was a tough time in my life, and a number of times throughout the process, I considered giving up. But now, surprisingly enough, I realize that I'd love to be able to care for him all over again.

Caregiving can be incredibly challenging. One must have an abiding love and stamina to persevere. While caring for Ed, I discovered something important about myself. I discovered I actually could find the energy to keep it up day after day, year after year. I realized that my friendship with Ed trumped the tribulations and exhaustion that went along with it, and no matter what else impacted our time together, that love matters above all else.