Essays on LBD Caregiving

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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.

As I spoke my fears aloud, my voice for speaking back became stronger. “You don’t have to do it alone. You do matter. You will be ok. You will figure it out. You have more strength than you know. You have options you haven’t thought of. You will find a way. You are loved.”

I’m learning to live in a divided place where faith and doubt constantly collide, where hope and despair live side by side, where joy and sadness are expressed back-to-back, where love and fear walk hand-in-hand.

Maybe she, who understands my struggle with aging, illness, and loss, is here to share a little solace while we wait for greater faith and hope. Maybe together we will find our hope strengthened.

During my 15 years of caregiving, I would often wonder, what is the hardest thing I'm facing?

How do you cope without the perks of marriage nor a single life?

Nelson is hidden so deeply in the Lewy body maze that at times I think we’ve lost him. But now and again I get to enjoy a moment of clarity through the haze.