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Essays on LBD Caregiving

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I wanted him to be the old Nelson, not who he was becoming after years of creeping dementia. I wanted to resurrect the Nelson I once knew and preserve the relationship we had nurtured as it was. I considered that “us” to be as good as it gets.

LBDA did not exist when my mother passed away. Ten years passed and I never heard much more about LBD. I realized more had to be done. You can’t fight a disease no one knows about.

The day at the nursing home started out discombobulated. I lost my car keys on the way into Nelson’s room where I discovered it looked like moving day. All the books were off his shelves. Blankets were balled up. It happens now and then. I’m never sure if he really is preparing to move out or just doing busy work. I think it may have been busy work today because his first words to me were, “Wait ‘til you see the barn!

“What barn?” I asked.

Outside my window the sun shines its October brightness on a scantily clad maple tree that has shown off its fall color for each of the twenty-five years I have lived here. Change is in the air.

LBDA volunteer Adam King tells the story of Deborah, his mother-in-law, and the crisis that lead to her move into an assisted living facility.

Acceptance evolved slowly with assistance from counselors, friends, and mentors who helped me to look at my beliefs.  Being “good” doesn’t mean “bad” things will never happen. People with illness or disability are of no less value than healthy people.

It’s good that we can’t see ahead. I think about that initiation into our marriage. Now I smugly mutter things under my breath when I hear young lovers say they pledge unconditional love, or pronounce expectations that they will always be together with their love.

During the first five to ten years of Nelson’s disease, I was in so much emotional pain I couldn’t laugh or even comprehend other people’s laughter. The bottom had fallen out of my safe secure world, and I was in free fall.

Tonight I’ve said goodbye to my husband. But a loud, guttural, demanding call of another resident follows me as I start out the door toward home. I turn back to see him, wheelchair bound, imploring me with his eyes. He wants to say goodbye. Words ring in my ears. “At least talk to me.”

My list of “taking care of me” requirements has grown longer as I’ve aged. Now I do fifteen minutes of stretching in the morning. I eat oatmeal. I walk several times a week. For socialization I often persuade someone to walk with me, but go alone if I have to.