LBDA

Early Onset LBD

Ellen L DeChant
Wednesday, March 29, 2017

My husband, Ken, was diagnosed with Lewy body dementia four years ago. He was highly educated and 60 years old. We had been together for over 10 years, having met when we were both going through divorces.

My father suffered a stroke at the same time that we were told Ken had Alzheimer's disease. Several months later when my father passed away, Ken's symptoms worsened, and I noticed physical issues that were first subtle then undeniable.

After being re-diagnosed, we decided to marry because it was important to me that he was assured that I'd be with him for the long haul. So we are still newlyweds! I quickly packed up our beloved home, which Ken practically built, to move to a one level home that would be safer for Ken. Not long after, I was unable to care for him at home, even with the help of an aid. It was heartbreaking but I had to place him in a dementia facility.

Soon after, my mother also passed away. It was a staggering few years. Now, he is nearing the end. He is in his third facility, finally at one which is small, attentive, and loving. He lost his ability to read, write and talk early on. He is extremely thin, and has visibly aged. He is in a wheelchair and unable to do almost anything for himself. The toll has been great. I visit him for 2-5 hours daily in addition to a private companion.

The silver lining is that he still knows and loves me. It's been the only atonement of LBD. I live day-to-day and get through by cherishing the sweet moments we share, where just holding hands means the world to both of us. My belief that there is more to life than what we know and see helps give me strength to get out of bed each morning. I constantly remind myself that we were very fortunate to have been able to share an exceptional relationship that many people never know.

Yet along with Ken, LBD has taken a chunk out of me that I'll never get back. It's the price of loving deeply.